I’ve looked at several web pages to compare symptom information. I feel the most comprehensive list is found at the site of the Society of Interventional Radiology. I’ll itemize them here and talk briefly about the ones that bothered the heck out of me.
- Heavy, prolonged menstrual periods and unusual monthly bleeding, sometimes clots. This often leads to anemia.
- Pelvic pain
- Pelvic pressure or heaviness caused by the bulk or weight of the fibroids pressing on nearby structures
- Pain in the back or legs as the fibroids press on nerves that supply the pelvis and legs
- Pain during sexual intercourse
- Bladder pressure leading to a constant urge to urinate
- Pressure on the bowel, leading to constipation and bloating
- Abnormally enlarged abdomen
Symptoms of my fibroids:
- Heavy bleeding. My clots were so huge they could star in their own late-night monster movie.
- Pelvic pain. It was torture every time my uterus was forced to expel one of the large clots. To relieve the pain, I would munch enough Motrin to fill a PEZ dispenser.
- Pelvic pressure and heaviness. I always felt bulky and full.
- Back pain. I could never quite get into a comfortable position.
- Bladder pressure/frequent urination. In the bathroom just about every hour during the night.
- Abnormally enlarged abdomen. Someone actually thought I was pregnant and congratulated me! (Although not funny at the time, I’m chuckling now.)
Wow, that looks pretty bad written out. It’s amazing that this was not enough to get me into a doctor’s office to take care of the fibroids once and for all. The thing that caused me to crawl in for help is the topic of my next post.
Note: I noticed on the SIR site that only 10 – 20% of women with fibroids ever require treatment. Well, I guess that just makes us special. 
[Added September 17, 2006] Deep vein thrombosis is a rare complication resulting from uterine fibroid tumors. For more information, please see this deep vein thrombosis post.
——————–
Related Posts:
What are uterine fibroids?
Uterine fibroid tumors and anemia?
Would somebody tell me how much these dang fibroid tumors weigh?
Sex and fibroids just don’t go together, now do they?
June 13, 2006 at 3:04 am
Hi. Just thought I would share my fibroid experience with you. I am now 38 years old and had my fibroids removed 8 years ago. I had quite a long surgery and felt great and had normal painless periods after that. Unfortunately, I just found out that they have grown back and look pretty much the same. Large (size of grapefruit) and gross. I certainly recommend having your children after your surgery, as they do tend to return and you don’t want to be like me and wait too long. The up side here is that if you were in pain like I was……leg pain, heavy painful period that actually made the fibroid expand and hit my rectum, and severe cramps…you will be happy to know things return to normal for quite a bit. I remember what a relief it was to have a period with no pain at all.
Anyway, like you, I am a “geek”, but I am a Network Engineer. I guess I can’t accept that the research is so slow and that my options appear to be about the same as they were 8 years ago, so I am now out looking for studies to participate in.
Write and ask me questions if you like.
Enjoy your life without the uterine aliens!!!!
June 13, 2006 at 5:07 pm
Hey, another geek! Cool.
Thank you for visiting and sharing your experience. I’m sorry for the return invasion of the “uterine aliens” but happy that you were able to have normal periods after your surgery. “I remember what a relief it was to have a period with no pain at all.” (sigh) It is so encouraging to read that statement from you.
It’s incredible that your options haven’t changed much after 8 years. That’s one of the reasons why I’m being so “inquisitive”. I want to know what’s going on. What’s available today? What’s right around the corner (clinical studies)? What’s down the pike (genetic, molecular, biochemical stuff)? I am hopeful that I’ll be able to dig up some good information to answer these questions.
I wish you well on your quest.
Take care.
June 20, 2006 at 11:19 pm
I just found out i had 2 fibroids last week, went to the er because of the pain and started bleeding clots like ive never seen, gross.
scared me enough to go to the er, and they did the ultrasound, I go to the dr.fri, im really nervous,but my back, right leg, and pelvic are in so much pain i can only lay here taking advil and a heating pad for relief.
I also have ovarian cysts and my right side feels ready to explode.
I just need something done and soon, i only hope they do something, i cant take much more, this is really screwing up my life and i go to work feeling horrible.
It does make me feel better to see im not alone, not that i wish pain on anyone, i really dont, but at least i know i have the same symptoms and im not crazy like some drs make you feel.
June 21, 2006 at 5:59 pm
I’m sorry about your severe symptoms. Glad to hear you are seeking help. Taking that step can be scary but think of it as moving forward. I didn’t know what to expect when I first started my treatment but I can say I am improving. There were a few days along the way that were discouraging but I just kept thinking that I couldn’t go back to the way things were in the past. I know you are nervous about Friday but you are facing this and taking control. Remember you have options and those medical professionals are there to help you. You deserve to feel better. I’ll be thinking of you.
You are not crazy…and you are definitely not alone.
June 22, 2006 at 2:21 pm
Hi, geekettes! I am a mathemetician myself, a nerd, but I care about my appearance anyway. several years ago, I was diagnosed with fibroids. There are between 12 and 20 of them, one the size of a canteloupe, another the size of a grapefruit, and others of various sizes and shapes (why do they compare them to fruit?)…maybe we should do a topological analysis of fibroid groups! Anyway, my abdomen is so large, that I needed to buy a size 16, then it was 18, and now size 20 (gasp!) to fit my abdomen, while the waist, hips, and legs of the clothing fit like loose clown-pants! Getting them altered does not help…the big abdomen shows when the waist, hips, and legs of the garment are taken in to fit. Although my ob/gyn’s (2 of them) diagnosed the fibroids, they insist that the bulge is due to fat, although I diet and exercise regularly, and have no fat elsewhere on my body. ***sigh*** Advice, anyone?
June 22, 2006 at 4:00 pm
Hello fellow geeks! System Analyst here. I can sympathize with you all. I too have fibroids. I’m only 33yo and this started to be a problem last year-suddenly. First the HEAVY bleeding/Huge clots. Then it lightened up. Now it’s back. Symptoms:
Urinary frequency (I’ve got a 7cm fibroid sitting on my bladder)
Cramping from hell (pez dispenser indeed!)
Back pain
Pelvic and abd heaviness/pressure
Three weeks of bleeding and clotting
Anemia plus a barely there ferritin level (I now get IV iron infusions)
and I feel soo bloated and enlarged. I was a 10 and I’ve enlarged to a 12.
I’ve got a UAE scheduled for a week and a half from now. I’m looking forward to having them suffocate to death, even if it sounds weird. Girls, have them treated to they will continue to treat you. Myomectomy or UAE. Find an IR, Reproductive Endocrinologist (RE) or experienced gyn surgeon to talk to. The RE is for those who want to continue with pregnancy after surgery. REs are usually experienced in reproductive surgeries and may have more experience getting your uterus back in the game. It’s a personal choice with whatever that you do, so schedule those consults!
June 23, 2006 at 1:19 pm
Geeks in the house. Nice.
BobbeeDee,
Wow. You are dealing with some big fibroids. Not sure why your docs aren’t making the connection between that and the size of your abdomen. As far as advice, I agree with Jennifer. This is a special problem that requires specialists. I am fortunate because my GYN is a GYN surgeon. He is all about moving my treatment forward. My IR feels the same way. Everyone deserves this. If you are not OK with your present situation with the fibroids, YOU DESERVE to talk to someone who will give you options. Specialists are the way to go.
June 23, 2006 at 1:26 pm
Jennifer,
I appreciate the info on Reproductive Endocrinologists. I’ve added it to my list of things I need to research and post about. Good to hear of your upcoming UAE. Thanks for your words of motivation and best wishes as you move forward with your treatment.
June 28, 2006 at 8:00 pm
Hi!
Any advice please? I am 43 with two beautiful daughters 9 and 10 born by c-section. I’m a bit overweight (not hugely) over the last three months I’ve had really bad periods, heavy with clotting and a huge swollen stomach – even my “fat” trousers don’t fit around the waist. Haven’t been to the doctor – worried about ovarian cancer. Could it be fibroids or cysts – any reassurance anyone?
June 29, 2006 at 4:49 pm
Your symptoms sound like my fibroid symptoms but the only way to know for certain is to go to the doctor. I know you are nervous about doing that. I will sound like a broken record but you deserve to feel better physically and not have this hanging over you. Seek help. This gives you options.
July 13, 2006 at 2:10 pm
Had first lupron shot on 6/17 after having a few months of heavy periods and clotting. also had the feeling of a very full stomach. although the bleeding has basicallly stopped(still have very slight bleeding) I was hoping after 3 1/2 weeks the bleeding would stop. I go for next lupron shot on 7/17 and hope this will stop the bleeding completely. I am going for a 3-6 month therapy with lupron before i am scheduled for any surgery.
July 13, 2006 at 7:56 pm
Just finished the draft versions of a series of posts on my personal Lupron experience. I apologize for not having them up when you visited. Will post them tonight.
[Edited to add Lupron posts.
That first Lupron injection in February
My second Lupron injection in March
The very last Lupron injection in April
How are you feeling after your Lupron injections? Any side effects?]
In a nutshell:
Spotted every day. Some days I passed clots. Some days I had cramps. Although technically you could say I stopped having periods, I didn’t stop bleeding during the 3-month treatment. It tugged at my sanity but I made it through. I could tell my anemia was getting better and that was the main reason for the Lupron. I felt stronger and had more energy.
I can’t say if your bleeding will stop. This will vary. Hold on to the fact that you are moving forward with your therapy. Some days I had to repeat that over and over plus listen to my “fibroid theme” (especially the last part of the song):
U2 – “Stuck In A Moment You Can’t Get Out Of”
Thanks for visiting and commenting. I wish you well as you continue with the Lupron.
July 26, 2006 at 1:20 pm
Hi there,
My mother has been diagnosed with a soft ball sized fibroid tumor, she is scheduled for a hysterectomy (minus ovaries if the dr. can let them be) on Monday. We were discussing it and wondering how much a softball sized tumor would weigh… any ideas? Presently her abdomen is about the equivalent of a 5 month pregnancy. I want to thank you for this website, I don’t believe either of us have thought that she might be anemic before reading here. She has very low energy, and although her periods are still on a pretty reg.routine, she does pass some very heavy clots. Thanks again!
[Edited by EclecticGeek. Visit the fibroid weight thread and follow geeks trying to answer this question.]
July 27, 2006 at 2:13 pm
Unfortunately, I haven’t been successful so far in my search for information on fibroid weight. Heard they can weigh several pounds but I can’t find anything that relates weight to approximate size.
Glad you found the site helpful. That anemia connection is not always clear. It went right over my head up until diagnosis. Felt so much better once corrected.
Sending best wishes and positive thoughts to your mother on her upcoming surgery. Happy to hear she is moving forward with a treatment plan. It’s good you are there to support her.
Thanks for your visit and comments!
August 3, 2006 at 8:17 am
It seems like all geeks (I’m an accountant in the UK) must be interested in the weight of their fibroid!!! I found out yesterday that mine is 15×10x10cm (melon sized keeping on the fruit theme!) and I would love to know how much extra that is putting on the scales for me! My weight has been all over the place since March (3 pounds on, 3 off, 4 on etc on a weekly basis) and I will really be glad when it is out of me. Unlike most people I don’t have any abnormal bleeding – I just feel like I am 6 months pregnant! Bigger boobs, massive stomach and needing the loo loads. I also have the added complication of having ulcarative colitis so I am really up the wall with that at the minute too!
Glad there is a place like this to talk to other people in similar situations!
[Edited by EclecticGeek. Yep. Finally added that fibroid weight thread.]
August 3, 2006 at 9:18 pm
I just do not understand why finding the answer to the fibroid weight question is so difficult. My fibroids weren’t (aren’t?) nearly as big as yours but I still want to know. So, I figure there must be some geek(s) out there who have published something. Some data, some calculation, some observations, something.
I’ve been hanging out at Google Scholar and PubMed typing in keywords to search (fibroid weight, weight of fibroids, fibroid weight calculation, etc.). Found a promising abstract that correlates uterine weight to uterine volume through a formula involving pi. The calculation worked for enlarged, irregular uteri. Unfortunately, the abstract is from 1996 and the online journal only has full-text articles from 1998 forward. Arg!
I think part of the problem is the shape. Fibroids aren’t perfect spheres so you can’t use some standard formula. Also, I can’t find a consensus on the composition. I hear uterine tissue but also collagen tangles. I’m sure the percentage of whatever is in there varies also compounding the problem. I will not give up. The answer is there and I’ll find it.
Excited that I’m getting hits and comments from other countries. We are all in this together. Thank you for visiting and posting! Happy you feel so comfortable here.
August 17, 2006 at 10:42 pm
has anyone experienced inguinal lymphadenopathy in connection w/ uterine fibroids?
August 18, 2006 at 2:24 pm
Had not heard of inguinal lymphadenopathy so I looked for a reference. For those of you who are also not familiar:
Lymphadenopathy (Wikipedia)
Lymphadenopathy (Merck)
(I got the Merck link from the Wikipedia page.)
You can try searching at PubMed if you’re looking for research papers.
Hopefully, someone with this experience and/or more information will post here. If you have additional questions or comments, post again or send me an email. Take care.
August 21, 2006 at 2:01 pm
Hi I used to be a database janitor so a quasi-geek. My current occupation involves growing grapefruit size fibroids and running to the bathroom every hour. Luckily no heavy bleeding, but I am smalled framed approx 95lbs these two grapefruits are like melons in me. Anyone had abdominal myomectomy? Also heard of the fibroids becoming attached to adjacent organs?
I am 37 and no kids but don’t want that option taken away from me, i know, i know mother nature will do that soon. but should still have a couple of good years. Anyone conceived after a myomectomy?
Ohh and doctor recommendation in New York City??
[Edited by EclecticGeek. Follow these questions in the Abdominal Myomectomy thread and finding a fibroid doctor thread.]
August 22, 2006 at 3:37 pm
Hello, yet another geekette here with a fibroid. I have questions and can’t find answers. I am looking for how much fibroids weigh. Anyone find that out? I’m 30, and just found out about my fibroid a few months ago. For the last year, I started having discomforting feelings — frequent urge to urinate, bloated tummy that hurts all the time like it’s full, and so on. I get sore necks all the time, occassionally swollen lymph in neck.I also suffer from allergies when I eat food — nothing in particular, just the act of eating sets it off. I attribute all this to the fibroid and perhaps toxicity from old food, I guess. I then tried changing my diet by limiting my intake of meat. I went vegetarian for a few weeks … what a difference it made. I nearly had no PMS symptoms (which I usually get severe PMS — just ask my boyfriend). I wondered if anyone else tried altering their diet ….and had any relief, if anything? Just throwing this out there. Best of luck to all of us. Oh, and my fibroid is in my uterus and they said it is 7cm. HOW FAST DO THESE THINGS GROW? THE DOCS DON”T TELL ME ANYTHING.
Sorry for yelling, but I’m frustrated by all this.
[Edited by EclecticGeek. Fibroid weight thread is pretty popular. Also, follow the fibroids and diet thread.]
August 22, 2006 at 4:07 pm
Nikki here again. Anyone know of a forum for us w/ fibroids to discuss our symptoms so we can compare with others? I’m wondering if there is some common theme amongst us … for example, I have suffered with some kind of scalp (flaky) problem for most of my 20’s (now 30). A doctor told me the swollen lymph I got in my neck was caused by the drainage from the scalp. The swollen lymph only happened once in the 10 years I’ve suffered from the scalp problem (to my knowledge). But I have had swollen glands many times in my neck (thinking its a different gland). But for the last year I’ve been getting soar/stiff necks and back pain every few months, usually around time of my PMS. It’s bizarre. I don’t mean to sound off on a different tangent. I’m trying to see if there’s some kind of connection to all this (food allergies, soar necks, get sick easily, always feeling down or never 100%, fibroid, flaky scalp, weight issues, the list goes on). Sounds like my immune system is very week, but what can be causing that? The diet change I did helped alleviate a lot of those symptoms. I make every effort to avoid processed foods and eat less meat, particularly red meats.
Here’s something about that lymphadeno… someone mentioned in an earlier post … http://www.aafp.org/afp/20021201/2103.html
(I’m still trying to understand what that entails)
[Edited by EclecticGeek. I started a Fibroid Forum here and also a new Fibroid Discussion O Group.]
August 22, 2006 at 4:08 pm
yikes, s/week/weak/gi ….
August 22, 2006 at 9:05 pm
El,
I consider everyone to be a “geek” about something so you’re OK. Here’s a link about abdominal myomectomy. Once there, you can read a little overview, what to expect, common concerns, and pros and cons. It’s the Mayo Clinic decision guide for uterine fibroids. Hopefully, someone who had one will also comment.
Myomectomy: Three Surgical Approaches (Abdominal, Hysteroscopic, Laparoscopic)
Don’t know about fibroids attaching the organs. I have heard of adhesions in association with endometriosis (uterine tissue that becomes implanted outside the uterus).
Endometriosis and Adhesions
As far as fertility, I did a post on robotic myomectomy. It’s supposed to be less invasive. Not sure how they determine who qualifies (size and/or location of fibroid?) but the woman in the story had a tennis ball sized one.
Get your fibroids on the dance floor and do the robot
Lastly (whew), I put the links to find doctors in NYC on the “About” page in a comment. In case you didn’t see it and for the benefit of others:
About The Geek
Hope this helps. Keep posting if you have more questions.
August 22, 2006 at 10:43 pm
Nikki,
Hi geekette! Can’t find a postive answer on the weight question. I hear some can weigh as much as 50 pounds but I can’t find ANYTHING that will tell me that (like in your case) a 7cm fibroid weighs “X” lbs. That’s what I want. Still looking.
How fast do they grow? From small to large, I would think over several years. From large to larger, I’m not sure.
Researchers are investigating various avenues looking for possible causes of fibroid development and growth. These include genetics, hormones, the immune system, and environmental factors. Don’t know of a direct link between a weakened immune system and fibroids but…
I will comment on the issue of food. I do believe that there are too many added hormones and antibiotics in the meat supply. Can’t believe these factors wouldn’t affect people over time. I “cleaned up” my diet about 12-18 months ago. Felt better but after a few months, I felt horrible. I’ve been slightly anemic for about 20 years. So, my periods were bad but I consumed enough red meat to keep me out of the danger range. Once I changed my diet, my body couldn’t keep up. Iron flowing out but not coming in = severe anemia. That’s what happened. Drastic situation that needed to be fixed. It’s amazing how, at the time, I didn’t string ANY of this together. So clueless. Hindsight really is 20/20.
The good news: Once again, I am making changes. Paying more attention to what goes in but taking into consideration my dietary needs. Less meat, more soy. Trying to eat more organically. Definitely, fresh over processed. Too much junk out there in stores. I know it’s taking a toll. How can it not? I think there is a connection between meat (esp. meat not organically raised) and fibroid growth. My opinion. I’m sure I’ll hear from representatives of the beef industry any day now.
*New Age Hippie/Bioscience Nerd now steps down from her soap box.*
Forums? I did lurk a little in the About.com forum several months ago. Haven’t been there recently. Link should take you to the Fibroid Tumor folder.
About.com Forum – Women’s Health – Fibroid Tumors
If anyone knows of a good forum, please post.
Thanks for the lymphadenopathy link. Great illustrations. I would have to dedicate some time to get a grasp of this topic. I understand it in general but don’t know nearly enough to make a substantial comment.
Thanks for visiting and commenting. Feel free to post anytime.
August 23, 2006 at 4:18 pm
Speaking of diet, does anyone else drink alot of soy milk (whoops, beverage!)? I drink about 325 mls per day (one and a half glasses) to keep my PMS sypmtoms at bay, and now I’m wondering if the phyto-estrogens contained in soy contribute to the growth of my fibroids? Any thoughts? I certainly don’t want to give up the benefits of soy, and my husband and children would agree!
August 23, 2006 at 7:12 pm
I was a vegan for 6 years of my life (from 19 to 25). I slowly became a meat eater again. Then started eating dairy again after about a year or 2. I’ve always altered my diet for the purpose of my health. I always thought I ate healthy. But in my quest to figure out how to lose weight, I found out that our food, particularly here in the U.S. isn’t so healthy. Between all the hormones and processed foods which strip out the fiber beneficial to a healthy digestive system, our health is destined to decline faster. I don’t know what link there is between this and fibroids.
These days, I focus on eating whole foods (non-processed, whole grains). I now can’t stand the taste of white bread/pasta/rice, etc. But the fiber is important in our diet, so I am sure to get it from whole foods. Additionally, I try to eat plenty of raw foods for the enzymes (fruits, veggies). I eat meat, but I try to eat more fish and very occassionally some red meat. Chicken every now and then (I’m just not crazy about it so much). But I shop at Harry’s or Whole Foods when I can so I can get the hormone-free meats and organic foods. When most of my diet is based on these foods, I feel great.
I don’t know much about soy. I only drank soy milk when I was vegan. I don’t drink it now. But I do like tofu every now and then (vegan habits are hard to break). I still won’t drink milk. I might cook something with some kind of dairy, like whipping cream. But I don’t do milk. Though I do eat eggs — hormone-free, grain fed, cage-free, etc.
Interesting, the stats on women with fibroids … I wonder if that is women of the U.S. only? Last year (2005), I went to the Basque Country (Pais Vasco) in Spain, where my boyfriend is from. Something that struck me as fascinating was that everyone was very thin. How envious I was. I could not find any pants to fit me there at all.
I’m a size 12 (usually a 10). I’m not that big! But, of course, I was big compared to everyone there. The diet there consists of a lot of meat (pork ham, sausage, steaks), seafood, bread, olive oil, and some veggies. A lot of “tortillas” (spanish omelettes) and fried foods. I was confused by this.
They have Jamon Serrano (ham), hanging in all the restaurants. That ham is served everywhere (its yummy too). The people smoke like chimneys and drink alcohol a lot (it seemed). My boyfriend told me the foods there are natural and fresh and have no hormones. I’d have to verify that; but the people looked great. Hardly any overweight people in sight. But I wonder what the % of fibroids in women are in Spain (or any other country for that matter).
August 23, 2006 at 7:42 pm
Found this, and it is interesting, but now sure how accurate it is.
http://www.wrongdiagnosis.com/u/uterine_fibroids/stats-country.htm
August 23, 2006 at 7:45 pm
Sorry to post a lot, but think this is a great site and thought it would hopefully be helpful to post about fibroids. Here’s a site I came across a few months ago when I first found out I had a fibroid. I think it has some good info to offer as well … http://www.uterinefibroids.com/
August 23, 2006 at 7:49 pm
One more ….
http://www.esi-topics.com/fibroids/nations/d1a.html
** Top nations with Fibroids **
(this may be better than the first on I posted)
This is not surprising!
August 23, 2006 at 10:16 pm
Brenda,
Thanks for visiting! Researchers (scientists, doctors) still do not have a definite answer on the phytoestrogen/fibroid question. Of course, I have links.
Etiology and Pathogenesis of Uterine Leiomyomas: A Review
Long but pretty interesting because they discuss the research on a bunch of possible risk factors. Fortunately, you don’t have to scroll down far to get to the “Diet” section. Third paragraph talks about soy. It says that “these substances generally act as weak estrogens, but they may also have antiestrogenic effects”. (They aren’t sure.)
MedlinePlus Herbs and Supplements: Soy
Look in the third paragraph of the “Background” section near the top.
“It is not clear if they stimulate or block the effects of estrogen, or both (acting as “mixed receptor agonists/antagonists”).” (They aren’t sure.)
But there are also statements like this:
What are phytoestrogens?
“Much remains to be learned about these plant products, including exactly how they work in the human body. Doctors caution that certain women need to be particularly careful before using phytoestrogens, especially women who have had or are at increased risk for diseases or conditions that are affected by hormones, such as breast, uterine, or ovarian cancer; endometriosis; or uterine fibroids.” (They aren’t sure so they tell you to be cautious.)
My thoughts:
I so look forward to the day when we FINALLY know what causes fibroids. When there won’t be a million and one unanswered questions. Until then, I love soy (milk, tofu, miso, edamame, you name it). I eat/drink it in moderation and don’t feel as though it contributed to my problems. I am actually more concerned about the cow’s milk I used to drink.
Soy seems to really help you. Monitor yourself for changes. Talk to a professional (this would include nutritionists) if you are really concerned.
August 23, 2006 at 11:32 pm
Nikki,
You always raise interesting points. I totally agree with what you say about food. Way too processed and way too many hormones. I was listening to something on television a few days ago. The speaker said that the food offered now sustains life but not health. We really must be careful in our choices.
I’m sticking that paper link from the previous comment here also:
Etiology and Pathogenesis of Uterine Leiomyomas: A Review
The “Diet” section discusses red meat consumption and a comparison between vegetarian and nonvegetarian premenopausal women. Stuff in there about how changing your diet can alter estrogen metabolism. Studies showed that a high fiber/low fat diet reduced estrogen levels. Also, relates digestion to this whole process.
There’s also a section entitled “Geographic Differences”. Most of the data is in reference to percentage of hysterectomies performed for uterine fibroids. It suggests that fibroids are common globally. I was surprised to discover that there aren’t very many studies looking at the prevalence of fibroids in other countries. Guess that’s why I couldn’t find anything in Google Scholar.
OK. That whole section of your comment talking about Spain made me hungry. I agree factors would include the way the animals are raised and the freshness of food. Hormones, antibiotics, pesticides. All of these things concern me when I think about my food. Must limit my exposure to these things. You mention some good tips.
I appreciate the links. Ended up finding some interesting papers from that last one. Thanks (as always) for your comments.
August 26, 2006 at 10:45 am
Hello, I was wondering if anyone can give me advice on having a c-section while carrying a large fibroid in the uterus with the baby. I am 28 and getting ready to have my first child. I have had a difficult pregnancy with my fibroid, it is 24 cm and completely blocking the birth canal. The doctors are concerned with me hemoraging and said the worse case scenario is that they would have to do a hysterectiomy if they can’t control the bleeding. I am worried I am going to wake up and not be able to have anymore children. Has anyone had this experience.
Thanks D
August 26, 2006 at 1:47 pm
Hello, I’m not much of a Geekette, but I too have fibroids. I found this site very interesting and informative and thank you eclecticgeek for running it for us. What I find interesting is that most of you seem to know how big your fibroid/s is/are. My gyn told me that I had a “good sized melon” but I assumed she meant my uterus, not just one fibroid. Now I think I’ll ask more questions and pay more attention to what she’s telling me. I too have developed symptoms over the past couple years. When I first found out I had fibroids, my doc told me I had several but I didn’t have any symptoms (that I was aware of). Since then my cramps have gotten worse and more frequent and before I knew it, I was having cramps 3 weeks out of every month. Once the bleeding got heavy (although no clotting) my doc put me on the birth control pill (I’ve had my tubes tied since I was 23 – I am now about to turn 42) so it’s funny that I have to take this pill everyday even though there is no chance of ever getting pregnant. Anyway, the pill has helped with the heavy bleeding but not the cramps. Now my symptoms have progressed to include severe back pain (I have a crushed disc and a herniated disc above my tailbone that haven’t bothered me in years) cramps all the time and a frequent feeling of always needing to urinate even though not much comes out! How frustrating that one is. I feel as though my lower abdomen has grown and I feel like I look pregnant although I am sure some of that is fat since I have gained weight. In the mornings, when I wake up, I can feel my fibroid… if I put my palm on my belly as I lay on my back, it’s as hard as a rock and about the size of a large grapefruit. Pushing on it, I can feel it pressure on my rectum. I’ve had uterine ultrasounds every six months for two years now and this last one, the tech told me I didn’t need to have the vaginal ultrasound because my uterus was so “protracted” – I think that’s the word she used – that it was useless and wouldn’t catch any pictures. So then my gyn calls with the results and tells me that my uterus has grown since my last test 6 mos prior. Since I am done with childbearing, I have decided I want to have a simple hysterectomy (only my uterus). I was hoping to be able to have it done vaginally or even liposcoptically but I don’t know if that is possible. The way my doctor talks, my uterus is huge, but I don’t know the actual size of it. My next appt with my doc is in October. I plan to discuss the option of Hysterectomy although she wanted me to try Uterin Fibroid Emolization. My feeling is that if I have to go “under the knife”, I don’t want the chance that it’s going to grow back and I’ll have to have another operation. I’ve been done with having children so I’d have no problem with the emotional side of not having my uterus anymore. I just don’t want to lose any sexual desire or feeling. Has anyone here had surgery on their fibroids? Thanks for listening, it’s great to have a place to chat with others who know what you are going through. My husband is great but he really doesn’t understand what I’m saying.
August 27, 2006 at 12:41 am
Danea,
Sorry you are having a difficult time with your pregnancy. I’m hoping someone with a personal experience will share. I did find a pregnancy message board that has a uterine fibroid section. There are posts about different experiences. Here is the link:
BabyCenter – Readers’ Comments – Uterine Fibroids
Post again to let me know if this link is helpful or if you have additional questions or concerns. Take care.
August 27, 2006 at 12:51 am
I am 40 years old and had surgery to remove the fibroids six years ago. However, they are back and I will be having a hysterectomy. My doctor tried to shrink the tumors with birth control pills, but the pills only caused more bleeding. Due to the tumors, I have never been able to have children, but I married a man that had a son whose mother left when the baby was 11 months old. That boy left for basic training in the Army last week. I sometiimes wish that I would have been able to have at least one child of my own, but that was not the hand that I was dealt and I feel that since I raised him, my stepson is my child. My hope is that someday, mediciine will find an inexpensive way to deal with this problem that will allow women more choices and a lot less pain.
August 27, 2006 at 1:44 am
Reds,
Everyone is a Geekette to me so you fit right in.
I appreciate the compliments. Glad the site helps.
You know I must leave a link. This is the decision guide at the Mayo Clinic site. It compares the different treatment options. Since you’ve decided on a hysterectomy, it gives information like the extent of surgery, what to expect, common concerns, and pros and cons. (It gives this for each option.)
Uterine Fibroid Treatment Options
I don’t know how much wandering you’ve done here. I have categories that contain my posts on various topics. Look in the right sidebar under “View The Geek’s Posts On”. You can also use the search box near the top. Most of the posts are on my symptoms, surgeries (myomectomy and UFE) and Lupron. I’m expanding to include other treatment options and fertility issues.
Thanks for sharing your experience. I think it’s important to know that you aren’t alone. I am happy you feel so comfortable here.
August 27, 2006 at 3:43 am
Eva,
Fibroids are a common problem but such a life-changing one. The treatment options are getting better but aren’t available everywhere and still involve making difficult decisions. So many factors to consider. No truly easy answer at the moment. Your hope for medicine is also my hope.
I appreciate you visiting and sharing your thoughts. Your stepson is definitely your child and one to be proud of.
August 28, 2006 at 9:40 pm
I can’t tell you how great it was to find this site! I’ve been doing a lot of reading about symptoms, recovery etc..and this is the most down to earth, realaxed site I’ve found….just what I needed, seriously. I’m having a myomectomy a week from tomorrow and have been trying to find information about recovery and such. I have all the symptoms everyone else lists and I don’t feel like such a freak now! No one I know understands really, I think they think I’m exaggerating or something (as if I could make this up!). It may seem so superficial but I’m wondering about weight gain after surgery? Anyone? And how long before you were up and going again? I have multiple fibroids, one being pendunculated and apparentely my uterus is “bulky”. One thing I also am slightly concerned about is that my doctor isn’t 100% sure that they won’t have to just remove my uterus instead of a myomectomy…that they won’t know until they actually perform the surgery which I have read could be true…but what are the odds? Any answers or experiences you have had would be much appreciated!!!!
Thanks again for having this great site, I don’t feel so alone anymore!
August 29, 2006 at 8:43 pm
Thanks for the kind words. Glad you feel so comfortable here. It’s hard for people to understand because sometimes it is surreal. Like it can’t possibly be happening. So, no. You aren’t a freak unless we ALL are.
My myomectomy experience was hysteroscopic and thus outpatient. Down time was limited. Weight gain/weight loss is something I plan on blogging about in the future ‘cuz I’ve had my “issues” but it was not a concern after my surgery. Not sure about the odds of hysterectomy. I do know this was also a risk for me with both my myomectomy and UFE.
Two ways to find my myomectomy posts:
1. Type myomectomy in the search box near the top and click “go!”.
2. Find the Myomectomy category under “View The Geeks Posts On:” in the sidebar (look to the right and scroll).
I’ll toss in the Mayo Clinic link about myomectomy in case you want more info:
Myomectomy (Surgical approach, What to expect, Common concerns, Pros and cons)
You are definitely not alone. Kick off your shoes and wander around a bit. Post again if you have other questions or concerns. Thanks for stopping by!
August 29, 2006 at 9:54 pm
I recently told someone that I never would have dreamed that this is what I would have to deal with, not that anyone imagines anything bad happening. Sadly Cancer immediately pops to mind in regards to something lots of people get and please do not take this the wrong way I am so glad it wasn’t that but to actually imagine you may lose your uterus…and at 33, it seems incomprehensible.
I hear you about “issues” so thanks for what you did say, it makes me feel better. I have a trip planned (planned for over a year now) for 3 weeks after surgery – 4 days in Miami and then 6 in Jamaica and as I mentioned…already have issues so I was kind of freakin’ out that it could be worse
I’m thinking that lying on the beach in a tropical atmosphere is not a bad way to recuperate…hopefully I feel up to the trip!
Seriously, your sense of humor is so great to come across, it’s refreshing and it humanizes everything a bit, you know? I checked out the posts – very helpful – and again thank you.
I will keep you update, perhaps my experience will be helpful to someone else. Take care!
August 30, 2006 at 2:24 pm
Someone asked about info on abdominal myomectomy (AM); potential of fibroid grwoing into other organs (bladder etc) surgery and recovery. I am on week 3 recovery from AM.. sorry its long but informative
Well I had all the classic symtpoms of fibroids and admonmysis (thickening of the uterine lining) – heavy 15 day bleeding, back pain, exhausted, buddy belly, cramps, clots, super frequest urination, anemic, weight gain and hard to lose weight etc. Went to my GNY and she ordered a MRI (time saver in lieu of the ultasounds and all the other diagnositc test docs do). Results showed HUGH fibroids all 3 kinds. Belly was at size of 5 months (needless to say I had already bought the dark color elatic waist breezy skirts by then in 2-3 x my size LOL)- typical “pear shaped uterus” extended up to my belly button. Grapfruit (here goes the fruit salad LOL) size pressing on the bladder, another on the back of the uterus pressing on my spine and colon) others all over… So my GNY referred me to a Fertility Specialist (Repreductive Endocrinologist) GNY Surgeon. FIND A DOC WHO HAS DONE AM SURGERY A LOT!!!! ASK ALL KINDS OF QUESTIONS because I am 39 and still want to have kids (Hubby and I have been trying for a while – but no luck because of the “broids). My doc was great and very detailed- been at it for 20 years, specializes in fibroids and fertility and never had a myomectomy turn into a hestorectomy (which was my biggest fear)- ran all the test and exams (endometiral biopsy to assue no uterine cancer, blood tests galore to check for all things including fertility, Urology Cat Scan to check for damage to bladder) to assure evrything was covered. NO other choice for me but AM. Doc was concerned there the ‘broids MAY be attached to other organs so he had me consult/informed consent with 3 other surgeons who would be “back up just in case” during surgery. Urologist (who put the stents in during surgery to assure bladder was not cut) and was there in case there was damage from the ‘broids since one was pressing on the bladder. The cancer GNY doc in case he got in there and there was cancer (Rare – firoids are typically uncancerous – whew didnt need him in the end) becaue my ‘broids had developed so quickly and the general surgeon in case the broids has grown on another organ (whew didnt need him either). Doc already told me I will need a C section to deliver- didnt bother me -as long as I can have kids I dont care how they get here.
2 days prior to surgery ate clear liquids and had “New Litely colon cleanser” – wasnt as bad as I thought. Surgery went well!! 5 hours and 2 hours to recover but I am fibroid free (long but I doctor is extremely careful). Doc first did a laprocspoic myo (through the belly button) to “Look around” . Then the “bikini” incision (about 8-9 inches which looks great already) in order to lift out the uterus and remove the “broids. He removed 6 (4 grapfuit size exterior) 2 apple size right under the lining of the uterus and one (forget that fruit size LOL) that had extended into the uterine cavity. He was REAL carful with that one not breach the uterus to much.
4 days in the hospital (could get up the next day so they could take that annoying catheter out and take off those leg cuffs they put on for circulation and I put on pajamas so I could get out of that ass out gown LOL), IV, antibiotics, made me do deep breathign exercises to assure you dont develope pnemonia. Clear diet for 3 days then soft foods (didnt really have an appitite anyway) Pain meds to manage pain and home to recover. Keep an eye on your tempature the first few days. Mine was up a bit first night or 2 but I was on Cirpo antibiotics for 1 week. One week follow up doc appointment went well – on track. Things are gong well – have to remind myself not to do to much (and I am not doing nothign really) Dont pick up anything over 5 lbs no driving yet (like I have somewhere to go), limit up and down the stairs, tender, sore still but getting better. After 2 weeks you will feel ok. I look ok but still healing inside. Feel sorta sad somedays but its normal as the super estogen pumpers (othewise know as the broids) hormones adjust back to normal. Now its week 3.Probably be another 3 weeks before I go back to work. Have follow up appointment after 2 periods to assure no scarring on fallopian tubes/ovaries/uterus (dye test forget the name). Doc recommends 6 months post surgery to try for kids. He notes fibroids can grow back but are more likely to regrow in younger woman than women over 35-40…but keep the weight down as estogren is produced in fat so the more fat you have the more the estogen pump is and that fuels firbroids.
Lots of women conceive after the surgery (that is why AM are usually done) IF there is no other kind of fertility issue with you our your mate (which is why I also picked a fertility specialist just in case it wasnt fibroids and the reason he ran all the fetility test prior to surgery). Literature and doc says 60-80% increase in ability to get preggers if fibroids were the problem and they are removed.
The surgery and recovery was worth it all. The pain I experienced over the months dealing with fibroids (I didnt wait long with the fibroid drama) is MUCH worse than recovering from surgery. I can see my feet again, bend to tie my shoes, no more back pain and my belly has shrunk!!
Check out OBGYN.net its a very helpful site as well with lots of links.
Hope this info was helpful
[Edited by EclecticGeek. Please visit the Abdominal Myomectomy thread for more AM experiences.]
August 30, 2006 at 2:29 pm
A few more things
I took iron supplements (get the Slow release ones they dont cause as much consipation) becuase the tiredness if often anemia and I gave blood for sugery just in case.. Didnt need to use it at all
Doc recommended against Lupon (to shrink) as they shrink typically 30% over 3 months. Plus the idea of temporary menopause was not somethign I wanted to do. ie if you have a 10 cm tumor and you reduce it to 7 cm what is the point ??
August 30, 2006 at 8:19 pm
Ally,
I understand what you are saying. It does cause one to pause. I actually knew hysterectomy was a possibility before my fibroids were even detected. At least a couple of women in my family have had hysterectomies for fibroids. I decided to put that option at the end of my list. It is great for those who want it and necessary for those who must have it but there still should be other choices. I want women to learn all they can and embrace the treatment that is best for them whatever that may be.
I’m glad that my sense of humor is of use now. My family taught me well.
Wow. Your trip sounds terrific. Enjoy yourself!
Please keep us updated. All experiences are helpful. Take care.
August 30, 2006 at 9:08 pm
fibroid free,
Thanks for posting a detailed account of your experience. You are now my abdominal myomectomy reference! I appreciate you adding humor because I can always use a chuckle.
Here is a live link to the site “fibroid free” mentioned earlier. They also have a forum.
OBGYN.net
Fibroid Forum
Thanks for the information!
August 31, 2006 at 2:19 pm
EclecticGeek
ah geee…I feel…so…honored…Hey feel free to ask Abdominal Myomectomy questions anytime…I got all the details, tips, questions to ask your doctor and personal experiences you need ….I would take a bow but although I can see my feet again its still hard to bend over
This is as a GREAT site and I am glad I found it…wish I found it earlier but if I can help shed light on anything I will. There are a lot of women out there that are experiencing the same thing and going crazy with no on the talk to. I know I did…I just had to read everything and anything dealing with fibroids..that keep me sane (well…the peanut gallery (ie Hubby) is still out on that assessment)
I too looked for fibroid weights (the only question my doc foo-fooed me on…yeah reminds me to ask him for those weights on the next visit – I know he has that now)- My back told me the ‘broids weighed 10 -15 pounds, my feet said 8 lbs LOL. So here is what science/weather geek found to date – tried the geeky math calulations…Volume (V) = LxWxH ok then Mass=Vp (vol x density) ok but how do I get the density?? CLass time to put your pencils down and turn off the calculators….AHHH I am not finished YET!!!! Then I searched some clinical abstracts and I did find a couple of abstracts listing average weight in surgery comparisons….this is fuzzy science from a Microbiologist/Biochemist so dont kill the messger… it was noted that an 9 cmx 3 cm ‘broid was listed on average as 350-400 grams. Ok so 1000grams = 2.205 lbs or 1 g = 0.002205 pounds (lbs) sooo….. 500g = 1.1 ilb; 350 g= 0.77 lbs and 400 g = 0.88 lbs
again fuzzy math and it all depends on how DENSE the ‘broids are but its a good estimation…I guess….
September 1, 2006 at 5:28 pm
Thanks for being a resource. I’ve just started posting questions plucked from comments. It’s taking longer than I thought but I will have an abdominal myomectomy question up soon. That way, people with AM questions can ask in that specific post and people with AM answers (like you!) can respond. Will also create a FAQ page to make it easier to find the questions.
[Edited to add: FAQ page is now the Fibroid Forum.]
OK. Fibroid weight. I think you’ve helped us to get a giant step closer! I made a comment here about finding an abstract that involved pi. When I started reading what you said about volume, it clicked. Density is a problem but also shape. Women are getting different dimensions for the fibroids. Some get three (i.e. 7cm x 8cm x 9cm) and can use the formula you provided. More rectangular I guess(?). Some get only one (i.e 6cm) and would need the formula for a sphere (hence pi). For two dimensions (i.e. 9cm x 3cm), maybe use a cylinder calculation(?) that also requires pi. Anyway, I’m working on a post about it with lots-o-links including a neat online calculator that determines volume. Hopefully, we can get a discussion going.
I’m so glad you found the blog! When I was going through some of this stuff, I kept looking for a personal and informational yet humorous site. Decided to start something to get my thoughts out there. Cool and tickling that other women can relate.
September 3, 2006 at 3:38 pm
Hey there,
This web-site is GREAT!! Refreshing to find a site about fibroids that cuts out all the medical jargon and isn’t looking to sell some miracle supplement.
I’m 28 and just found out that I have a fibroid behind my uterus (4.7cm). The doc suggested going in to get it checked out again in November (to track growth) as my husband and I want to try to have kids soon. I was just wondering if any of you have done research on diet concerning fibroids besides wha’t listed above or could recommend any sites.
I eat almost 100% organic and try to limit my intake of meats and dairy products. I don’t have any symptoms, but am trying my best to take the preventive medicine root as I understand that I’m relatively young to have developped fibroids and figure that it has plenty of time to grow.
[Edited by EclecticGeek. Please see the fibroids and diet thread.]
September 3, 2006 at 7:39 pm
Hi,
I’m in the process of posting questions to make it easier to find answers. Soon, there will be a post on diet and fibroids with the links you’ve seen here. That way, people with specific info can comment there.
[Edited to add: fibroids and diet thread is up. Please visit.]
In the meantime…
A few days ago, I did find something on WebMD. I was looking for general fibroid stuff but the article also contained info on diet and herbs. If you scroll to the bottom of page 3, you’ll see a section called “What to Eat”. Page 4 has herbal information. The article talks about meat/dairy and estrogen production. I’m familiar with this. Had not heard of vitamins, herbs, and the role of your liver in conjunction with fibroids. I guess that would fall more under alternative therapy but I’ll include it here. You can skip it if you’re just interested in food.
I cannot recommend the supplements per se but I will pass along the information. My advice is what I plan on doing when I get a spare moment. Read through the WebMD info. Check out the supplements using sites like Medline Plus or NCCAM. Search on PubMed, PubMed Central, or Google Scholar if you want to find research papers on these supplements and their effects on fibroid growth. (Finding papers in this area would be exciting indeed.)
Diet and Fibroids (WebMD)
Herbs and Fibroids (WebMD)
Drugs, Supplements, and Herbal Information (Medline Plus)
Dietary and Herbal Supplements (NCCAM)
PubMed
PubMed Central
Google Scholar
For those interested in herbal supplements, remember to do your research and talk to a health care professional before making any major changes.
Hopefully, others with fibroid diet information or experiences will add comments. I’m so happy that you aren’t dealing with symptoms and taking steps to be proactive. Glad you found the site and you like it. That means a lot. Post again if you have additional questions or thoughts.
September 3, 2006 at 10:25 pm
Hello, I have a fibroid on my right side, I have experienced horrible pain…. A month ago I had to be rushed to the doctor it felt like I was having contractions…. Has anyone experienced this type of pain. I am having a hysterrectomy in a week, anyone have pain like this and has had luck losing weight or at least has the abdomen gone down in size. I have a very enlarged uterus. I hope I see good results and feel better.
September 4, 2006 at 1:04 pm
Hi BOOBOO,
(I removed your previous post because it appeared to be duplicate. I hope that’s OK. Just wanted you to know.)
I experienced a tremendous amount of pain (cramping) when my body was trying to expel very large blood clots. My uterus would contract to force the clots out. The pain from cramps can be horrible.
I do not have a personal hysterectomy experience. I’m working on getting things more organized here so people with experiences can connect with people with questions. I see weight loss is a popular topic. I will dedicate a future post or two (or 3) to cover this as well.
It is good that you have sought treatment. I also hope your results are positive and you feel better. If you have additional comments, don’t hesitate to post them.
September 5, 2006 at 2:54 pm
wow, interesting. I’m going in for AM tomorrow. I have one 9 cm fibroid in the lining of my uterus. Classic pains. I am on Lupron (2nd month) and apparently it did shrink my fibriod some, but it did NOT stop my menstruals. In fact, as of today I am on day 15 of a lighter than normal period but a 15 day period nonetheless
. Of course, what happened, this gave me a low blood level so I may have to have a transfusion, but I just can’t wait to get this all done. Reading fibriod free’s extensive post made me less nervous about the surgery. Yay.
September 5, 2006 at 5:41 pm
one day to go…glad my ramblings helped make you less nervous about sugery….things will go well for you!!!
Here are a few post- surgery- in- the -hospital tips….
1) Try to get out of that hospital bed ASAP even if you stand for a while! if you do that they will take the catheter out and you will get your circulation going. Dont wait for the nurse to ask you…ask her/him “Can I get up now?”
bring something for a headache (non aspirin) I got a plain ole headache and plain ole mortin was not on the docs order…
2) I hovered for a while to pee…was more comfortable than trying to sit down and get up..(hell I already had to drag that IV pole with me)…they may make you pee into the “hat” (plastic thing on toilet to collect urine) to continue to measure your urine output for a day or so post catheter
3) when you stand up DONT lean over -try to stand straight up with shoulders back (not quite like ballet class) it hurts less if you dont crunch those non working abdmonial muscles
4) of course have a pillow to press against your belly to cough/laugh (my hubby keep cracking jokes)
5) bring some EXTRA strength GAS X – that will really help with the “truck driver winds”…and will help you feel better…its hard to fart when those fart muscles dont work so good. walking helps too. The gas will last for a few weeks as your insides get back to normal
6) If you feel nausea from pain meds (I only got nausea once for a few minutes)- quickest way to help that is a cold towel on the back of your neck (anti nausea meds may not be prescribed by your doc then you have to wait for the nurse to get the doc to allow it and its 2:30 in the morning yada yadda…ice cold towel on back of neck
7) speaking of 2 am – they check your vitals a LOT expecially the first 2 nights….felt like every hour (arent we suppose to be getting sleep??? …)
9) take the pain meds and dont let yourself get in pain – its harder to reduce pain once you are in the cycle of pain. Ask the nurse to give your something (ie crakers, graham crakers) if you can when you take the pain meds
10) they will probably gives you antibiotics by IV – it can sting a little – mine was every 8 hours
11) you may pass clots – its ok especially if they are removing ‘broids from the lining
12) pajams and slippers made me feel better
13) A cold towel on my tummy helped to take the “heat out”
14) My blood pressure went up sometimes (and I have no issue with pressure) depending on my level of pain…its normal
15) The lemon jello and water ice was like a gourmet meal but the clear broth (beef or chicken) is a salt-less bullion cube…yuck!
[Edited by EclecticGeek. More AM experiences can be found in the Abdominal Myomectomy thread.]
September 5, 2006 at 9:15 pm
fibroid free,
Thank you for your ramblings! I appreciate every time someone has something to share here and I know others reading this do, too. Your personal thoughts, detailed information, and humor really are helpful.
September 6, 2006 at 3:10 pm
Hi,
Just wanted to say your website’s (especially the recent comments from Fibroid Free) been a great help to me over the last few weeks. I’m a database administrator from the UK. My GP sent me for further tests 5 weeks ago, after a smear test showed my uterus to be enlarged since then I seem to have been on the fastest rollercoaster of my life with Ultrasounds, Ovarian Cancer test, MRI scan. Last appointment with the gynaecologist revealed I have a 10cm broid and am now am on waiting list for an AM in a few weeks. Reading through this has kept me sane an more prepared for what I’m going to hear and what to ask the doctors. I’m especially looking forward to the Yummy sounding clear broth !!!!
September 6, 2006 at 6:32 pm
one day to go,
I’ve been thinking of you. Realized your surgery was TODAY. I know you won’t see this anytime soon so I’ll just have to send out the positive vibes. Glad what “fibroid free” posted was so helpful. Best wishes with your recovery.
September 6, 2006 at 6:50 pm
Pixiebell,
Good to hear that the site helps. I’m happy when one visitor can help another. (Thanks again, fibroid free!) Things can get hectic with the series of tests but your resolution is around the corner. I appreciate you sharing your story. Post again if you have additional thoughts or questions.
P.S. Why is everyone “hating” on the broth?
September 9, 2006 at 12:38 pm
I was just diagnosed with Fibroids. Glad I finally have an answer as to why I am so anemic – I woke up one morning not being able to breathe, went to the ER and theygave me two pints of blood – I am so scared of my period. My last one was 16 days, lots of clots etc. I just keep taking iron (130mg a day). My question or opinion I am seeking a response to is this: I am 49, premenopausal, already had kids – should I consider a hysterectomy and something less invasive with the risk of them growing back. I was thinking i could wait 3-5 years until menopause is over, but loss of blood scares me and they will just grow. My are submucosal. (Sorry for the mispellings). I look forward to hearing from any and all. thanks for reading, Diane
September 9, 2006 at 4:53 pm
Yes, the anemia was what caused me to finally get help. I knew I had fibroids but didn’t make the connection. Walked around all lightheaded trying to figure out what was wrong. It finally got so bad, I had to go to the doctor.
With me, I wanted UFE because it was less invasive. I couldn’t have it done until I had a hysteroscopic myomectomy to take care of a couple of submucosal fibroids that would possible cause problems. My myomectomy was so minimally invasive (no incisions), it was outpatient. Both procedures have gone well and I am happy with the results.
I will leave that Mayo Clinic Treatment Guide link again because it goes through several options (hysterectomy, myomectomy, drug therapy, uterine artery embolization, and focused ultrasound as well as others). Some of my experiences can be found in the anemia, surgery, and minimally or non-invasive categories.
Look at all the options. You have many. Talk to your doctor about them. Ask questions. Get a second opinion if needed. I know this is scary but you are moving forward. You are starting to understand and take control. So, read through the information, listen to our personal experiences, and then apply what you have learned to your situation. Everyone deserves to feel better.
Post any additional questions or concerns you may have.
September 10, 2006 at 11:16 am
I’m at home now! Even though I didn’t get to read fibroid free’s post after mine everything was right on (except I did love the plain broth). The most annoying thing was the 2 hour vital checks and the 2:00 a.m. blood tests. There was no transfusion but I am no officially anemic. My blood level at its lowest on Thursday was at a 5. So they sent me home with iron pills. My first real bout of pain was as I was walking into the house crunched over in pain, my friend standing in the doorway made a comment as she took my arm about this being us in 30 or 40 years. Let’s just say I could NOT stop laughing and I had no pillow or towel on my abs so IT HURT IT HURT. Today is day two at home and I actually ventured outside and walked up and down my street twice. lowly but twice. I haven’t been in any unmanagable pain. Today I haven’t taken a percocet, just ibuprofen and my iron. I did walk bent over for a bit, today I can actually walk straight.
ElecticGeek – thank you for thinking of me. I can’t wait to see how normal my life will be after I heal. Yay
September 10, 2006 at 1:58 pm
I’m so glad you are home and in the recovery phase. It looks like things are going well. You are walking around straight and managing the pain. Hip, hip…hooray!
I appreciate you returning here so soon after your surgery and posting about your experience. It really does help others. Come back anytime with questions, concerns, thoughts, or ramblings. Take care.
(Thanks for loving the broth.
)
——————–
*Adding a note: Saw a comment today in the Feedback section about iron pills and stomach pain. Thought I would come back and stick a link here about tips on taking iron pills. (Scroll down near the bottom of the page.)
September 11, 2006 at 11:22 am
So glad everything turned out well and you are home recovering….just remember to take it easy – you had major surgery… take out time to heal and pamper yourself….
Yeah fibroids no more!!!
September 13, 2006 at 9:16 am
Hi – there, Im Bren from South Africa -
Just found out 2 days ago that i have Mutliple Fibroids – since reading these posts – have managed to link a few things I didnt think where related. Couldnt figure out why i was so huge around my tum – Would also like to know how much they weigh – My doc told me the ones i have could weigh bet 6 – 8 kgs – they are about 7×6x8 cm- if this helps- just an approx.
Thanks for all the info
September 13, 2006 at 1:42 pm
Hi,
I have a post about fibroid weight. It has formulas to calculate volume. Going from volume to weight is a bit of question mark because we don’t know the density of a fibroid but it’s a rough approximation.
For a 7×6x8 cm fibroid:
volume = 7×6x8 = 336 cubic cm
If we assume 1 cubic cm = 1g then,
336 cubic cm = 336g = .336kg = .739lb
Remember, this is just for one. Click this fibroid weight link and read the post to find out the details behind the calculations. You can post a comment there as well.
Glad the site is helpful. Thanks for visiting!
September 22, 2006 at 8:20 am
H All
Very useful reading the experiences of others with fibroids
I’m going into hospital on 27th September for a AM on a 13cm x 9cm subserosal fibroid. I have been experiencing quite a lot of pain due to some degeneration and feeling very tired, so although apprehensive about the operation I’m also looking forward to getting my visitor removed.
I would really like to know how much this weighs, how quickly my stomach will go down and what pain killer they are likely to give me in hospital? Can anyone help???
[Edited by EclecticGeek. Another popular thread - post-Abdominal Myomectomy.]
September 22, 2006 at 4:15 pm
Hi Tigger — ouch. I didn’t have my fibroids degenerating before my UFE procedure, but I hear that is painful. Hang in there! A 13 cm x 9 cm fibroid is big, to say the least. 13 cm = 5.2 inches (2.5 cm = 1 inch). Are you having a myomectomy or a hysterectomy? I believe that they can weigh and measure your fibroid(s) once they’re removed. My friend, Susan, got a nice little picture of her fibroids after her myomectomy (“getting the gang together for a group picture, priceless” is what she wrote underneath it). She also lost about 15 lbs after her procedure, but it did take a few weeks for her swelling to go down. I believe that Fibroid Free on this site had a myomectomy, so look under her name — she’s got great messages. Keep checking and posting on this site — it’s been a great help with me and my fibroids!
September 22, 2006 at 6:02 pm
Wow… I posted in August and there’s so much more info now. This site is wonderful, electicgeek.
I went for an MRI and was confirmed with having 2 fibroids pedunculated (connected by stalks) subserol, both towards the lower uterus, one in back (10cm) and one in front (8cm)-geez, messing with #1s and #2s!!. Anyways, I met with a surgeon fully expecting him to recommend AM becuase I wanted to maintain fertility. But he was all gung ho about doing it laprascopically. So eager that he prob would have slap me on the table right then and there. which made me a bit nervous.
Has anyone have large fibroids on the outside of the uterus removed laprascopically? Any complications, like damage to bowel or bladder?
Fibroid Free – your surgeon sounds wonderful, I don’t supposed he’s in the New York City area?
Oh, I also ask the doc about parasitic fibroids, and he pretty much said its rare but he has seen a couple attached to the bowel and they just snip off a section and reattach the bowel. (yes he was that breezy about it)
Another weird thing, my MRI said my ‘broids were about 9cm but I can feel the one in the front very distinctly and it’s way more than 9cm even after my cycle when it is supposed to be smallest. Anyone experience a discrepancy between their MRI and actual size removed. Concerned because I read that surgeons don’t do laprascopic procedure on very large ‘broids.
I found this site which rates doctors, its such good idea but I think they need more ratings. I found my ex bad gyno on there and I aded my 2 cents.
http://www.ratemds.com/index.jsp
Thanks all for sharing and for those recovering from surgery, hope y’all all feeling well!
[Edited by EclecticGeek. Used the link as part of a thread on evaluating/rating doctors. Thanks.]
September 22, 2006 at 9:48 pm
Aly Fibroids
thanks for the plug LOL I try to put it out there….I know I ramble but I have a lot of info to share…gald the gals are finding this site….
Tigger /El
Check out my post on the “how are you feeling after abdominal myometocy forum” .PLEASE GO THERE I have posted details in the past but will repost all the info on this AM forum I have posted before (so we can chat about whatever is on your minds…..got a question…ask….I am not a doctor….but I learned from experience) . I will give you all the ins and outs about my personal expericence with AM
(EclecticGeek – oh super webmistress – the smart women withOUT fibroids LOL- I hope you can edit my post to add all the links if necessary – you know I am gonna put it out there…ramblins’, gossier..all that LOL thanks for dealing with me… LOL) I am so excited I can help other !!!! YEAH its like a spirtual awakening!!!!
PLEASE PLEASE go to the AM post ladies…I am tryign to “Follow the webmasters requsets” to post to the appropriate forums….” man this site has GROWN in teh short time I have been here….shoot..all the other sites I tried to learn from – I direct them to this site…all the info you need is there……
drum rol…dum dum dum……
And so the stpory begins…Once upon a time there were fibroids…..
[Edited by EclecticGeek to add link.]
September 23, 2006 at 10:03 am
El,
I love the rate the doctor site..I added my doc to this.
A skilled surgeon can remove the broids laprascopically. My broids were about the same size by MRI – bigger by surgery time 5 months later. My doc’s plan was to start with Lap (through the belly button due to location) and if too big – which they were once he got in there…and he figured go to AM. Ask the doc WHAT IF you get in there are they are too big then what???? AM ???
attached fibroids are uncommom but my doc asked a general surgeon to be on call just in case they had to deal with another organ becuase although a surgeon that was not HIS specialty (my doc took it real serious becuase one was on my bladder and the other on my spine/anal area) didnt need any other doctors in the end
September 23, 2006 at 10:31 am
Fibroid free
Your sugeon sounds great… would he happen to be in the new york city area? I have an appointment for a second opinion for this coming thursday, what are some of the questions you asked your surgeon? Maybe there can be a forum like “How to grill/screen your gyno” or “Surgeon Interrogator” where people can suggest good questions for the docs.
Boy, I really don’t want an AM, the recovery time is so long and painful…
September 24, 2006 at 11:31 pm
Tigger:
I’m sorry you are in so much pain from the degenerating fibroid. Happy that you’re moving forward with a treatment plan. Visit the post-Abdominal Myomectomy thread in the Forum for lots of good info from fibroid free.
For a 13×9 cm fibroid: (cylinder)
volume = (3.14)(4.5)(4.5)(13)= 827 cubic cm
If we assume 1 cubic cm = 1g then,
827 cubic cm = 827g = .827kg = 1.819lb
Check the fibroid weight thread for details on how we came up with this calculation. Post any other questions or concerns that you have. We are here.
Aly Fibroids:
Your friend Susan sounds like a blast. Tell her “hi” for us. Glad the site has been so helpful. Thanks for returning the favor and being so helpful to others.
EL:
Welcome back! Thanks for the compliment. I am inspired by the women who post here and trying my best to be of help. That doctor rating site is a good link. I am working on a couple of posts about picking doctors. This will come in handy. “Grilled gyno” is funny. Thank you for putting the word out about the site.
[Edited to add the "picking doctors" posts:
How do I find a good local fibroid doctor?
How do I evaluate or rate a fibroid doctor?]
fibroid free:
Thanks for the cues to add links. You make my job easier. Post-AM thread is a hit. Cool! It really does feel great (uplifting) to know you are helping. I also appreciate you getting the word out.
———–
Big THANK-YOU to everyone for asking questions, giving answers, and helping out!
September 25, 2006 at 1:41 pm
Thanks EclecticGeek – LOVING the post AM thread..You make is all possible.. hummm need to go and add somemore stuff there now….
EL – my doc is in the Phila area…. I will put up the questions I asked my doc on the Post AM thread
Just food your thought…although AM has a longer recovery period…AHHH GOT YA….go to the AM thread I will continue there……
September 28, 2006 at 4:28 pm
I came across this site while researching information about uterine fibroids and found it reassuring to read the comments from other sufferers. I am 52 and started having symptoms from multiple fibroids about a year ago. As my menstrual cycles had become irregular and I was having terrible hot flashes, I was hoping that menopause might bring with it a decrease in the size of my fibroids and I might be able to wait out the symptoms but finally decided enough was enough and I am having a laprascopically assisted vaginal hysteretomy ( going to try and keep the ovaries). The abdominal pain, bloating, increased abdominal girth (thank goodness for elastic waist bands), constipation and urinary stress incontinence has increased as the size of the fibroids has increased and I am looking forward to the surgery. October 25th can’t get here soon enough as far as I am concerned. My gynecologist performed hysterectomies on two of my sisters for fibroids with no complications so I feel confident in his abilities. I am glad for all of the posts because, even though I am a nurse, I am a woman first. Thank you all for your comments and I wish all of you well as you grapple with this annoying condition. Peace.
October 1, 2006 at 9:15 pm
So talking of symptoms here. I am amazed at how quick the onset of symptoms are especially if the fibroids have been growing for quite a while. Started bleeding (non-period related) two weeks ago, about when sex became quite uncomfortable and has progressed to the point of impossible. Within the last week, pain has become a constant in pelvic area and left abdomen. The fatigue/weakness makes functioning increasingly difficult. I am incredibly cranky and will tear up at the slightest provocation. I have been seeing doctors for over six months for headaches and dizziness and had no answers. Wondering if fibroids cause basically PMS symptoms 24/7. Trying to wait till November till I have been at my job for a year so benefits such as medical leave will kick in but the progression in the last two weeks makes it hard to even picture holding out two more weeks. I havent really noticed girth or weight change though I am hungry non-stop now.
October 1, 2006 at 9:20 pm
One last symptom post: I remember someone asking here about anyone else with swollen lymph nodes. Dont know if there is a connection here, but have had swollen lymph nodes in my neck for over six months. Docs havent known why but have shrugged it off. Now I wonder if there is a connection.
October 4, 2006 at 1:14 pm
EcleticGeek, thank you for this blog! I am 37 y.o. I had an abdominal myomectomy 3.5 years ago. At that time, my GYN said that there were fibroids she could not remove. I have symtomatic fibroids (back/leg/abdominal cramping/frequent trips to the bathroom, etc.) and there is not a day that I do not experience pain from them. Now I am coming to grips with the fact that I will have to have a hysterectomy. My only problem is that I would like to have laparoscopic hysterectomy instead of a abdominal hysterectomy. Does anyone have any information about whether a laparoscopic hysterectomy is an option for women who have had a prior AM?
[Edited by EclecticGeek. Visit the thread on needing second fibroid procedures.]
October 4, 2006 at 9:48 pm
I had a 12 cm fibroid removed by abdominal myomectomy in June and my periods (3 cycles later) are still heavy, with clots and much cramping. I had an ultrasound done recently showing only small 2cm fibroids left behind but I am still in so much pain around my period……anyone have any suggestions? I take muscle relaxants and use heating pads but they are still terrible. Help!
October 5, 2006 at 6:29 pm
check out the FORUM How are you feeling after your Abdominal myomectomy?” you can post these AM questions there also……
NIcki too…i LOVE your question…I wonder that myself. I had a AB Myo 8 weeks (plan to have kids) but wonder once I am done with kids…then what if the broids grow back then what?? hysto? which one…Hope you get a response to this one…..
Vicky…..oh YEAH!!! I was wondering the same thing..I even posted a question on the the FORUM -Had my AM 8 weeks ago and well have had 3 periods in the last 45 days…. uggggg . THe first (the week after surgery was horrific, the second, shorter in duration but still VERY heavy and this one (15 days after the last one sigh) heavy-ish but lots of cramping and pain too….. My doc said it takes a while to get your cycle back to normal…. I am thinking …maybe it hurts more due to the surgery and your uterus is still healing (takes at least 3 months to heal completely internally) . If those 2 fibroids are around the uterine lining, then your uterus may still be having a hard time contracting during your period to stop the blood flow.
There is another discussoin/forum on the site (somewhere..EG this site has gotten so multi dimentoinal…LOL its great) about using birth control pills to regulate bleeding. It may be somethign to discuss with your doctor? Has your dcotor ruled out edometriosis??
[Edited by EclecticGeek to add links.]
October 8, 2006 at 1:23 am
SusiQ:
Glad you found the site. It is reassuring to hear from others. Thanks for sharing as well. The symptoms can be bad so I am glad you are moving forward with a treatment decision. Sounds like you have a good doctor. Best wishes on your upcoming surgery. Post again if you have any other concerns.
Joyous:
Weakness/fatigue sounds like anemia. That’s what finally caused me to drag myself into the doctor’s office. I felt faint ALL the time but had no clue why. Please read these posts and talk to a doctor about anemia:
Uterine fibroid tumors and anemia?
Big fat purple iron pills to treat my anemia
Not sure about the connection with swollen lymph nodes but it’s interesting that you are experiencing this also.
Nicki Too:
You are welcome. I’m sorry you are going through more symptoms and now have to consider a second procedure. I put up a general question in the Forum about needing a second fibroid surgery:
Has anyone needed a second fibroid surgery or procedure?
I didn’t find a direct answer to your question but here’s a page on candidate criteria. It didn’t mention anything about being excluded because of a previous surgery. I also found a paper that looked at women who had a second surgery after AM. Some had another AM or hysterectomy. Still not a direct answer but once again, I’m not detecting where you would be definitely excluded. I’m interested in hearing the responses to the Forum question.
Vicky:
fibroid free mentioned the AM forum. That’s a good place to hang out, read about other AM experiences, and post your thoughts. I’ll just say that my two most problematic fibroids were small. They were inside the uterus and my GYN said one was on top, one was on the bottom, and they were almost touching each other. Blood would pool back there and form huge clots. When my uterus finally decided to contract … YOW! Fibroid size is really important but also location (AKA the real estate). Sorry you are still struggling.
fibroid free:
Yeah. The site keeps a-growin’. Working on some ideas to get it more organized. I appreciate you pulling out the big weedwhacker and continuing to plow through.
——————-
*wiping my brow*
Whew. Thanks for keeping me on my toes!
October 9, 2006 at 4:45 pm
Holy awesome blog, Batman! THANK YOU!! Geeks Unite! Web Business Analyst here schlepping around a grapefruit. Ms. Site Goddess, I am glad that you had a positive experience with the hysteroscopic myo and am also grateful for the advice on before and after surgery stuff from everyone. My intramural womb mate is 9.2 x7 cm and it has taken up residence in the entire posterior wall. It is very high maintenance, causing unholy pain and small clots and requiring many trips to the loo, to the point of being on medication and in physical therapy. My laparoscopic myo is scheduled for Dec 1, 2006. I am hoping they won’t have to convert to an AM; I am right on the border. As I sing opera too, I don’t want to chance Lupron possibly screwing with my voice.
Vicky, I hope this pain resolves!! Good healing to all!
with thanks,
-divageek
PS I asked my doctor how much this sucka weighs – he estimates around 2 lbs.
October 17, 2006 at 7:54 pm
anyone have any recommendations on a expert fibroid surgeon in NYC. my long time gyno who is also a surgeon has recommended hysterectomy. i am dealing with other health issues and i am 48 so no kids in my future. he may be right but i want to check out all my options so i want to get a second opinion but i have had a tough time finding the right doctor. thanks for all the info here. this is a great place!
October 18, 2006 at 10:06 am
Hey Beth,
I’m from NYC and have been living with fibroids for a couple of years and I’m opting for surgery soon(not exactly sure when yet). Mt Sinai does minimally invasive surgeries in their gyno department, I saw Dr. Ascher-Walsh and he seemed to be very patient, knowledgeble and does not pressure you into any particular type of procedures.
Not sure what type of fibroids you have, you should ask about abdominal myomectomy(just take out fibroids), robotic myomectomy (it’s what I am choosing because you can keep a functional uterus with much shorter recovery time) here’s a link to a video of the procedure, [Google video for robotic myomectomy], and defn ask about the non surgical options such as embolization and ExAblate (destroy them suckers by soundwaves)
here’s a link to the doctor info http://www.drascher-walsh.com/
good luck!
[Edited by EclecticGeek to shorten Google video link. The site theme I'm using now sometimes makes long links and the words around them look funny (at least, on my computer). Don't let this stop you from posting links. I'll edit when necessary.
]
October 18, 2006 at 12:40 pm
if you don’t mind a drive to Boston I can refer you to my surgeon – Dr. Keith Isaascon. He runs the minimally invasive gyn surgery unit at Newton-Wellesley Hospital – where I am having a lapro myo (see my Oct 9 post in this thread). He is a very no-pressure and approachable guy who takes on the tough cases, like mine
.
Link to NWH:
http://www.nwh.org/itemDetail.asp?categoryID=255&itemID=16189
To El: oooOOooo robots….cool!! I’ve gotta get that link to work…
-dg
[Edited by EclecticGeek to add link to Oct 9 post.]
October 19, 2006 at 8:00 pm
divageek:
Thanks for the kind words. References to Batman always make me grin.
I was wondering about your name but you being an opera singer makes it self-explanatory. This former Music major thinks that’s pretty cool.
We have a little fibroid weight project going on here. Don’t know if you’ve seen it or not. Thanks for the doctor info. I started a thread on finding fibroid doctors (see link below).
Sorry I do not have a laparoscopic myomectomy thread up yet. It is on my long list. Once I get it posted, feel free to contribute there (pre-op, post-op, thoughts) as well as any other thread. Thanks for your visits.
[Edited to add: laparoscopic myomectomy thread is now up.]
beth:
There’s a thread on finding a fibroid doctor:
How do I find a good local fibroid doctor?
Between what’s posted here and what we can generate there, I think you should be able to track down one. Good for you for checking all your options.
El:
Hey, disco queen!
Thanks to you also for the doctor info. Visit the “finding a doctor thread” if you wish to write more. Since you mentioned several procedures, I’ll throw in links to my posts (of course).
Get your fibroids on the dance floor and do the robot
Does anyone have an experience with ExAblate (MRgFUS)?
How are you feeling after your Abdominal Myomectomy?
What to expect from a Uterine Fibroid Embolization
——————–
Just a note. I’ve created a Fibroid Forum at Oprah.com. Still pretty new. I’m getting so many comments on this site that I thought it would be helpful to have a more “traditional” forum as an option. That way, you can start your own threads and reply directly to posts. It’s just an option. Please feel free to continue to comment here. For more information, see this post that lists the benefits:
I started a Fibroid Discussion Forum at Oprah.com!
October 23, 2006 at 7:20 pm
I am 43 yrs and have have had 4 myomectomies, the first one at age 25.My fibroids seem to grow back evry 6 yrs with all the typical symtoms such as back pain ,cramps and heavy menses.I’ve been trying to have a child that’s why ipted to take the injections to shrink the fibroids for my last operationwhich took place in May of 2006. My gyneacologist said that they help reduce bleeding and the size of cuts to the womb.However I’d previously had surgerywithout the treatment and presently have lots of scar tissue.I’ve never had a weight problem and have always had a diet with lots of veggies. several years ago i changed to whole wheat bread since I take so much iron tablets that i’m often constipated. In my second operation it was found that my fibroid s were stuck to my right ovary abd fallopian tube. Luckily he was able to remove it without damaging any of them. In the last operation the fibroids got stuck to both my bladder and bowels. this doctor was also able to sucessfully remove them without damage to them. I still want to have a child and the future looks dismal. I’ve tried IVF and it just didn’t work.I also got similar but different growths in my breast. My doctor says its my hormones doing this. I am at the end of my rope.
From what i’ve read fibroids seem to be very common in black people(african decent)
Any one with similar case wants to share their experiences?
October 24, 2006 at 1:25 pm
Angela,
Sounds like you have had a tremendous battle with the Broids…yeah its the estrogen that does it…estogen dominance to be exact epecially if you also has fibrocsytict breast (I think that is the name – my mom has those – best friend just had one removed as well) ….non cancerous tumor in the breast. Yeah diet can be a big influence…red meat, chicken, all the estogen and hormones in the food today…the Pill…its hard. Sometimes doctors put you on the pill to regulate the estrogen levels (mine did) as soon as I got off to try and get preggers…VUMP!! fibroids…
It does get harder as you get older (I will be 40 soon and will be tyring again now that the broids are gone) and not only does fertiltiy drop (2-4% chance, having scarring from surgery does not help and the fiboroids throw off your entire endocrin (homeone) system so getting pregnant is difficult if not impossible an IVF still only gives you a 50% chance…. Hang in there post if you have qusetions or just want to “talk”
Fibroids % are much higher in Black women 40-80% on avaerage and sympomatic as well.
October 24, 2006 at 4:35 pm
Thanks to all you women who have shared your stories. I did not know i have fibriods untill i started experiencing inconsistencies and i mean load of trip to the washroom especially at nights. Difficulty falling asleep thereafter. Now my sleep has gotten worst and i cannot ping point any other cause for this. My doc, started to give me the impression that i am going out of my mind. Finally sent me to have xray down and realized that i have multiple fibriods, the largest which sits on my bladder. I have now decided to have embolization. Done having children, but thought trying embolization.
October 24, 2006 at 7:41 pm
thanks for the info!
October 26, 2006 at 9:23 pm
hey El: thanks again for the info. i am seeing your dr next week for a second opinion. he is evem in my insurance program. my current gyno is not. and thanks for getting this site up EslecticGeek! its been a big help to me and i am sure to others here.
October 28, 2006 at 3:02 pm
Angela:
Sorry you’ve had such a difficult time with your fibroids. I have a couple of specific posts in the Fibroid Forum that I hope you find helpful:
Has anyone needed a second uterine fibroid surgery or procedure?
Is anyone having fertility issues because of uterine fibroid tumors?
Can I change my diet to help with fibroids?
Once again, I’ll leave a link to this paper:
Etiology and Pathogenesis of Uterine Leiomyomas: A Review
It has good info about risk factors including parity (# of children), age, weight, diet, exercise, racial differences, and exposure to estrogens in the environment (xenoestrogens). According to this paper not only is the percentage higher but
I suggest everyone at least glace over this paper. It confirms that the changes a woman makes to better her health (diet, exercise, weight loss, etc.) are really important.
I wish you well as you continue to deal with this. As fibroid free said, post if something is on your mind.
fibroid free:
Thanks again for sharing your experiences.
desperate:
Please check this post:
How are you feeling after your Uterine Fibroid Embolization?
It has links to other posts about my UFE experience plus comments from other women about what they are going through. Keep posting if you have thoughts or questions. Best wishes.
beth:
That’s cool you are seeing El’s doc.
You are welcome. I’m just happy the site is helping. Keep us updated.
divageek:
The laparoscopic myomectomy thread is up. Don’t remember if I mentioned this or not.
October 29, 2006 at 1:00 pm
Hi eclecticgeek,
I’m 43, diagnosed with fibroids about 11 years ago. I’ve had two surgeries – myomectomy ‘96 and a hysteroscopy ‘02, and now my fibroids are worse than ever.
I’ve been doing research on a relatively new but successful non-invasive technique using MRI technology ( this is just one of the websites with information on the procedure – [ExAblate MRgFUS Treatment Locations])
It is supposed to work very well. I made an appt. with a doctor in my area that does the procedure. After two surgeries I was leary of the embolization process so I was very happy to find the information on the Magnetic Resonance-guided Focused Ultrasound (MRgFUS).
I just wanted to put this out there for all of you women that are suffering just like me. It is possibly a better alternative for so many of us. After two procedures the one thing that amazes me is this – the fibroids just keep coming back!
I will post again after my procedure – hopefully I can get it done before the end of the year. I wish all of you good health and the best treatment possible for you for your fibroid condition.
[Edited by EclecticGeek to shorten link.]
October 29, 2006 at 7:53 pm
Thanks for the link. I have posts waiting for you!
Has anyone needed a second uterine fibroid surgery or procedure?
New treatment uses sound waves to shrink uterine fibroid tumors
Does anyone have an experience with ExAblate (MRgFUS)?
Please post what you know there. ExAblate is so new that EVERY experience is really helpful (even evaluation and pre-procedure stuff). Best wishes and thanks for your visit.
October 30, 2006 at 9:59 am
Hello,
I have not had the opportunity of read all of the messages. I am 33. Last Tuesday I found out that I had 3 fibroids. The largest is 4.4 cm. I have one in the posterior, anterior, and fundus. What is considered large? Also does anyone know the average size of the uterus to require surgery?My uterus is the size of 4 month pregancy. I also have a 3cm cyst on right ovary. I don’t have children, Last Thursday I was hospitalized due to anemia. I was very close to having a blook tranfusion but didn’t. I have been having increase clotting and bleeding during menustration. I wanted to know the recovery period with the different surgeries for a woman who wants to have children. Very nervous right now. I have an appointment to see a gynocologist tomorrow and a hematologist next week.
October 30, 2006 at 10:40 am
Tameka – please check out the How are you feeling after an Abdominla myomectomty fourm. There is a lot of information specific to recovery from an Abdominal Myo
Fibroid size -Its not so much large as the location and how sympotamic the friborids are. Very samll fibroids can cause more trouble than a large non symptomatic fibroids
You can have a regular sized uterus and still have surgery ….again it depends on the type, size and location of the broids…
[Edited by EclecticGeek to add link.]
October 30, 2006 at 5:27 pm
Tameka:
The anemia is what caused me to finally seek help. In addition to the post-Abdominal Myomectomy thread that fibroid free mentioned, here are a couple of other posts:
Uterine fibroid tumors and anemia?
How are you feeling after your Laparoscopic Myomectomy?
Get your fibroids on the dance floor and do the robot
Is anyone having fertility issues because of uterine fibroid tumors?
Best wishes with your upcoming appointments. If you have any other questions or concerns, please post them.
fibroid free:
You are so right about size. My fibroids weren’t as big as some that have been posted here but my symptoms were horrible (blood, clots, cramps, anemia). These fibroid critters can be bad.
October 30, 2006 at 10:36 pm
Thank you EcleticGeek and fibroid free! I will keep you informed. I will check out recommended posts.
October 31, 2006 at 11:36 am
Its all about LOCATION LOCATION LOCATION LOL
So true Ecletic Geek….ohh my smallest broid of the 6 (which was submucosal) was THE worst…and the removal of it is taking the longest to heal…..and UGGG causing painful periods still (only until the uterine wall is fully healed doc says)
Tameka – your surgery options to preseve fertility are Abdominal Myomectomy and Laproscopic myomectomy
October 31, 2006 at 5:42 pm
Thanks Everyone. Today it was recommended that I have a abdominal myomectomy. although I was preparing myself I was still shocked when reality hit me. I have been reading this post and books on Fibroids and felt pretty informed and “strong” but when the surgery was recommended, I felt deflated. What concerned me was that the doctor said that the fibroids sizes were relatively small compared to my uterus size. She was concerned about the size and wondered if I had more fibroids than the sonogram or something else. She recommended a D & C to see what else is going on? Has anyone every had a D&C during their fibroid experience? Thanks.
October 31, 2006 at 8:00 pm
hey EclecticGeek!!
holy fast response, former music major! Do you still play/sing now? Deepest thanks for the lapro myo thread! i just posted to Mary’s post.
Fibroidfree – you are the info goddess – very helpful stuff!!
Hey Tameka, El, Maureen, Angela, Desperate, Beth, et all – thinking good thoughts for all of you courageous sistas!!
October 31, 2006 at 10:07 pm
Hey Divageek …Thanks….gald I can share what I know, read, heard…..
have to check and see what the ladies are chatting about on the Lap Myo forum…inquiring minds wanna know….
Tameka – well come on over to the ["How are you feeling after your abdominal myomectomy board"] and chat away if you have questions, concerns or just want to vent/rant LOL WE will help to get you back that strong-ness.
Often some fibroids can be missed or misread/misinterpreted in the CT scans and MRI scans. Sounds like you meant ???? Hysterosalpingogram (HSG) -Did you have that done?? tube in uterine with the dye and the – X – ray – test that examines the inside of – uterus – and – fallopian tubes? it could be possible that they missed some fibroids during the scans (or fibroids are “hiding behidn others” and do not show up on the films. The size of a couple of my fibroids were actally larger (in person) than the scan showed determined
My first doc recommended a D&C because she couldnt perform a endometrial biopsy. Turns out the doc that did my surgery could do the biopsy it so I didnt need a D&C afterall. The reason they wanted to do those test is to determine the status of the uterine lining (and this may not be the case) to rule out any types of cancer but most likely to see if you have adenomyosis – that is when the uterine lining infiltrates the uterine wall and causes the thickening and enlargement of the uterus. You may have that as well if the fibroids are realtivly small and your uterus is enlarged.
[Edited by EclecticGeek to shorten link. Is it just my computer that makes long links look strange?... Probably just MY crazy computer.]
November 1, 2006 at 4:48 am
thanks fibroid free. The information helped. It wil be a D&C.
November 1, 2006 at 6:08 pm
Tameka:
I started a new question in the Forum. Hopefully, that will generate some D&C experiences.
Does anyone have a dilation (dilatation) and curettage (D&C) experience to share?
Keep posting if you have additional concerns.
fibroid free:
Yes! Submucosal ones suck. I had those two that had to be shaved down during the hysterscopic myomectomy before my UFE. My doc said one was on top and the other was on the bottom and they almost touched. That caused blood to pool and clot resulting in me passing HUGE liver-sized clots and having catastrophic Noah-like flooding events. When I saw my commemorative photo from the procedure (one of the two fibroids complete with crater where doc had started shaving it down – totally cool), I just knew it was big. Asked my doc and he said that’s what he saw through the scope and it was magnified. Yeah, OK but still? When I asked how big, he made an indication with his index finger and thumb that was approximately the size of jawbreaker candy or a large cherry tomato. Dang. I have (had?) some other larger ones in other locations but these bad boys do not have to be large to cause problems.
divageek:
At one point, I played the piano, flute, alto saxophone, and glockenspiel plus took a guitar class and bassoon lessons. Also, joined a Recorder Ensemble (I love Baroque music!). I’ve been in a couple of choirs but my solo singing was reserved for my Sightsinging class (LOL). It is so hard to finish in music. I often tell people I switched my major because science is easier. I admire anyone who can do it. This includes my nutty brother (my reciprocal) who started in Biology and ended up finishing with two degrees in Music. Now, he’s the singer/musician of the family. I don’t play anything now but the radio/CD player (iPod soon!). Would like to pick up my flute again. *Sigh*…one day.
Thanks for posting in the new thread. I’ll go and stick my head in for a look.
Ahhh, my music. That’s why I refer to myself as eclectic.
When I get 15 minutes to spare, I’ll post more about myself and my crazy, geeky, artsy family on my often-neglected EclecticGeek blog.
November 4, 2006 at 4:32 am
I had forbiords in 1994 very painful and had to have a hysterectomy and had my bladder lifted at the same time, now its a thing of the past i have never been brothered anymore. I ‘ve heard people say sex with your husband isn’t the same but who cares Iam not married anymore anyway, but i feel good and don’t hurt anymore and I thank God the pain was reliefed from my body it was so great i would not have wished it on my worst emeny.
November 4, 2006 at 9:09 am
Great site, I have learned soo much, but have a couple of questions for everyone. Does anyone have vaginal or cervix pain with the fibroids, and lack of sleep. Also, I haven’t had many blood clots with my periods, and they seem normal, but feel anemic though I haven’t bled very much. Thanks for your replies.
November 5, 2006 at 9:01 pm
Hi Erin,
I had a ‘pressure’ feeling sometimes on my cervix not pain. My uterus (laden with fibroid hanging off it) was pretty heavy so that was the cause.
Lack of sleep…..oh I was so sleep deprived from being uncomfortable phyically (back hurt, swollen feet, getting up to pee every hour on the hour and having my hormones out of wack all the time)….. I was tired/over tired ALL the time so when I tried to sleep I couldnt…. Still making up for lost sleep now LOL
Anemic feeling – Try taking slow release iron tabs (the slow release help with the constipation iron supplments can cause), these fibroids will ZAP your energy.
November 6, 2006 at 5:24 pm
mary:
Sounds like you’ve been doing quite well! I have a post about hysterectomy experiences. Feel free to visit and leave a comment there. Take care.
Does anyone have a hysterectomy experience to share?
Erin:
I did suffer from lack of sleep (for some of the same reasons as fibroid free) AND anemia. I was tired, weak, and lightheaded. My hemoglobin level fell to 6.7 out of 12. Much better now.
Please see these posts:
Uterine fibroid tumors and anemia?
Big fat purple iron pills to treat my anemia
Iron pills, Lupron injections, and the return of little Miss Perky
fibroid free:
Yep. I sleep like a log now. Oh, yeah! LOL
November 9, 2006 at 4:57 pm
I had my D & C this past Monday. I was asleep for the procedure. I found out today that the sonogram that was done a few weeks ago was not correct. It had me with 3 fibroids with the largest being 4.4 cm. I was hospitalized two weeks ago and told the hospital to forward the CT scan to my gynecologist. The CT scan showed that one fibroid is 11 cm (width) by 7.8 cm. I was somewhat relieved because I was nervous that I might have adenomyosis with small fibroids. It makes me question the radiologist who interpreted the sonograms in the beginning. I went to see a Hematologist today because of my blood levels and will return to get results next week. While going thru this Fibroid issues, I am having gastrioinstestional issues that are affecting my health and anemia. I learn my surgery and D & C results on Nov., 20.
November 9, 2006 at 8:10 pm
Hi Tameka,
This imaging stuff is great but it’s not perfect. I had fibroids 8 years ago large enough to produce horrible periods and yet they weren’t even visible on my first sonogram.
I have a thread about anemia. Since you consulted with a Hematologist, feel free to also add information there.
Uterine fibroid tumors and anemia?
If the fibroids are pressing against your bowels, this will cause problems. Sorry you have to deal with that in addition to all the other fibroid-related issues. Please keep us updated on your progress.
December 3, 2006 at 11:28 am
Hi,
I have 2 fibroids. One small and one big ,about the size of a grapefruit. I’m only 30 and My fiance and I really want to have children. I want to save my fertility. I’ve been told a myomectomy is something to consider,but want to get another opinion because with after surgery for a myomectomy,I read that adhesions can result,and create scar tissue…need a second opinion.
December 3, 2006 at 11:31 am
Is there anyone,that had undergone any surgies,without getting a hysterectomey and have had a successful pregnancy? I would like to know how long you had to wait to try to become pregnant? What can I do to see if I can get pregnant,without the surgery,to see if my fibroid is blocking anything? Because we’ve been trying,but nothing has happened yet…
December 3, 2006 at 2:10 pm
Hi Ann,
You can check out the [FORUM]- Post Op Recovery – [How are you feeling after your abdominal myomectomy (AM)] or [How are you feeling after your laproscopic myomectomy]. A myomectomy is the only proceudres to remove fibroids and preserve fertility. I had 6 large fibroids removed (one was grapfuit size too) and my reproductive endocrinologist (RE ) othewise know as a fertility doctor said that the fibroids were causing my infertility (we had been trying for a while too and nothing).
So I had to go with a abdominal myo. Depending on where yours are you may be able to go with Laproscopic whci is less envasive , shorter recvoery time also.
On the AM thread I provided the information my doctor told me and a link to some journal articles talking about how fibroids can cause infertilty (ie the uterus and/or fallopian tubes gets distorted expecially with large fibroids; you are often not even ovulating or a fertilizied egg can not implant in the uterine cavity (especially if you have a submuccal fibroid in the uterine cavity like I did). It also talks about how the pregnancy rate increase dramaticlly (like 60%) post AM
The AM forum will give you infomration about a myomectomy and there are discussions about ahdesions and scar tissue on the AM forum too. I had a AM done in Aug and I have no adhesions and no scarring (none in the uterine cavity which is the key) as seen during my 2 month post-op HSG test (basically a dye x-ray of your uterus and fallopain tubes and ovaries)- All loooks good
You need to a make sure if you decide to get a myomectomy that you have the right doctor and make sure he/she is a skilled surgeon (ie there is a list of questions to ask your surgeon on the forum including how may surgeries have they perfromed that turned in a hystorectomny – my doc had none in 20 years ). I never though of a fertilty doctor for fibroids but fibroids are often the cause of infertilty. My GYN refered me to a GNY endocrinologist who refered me to a RE who specialized in fibroid surgery.. I am currently trying to conceive. I am almost 40 so time is NOT on my side…My doctor recomended waiting 3 months post op (It will depend on where your fiborids are located also for trying time) Doc wanted to make sure I am healed. Since he was a fertilty doctor he did a complete fertilty workup prior to surgery (hubby too) and all our numbers looks good so the assumption was fibroid infertility. Now that those monsters are gone I hope to get pregnant (and if not sigh on to IVF)
I bought a fertility monitor to see when my fertile days are (there are only about 2-4 days a month that you are fertile) and to see if I am ovulating. Also infertility is not just women sometimes its men….low sperm count etc
Your doctor will need to perform either a MRI, ultrasound or vaginal ultrasound or sonogram to determine where the fibroids are located and if there are blocking anything. A RE will also check your partner ’s fertiltiy as well.
A lot of women get pregnant with fibroids (my sister did) and dont require surgery. A lot of women get pregnant and miscarry becuase of fibroids….ya dont know. But if you have been tyring and you know when those FEW fertile days are then you need to consider the options.
There is another [thread about infertility] and a link to post myomectomy trying to conceive wedsite where plenty of women go on to get preggers.
Hope that helps
[Edited by EclecticGeek to add links.]
December 6, 2006 at 5:39 pm
Hello,
Nice site and very informative! I’m 32 yrs old and was dx with fibroids. It’s 7cm and he believes it to be on the outside of my uterus (subserol), however my Dr. said that he can’t tell if it’s on my uterus or my ovary (right side) but he believes it to be hanging off the uterus because of it’s “mobility” he says (whatever that means). I’ve had 2 vag ultrasounds and 2 CAT scan 1 of which was with the barium and dye injection. Like Erin who posted back in Nov., I don’t bleed heavy either and I’m very regular but I do have the bloated and full feeling ALOT!! But lately I’ve been extremely fatigue and sort shaky (weak feeling) and also short of breath. I have surgery Dec. 22nd, to have a laporaspocy done because he said it could be blocking my fallopian tubes. Anyone whose had the anemia part of this have you had shortness of breath too??
December 6, 2006 at 9:25 pm
Ann:
You received some great advice from fibroid free. Nothing more I can add except check the posts she suggested and feel free to leave any additional questions or concerns you may have.
fibroid free:
Thanks for the great response!
Kim:
I appreciate the kind words. Here’s the post that talks about anemia symptoms:
Uterine fibroid tumors and anemia?
In addition to the fatigue, lightheadedness, and weakness, I also suffered from shortness of breath, rapid heartbeat, and (I do believe) restless leg syndrome. I had so much going on that I didn’t realize it was all due to the anemia. After being treated for the anemia, I felt TONS better. Fixing the cause of the anemia (fibroids) was the icing on the cake.
Keep posting if you have more concerns. Best wishes with your upcoming procedure.
December 7, 2006 at 11:24 am
Thanks alot EclecticGeek!!!
I was told maybe a year ago I needed to take iron pills however I’m sort of hardheaded! I go for Post-Op today and I will let them about this. I was putting it off as anxiety but I guess I better go get some iron pills. It’s amazing that these fibroids will make you feel this way, like you’re about to just flat out croak!!!!
I want to share a website that I hope will help those who are looking for alternative methods of controlling fibroids. This lady is name Lorna Vanderhaeghe and her website is healthyimmunity.com. She shares alot of information in regards to horomones and she has a show that comes on every Tuesday online. She practices natural alternatives and she developed a formula called Estrosense for fibroids/ breast health when she was dx with them(which she has many other formulas with ingredients listed). It’s pretty interesting stuff and I hope it can help someone else. I plan on taking them after surgery to help prevent growth/reoccurence. I don’t know if this is the correct thread for this info so please post in proper thread.
December 10, 2006 at 4:31 pm
Hi Kim,
No problem. Anemia has a way of creeping up on you. I had no clue that it could produce such serious symptoms.
I have a thread that talks about alternative treatments:
Is there a natural alternative therapy or treatment for uterine fibroids?
Please be careful when evaluating these methods. I have information in that thread but I’ll leave a few links here:
Are You Considering Using Complementary and Alternative Medicine (CAM)?
10 Things To Know About Evaluating Medical Resources on the Web
This is how I personally evaluate treatments –
If I see this (or anything similar) associated with the product:
and a search on Google Scholar or PubMed produces no clinical studies or research conducted using the product, I cross it off my list.
Please remember to tell your doctor if you decide to take any treatment. Best wishes.
December 14, 2006 at 11:45 am
Hi everyone…I am so thankful I happened upon this site.
I’ve had fibroids for a couple of years, but just this past week visited by gyn due to a constant period. I also experienced a freaky episode of flooding, but because I am fifty, just figured it was part of this wonderful perimenopause state I am experiencing!
Well, after an ultrasound, apparently I have a fast growing fibroid sitting on the top of my cervix…well, the gyn started tossing around words like hysterectomy like it was something I needed to consider…the size of the fibroid is 6 cm.
Well, I really stared at her in disbelief when she referred me to a gyn specialist who just happens to specialize in female cancers….to discuss my “treatment” options. I said, “Do you think this is cancer?” And her reply, “I know it is fast-growing for not having been present in your last ultrasound 18 months ago.”
Later when I spoke with her by phone, I said could this just be a fibroid…and she said, “Yes”.
I mean, is it me or is that a little insane?
I have an appointment Monday, 11/18, but I am very very upset. Everything I read about fibroids indicates the buggers are not cancerous and hysterectomy is about one of the last things any doctor should consider.
The two and a half month period is a pain, plus the fact I have gained weight, but in the experience of you all, what should I expect from my consultation with the specialist.
Thanks,
Sunny
December 17, 2006 at 6:34 pm
Hi Sunny,
I think your referral to that specialist was more of a precaution for your “fast-growing” fibroid than as an indication of cancer. The incidence of cancer is rare (less than 0.1% of cases). I have a post that talks about it:
Are uterine fibroid tumors a sign of cancer?
I also have a post about treatment options. Under each option you will find links to my other posts filled with comments from women who have picked that option:
Just what are your uterine fibroid tumor treatment options?
Although I do feel that there are too many women having hysterectomies because of fibroids, for some women it is the best option. Fibroids come in all sizes and reside in different locations. What is best for you will not be best for another woman.
I have one more post to add:
What questions should I ask my fibroid doctor?
This one gives a list of questions to ask your doctor. I hope you are able to view it before your appointment but you can also contact your doctor later to discuss any of your concerns.
So, talk to your doctor, gather information, and make an informed medical decision based on your case. Best wishes with your consultation and let us know if you have other questions or concerns.
December 20, 2006 at 12:37 pm
Thanks for the info.
The “fast grower” was a fibroid, the type that grows from a stalk. Believe it or not, it had somehow prolapsed into my cervix-I was actually dilated!
The specialist snipped that baby free, right in the examining room…indicated less than a one percent chance of cancer….
What a relief.
The fibroid will be biopsied…but if all is clear, the specialist maintains we can wait and see.
What a relief!
December 20, 2006 at 4:24 pm
Hey Sunny,
Wow! Now that’s a specialist.
I’m really happy to hear things went so well. That is a relief! Best wishes.
December 23, 2006 at 12:39 pm
I have 6 fibroids totaling 12 cm. I will not have a hyterectomy at 44 y/o. Had two miscarriages. Found this on the internet. Ultrasound treatment for fibroids. read on and hope this helps someone. I will be doing this next year sometime.
[Edited by EclecticGeek to move the remainder of the MRgFUS comment to these two threads:
New treatment uses sound waves to shrink uterine fibroid tumors
Does anyone have an experience with ExAblate (MRgFUS)?
Thanks christine!]
December 23, 2006 at 5:49 pm
Hi christine,
I know editing your comment is a strange way to welcome you to the site but you have some useful information. There are two posts here about MRgFUS and your full comment is a great addition to both. I did edit the contact info to just include an email address and added a link to their website if someone needs more details. For those reading this, go check the threads listed in the comment above.
Thanks again and feel free to come back and update us as you learn more!
December 31, 2006 at 7:22 am
I had a scan five years ago after experiencing stitch like pulling sensation on my left side. The scan found 2 fibroids. when this was announced to me it was in sombre tones. However, I realised pretty soon that an enormous number of women have them without ever knowing it as well. The pain went and I have only had a hint of it about twice since.
I have sought homeopathic treatment since which I feel has probably helped. My gp had said end goal: hysterectomy which at my then age of 37 was offensive to me. I was told that the position of them would make surgery a dim possibility. I am also against invasive procedures for what, after all, seems to be a common occurance for many many women and which makes me think ‘does it need to be medicalised?’
I do have an enormous abdomen which causes me a lot of anguish as I am very into my appearance. I have found that not eating any wheat products and eating very samll portions both banishes the stomach-although i have a very forward tilting womb anyway-family trait- and the PMS symptoms often leading to murderous feelings.
I know that if I do the right sort of eating and take helpful supplements such as GLA containing starflower or primrose oil there is improvement. It does make me feel i can’t lead a normal food additive packed life like everyone else but I question why more people don’t try harder to find healthy food. I guess it’d becuase, like me they are busy women…….
My belief is that homeopathy has slowed, arrested, contained? the progression of the fibroids to some degree. My periods are pretty regular. they are however very heavy on day 2/3 and this increases if i get at all stressed or anxious. then wains and is bearable thereafter unitl the end. My periods ahve always been 7 days since I was thirteen. I am really loathe to go medical with this as I feel the medical info I have been given is so radical and after all my GP is male and does not have to endure this or any related problem! Does anyone out there have any like symptoms or successful outcoems for any probs as i have described????
December 31, 2006 at 2:13 pm
hello all , how should i begin , ok here i go well in may of 2006 i began to feel lo back pains and painfil periods . so i jst let it go until in aug of 2006 i went to my gyn. to see what was going on . he told me i had a 12 wk enlarged uterus . and the cause might be from fibroid tumors . well we was gonna wait and see me 6 months later to see if my uterus grew any larger and if it did he was gonna do a hysterectomy . anyways in oct of 2006 i had to go to the e.r because of the pain i was in i could barely walk stand, sit , ect. my lower back abd. pelvic area and legs were hurting so bad . i finally found out that i have a 7cmx6cmx6cm tumor in my endometrial wall . it is now dec.31st and i still have the constant lower back pain but it sometimes feels like my kidneys are gonna exploid . they hurt and burn at times , my pelvic regoin burns , my belly looks like im 3-4 months preg. but around my period time i look like im about 6 months. i also get pains in my left cheek almost like a sinus infection feeeling i still get the pains down my legs , now this all comes and goes when it wants to so its not a constant thing but my back is . so i dont know when my pain is gonna hit me. and at times i feel ike i just got hit by a truck. my weight has also went up quite a bit before all this i was 148lbs now im at 160 lbs i cant exersise anymore cause it hurts to much . in my legs and lower belly area. i feel like a fat cow now . i am scheduled for surg. jan 16th 2007 to get rid of all this mess . i just cant wait . i want to be pain free, and energentic again . i was on diets before and i was losing , but now im just packing the pounds on . i use to weigh almost 170 lbs 6 yrs ago i went down to 133lbs i was thrilled that i was finally losing weight anyways i would go up to 138lbs but back down to 135 and sorta avareaged around there until all this starting happening . anyways i was wondering if my weight gain is because of this tumor ? and why im gaining so much in so little time . i thought u gain an avarage 1 lb a yr . ive gained 15lbs total since knowning i had these things . is that normal ? im just sooo frusterated . but i know ill soon be better again . well to you all who has these tumors i wish u the best of luck .
December 31, 2006 at 2:18 pm
P.S. ( so sry i forgot to mention this too ) i have a discharge too its a yellow snot looking one but i get it after my periods and up until about a week before i get it . is this also normal for having a fibroid tumor ?
January 1, 2007 at 5:04 pm
katie:
There’s a post here on treatment options:
Just what are your uterine fibroid tumor treatment options?
You have choices. Please remember ALL treatments have risks and benefits. For me, I could no longer deal with feeling physically rotten all the time from my symptoms. Getting treated was one of the best decisions I have ever made. Yes, it was a process. From Feb. 2006 – July 2006, I had 3 months of Lupron, a Hysteroscopic Myomectomy, and a UFE. I would gladly do it all over again. I did not realize how sick I was until I got better.
I also had 7 day periods. They got progressively worse (more blood, larger clots) and my anemia was so bad that I didn’t even realize it was anemia. I thought I was dying this time last year. Things are so much better now. My periods are now just over three days and not heavy. I no longer have to munch on pain medication like candy. I can sleep through the night. I can stand up and not feel faint. I can go out in public and not worry about spontaneously hemorrhaging on everything. Life is good.
Seeking treatment will come down to deciding what is tolerable to you. Yes, fibroids are common. No, they don’t always have to be treated medically but sometimes they really, really do.
As far as doctors and gender, I would think on the other side of that unsympathetic coin would be female doctors expecting you to “suck it up” because “we’ve all been there”. Both of my fibroid doctors are male and I wouldn’t exchange them for the world. Both listen to me. They probably think I’m a geeky oddball but they listen and work with me.
Keep posting if you have more questions.
lilnikki:
Sorry your symptoms have been so bad. I plan on talking more about weight gain in the future but I did manage to post this recently:
This scale can’t possibly be correct (…or the actual weight of my dang fibroids + the rest of my body)
A case can be argued that the fibroids cause changes in estrogen levels leading to weight gain. I do believe this occurs. I often wish I could claim it for myself but my fibroids weren’t all that big. Yes, I also had a protruding abdomen but I could not blame my fibroids directly for the other big areas on my body (like boobs, booty, thighs, etc.).
Now indirectly, that’s another story. I’m an emotional eater and would eat almost constantly because I felt rotten physically. Couple that with me being so tired from the anemia that I could barely stand, let alone exercise. I ended up gaining a tremendous amount of weight. I was about 190 this time last year. I’m 150 now and still going down. Happy that it’s coming off slowly and steadily. Yay!
Discharge? Yes, I had that. Mine was thinner and clearer. It would get thicker near the time of my period. I hated it. I know it is normal for a woman to have some discharge during the month but this was beyond that. This is also much better post-treatment.
Check out that treatment post I mentioned above to katie if you have any questions about your surgery. It has links to the other posts here where women are discussing recoveries. You can also visit the Forum.
Best wishes with your upcoming surgery!
January 5, 2007 at 7:50 pm
hey there, I’m a database programmer here, abother computer geek! I just found out three days ago that I have an extremly large mass in my uterous, that the doctor believes is a fibroid. I’ll tell you, I nearly had heart failure hearing the terms, mass and tumor in the same sentence….. Anyway thank goodness for the internet, and web sites like this one! I hadn’t been to the GYN for over three years (I know, that’s a major screw-up on my part!).
Anyway, I’m 41-years-old, and I’ve always had bad periods, but over the past few years they have been horrific. The second day of my period, I basically can’t leave the house, because of the clots. I have to change a pad every 15 minutes. I honestly thought that it was perimenopause, but realized I needed to get myself into the GYN’s office.
What really sucks is that alot of my symptoms fell under a different diagnosis, and I now believe that both of my issues were causing symptoms. Three months ago, I was diagnosed with Ciliac Disease. It’s an allergy to glutin (wheat). I’m severly amemic, had cronic diareah, and my stomach was swollen out, that I looked six months pregnant, along with sever cramps in my lower abdomen. Well now that I’m wheat free, I have normal bowel movements, I’ve lost twenty-five pounds, and only look like I’m three months pregnant. Still havingt cramps, and periods from hell.
My doctor is sending me for an ultrasound next week, because he said I have to be having bad periods, just by the size of my uterus, he’s also concerned that my right ovary is involved, because that is swollen also. All that from a physical exam that had me jumping off of the table.
We can’t get the anermia under control, and I’m like a washed out dish rag at the end of days, but i’m actually begining to feel like there may be light at the end of the tunnel for me, although my weight loss is really starting to freak me out, because I’m losing two pounds a week, and I’m eating more calories these days than before, I was diagnosed with Ciliac. I’ve gone from a size eight, pushing ten, to a two, which doesn’t really look that good……. I actually bought hip-hugger jeans, because they hid my pouch in the stomach. I STRONLY recommend them for any woman!
I’m going to try the mollases, and after my ultrasound I’ll be back to report what the doctor says, regarding the next steps.
Everyone’s input and experiences here are great! I’ll tell you, it’s really helping me to control my neurosis from this.
January 6, 2007 at 6:27 pm
Hi Sophia,
Yay, another geek. Glad you found us and that we’re helping!
Yeah, I waited a long time before going, too! That’s okay. You’re seeking treatment now.
Anemia was one of my problems. I’ll leave a link to that post for those reading along. I’m thinking you saw it already because you know about molasses. If not, stop by here:
Uterine fibroid tumors and anemia?
I’ll also leave a link to the Forum. You can wander around there and find other interesting posts.
Not sure about the weight loss. I gained a lot of weight. Mostly from stuffing my face because I was sad over my symptoms and then being too anemic to move, let alone exercise. Talk to your doctor about it. Once you start doing things to improve your health, your health improves. I’m not saying that to be goofy (although I have been known to be goofy at times). I’m a living, breathing example. I felt so bad this time last year, I thought I was dying. I feel great today. Still have some weight to lose (40 pounds down and about 15 to go) but I feel much healthier and more positive.
Thanks for the tip on jeans. Since my hips are smaller, perhaps they now have the ability to be hugged.
Looking forward to your updates. Best wishes with everything and remember you’re not alone!
January 13, 2007 at 6:35 pm
Well, I had my ultrasound and meeting with my doctor yesterday. I’m full of the darn things! The ultrasound technician said that in addition to the five that she measured and pictured, that there are over 20 smaller ones just starting out. Four of the fibriods measure 6×6 cm, and the fifth is 5×5 cm. To add insult to injury the darn things are poking out everywhere and the commented on the severly distorted shape of my uterous. My uterous is basically full of the things. I had a transvaginal ultrasound, and I can’t believe how much that hurt. I had serious cramping for the rest of the day, and I had to wear a pad, leaving, because the procedure initiated bleeding.
I’m going to be having a hysterectomy. My doctor and I discussed what my limited options were, my symptoms, and the probability of them just becoming worse over time, because of the sheer size and quantity of fibroids. I do not desire any more children, and at 41-years-old, I just want my quality of life back, along with a life without anemia.
I’ll be having an abdominal hysterectomy, becuase the size of my uterous will not allow a vaginal one. He is also going to remove my cervix, because of my history of bad pap smears, and I’ve had leep surgery and a history of dysplasia. I’ll be retaining my ovaries, my doctor feels that I have another 10+ years worth of use for them, and he does not want to throw me into menapause, if he does not have to.
I’m going to be having the surgery around the end of the month, or the first week in February. Timing wise it will work out the best for me to have it sooner than later, and there will be minimal impact to my work activities. I’m very lucky to have some great friends, on will shovel snow for me, the other will stay with me, and my daughter is planning on being here for the first couple of weeks, and just commute to college.
What I can’t believe is my families negative responses. My sister had a hysterectomy six weeks ago, and she proceeded to tell me that I will not feel like a woman any longer. I told her than a few internal reproductive female organs do not define who I am as a woman, and that I’m actually looking forward to not having such an awareness and tendancy to curse the darn things out. My mother went on about how I’m going to be sprouting facial hair and basically become a man. Talk about ignorance. Thank goodness for a great doctor and significant internet research related to this topic.
I’m really psyched that there will be light at the tunnel, and thrilled that I may never have a period from hell again, that alone makes my surgery worth it. The thought of never fearing a bad pap result again, is incredible. I told them that they needed to chill out, and that it’s not like they will be closing my vagina up, and adding a penis, I will still be very much a woman, and what a thought, pain free sex, yee ha!
January 15, 2007 at 6:26 am
i have fibroids and i would like to know what i can do to eliminate my bloating and how i can loose the fat on my belly…..i pretty much fit my clothes but my belly is just too big ..i look like i’m about 3-5 months pregnant not a nice site……
January 18, 2007 at 6:13 pm
Sophia:
Thanks for sharing your decision with us. Yeah, there are some women who are totally against it. I just can’t jump on that bandwagon. It’s a valid surgical procedure and for some women hysterectomy is the best option. I’m not a doctor so I would never take a treatment option off the table for any woman. ALL options have risks and benefits. Heck, doing nothing will have risks.
I have a couple of posts for you to visit if you like:
Does anyone have a hysterectomy experience to share?
Interesting comment that talked about complications but I had to put my foot down when this visitor attempted to spread fear. Way too many sites online doing that.
How are you feeling after your Abdominal Hysterectomy?
Includes a very detailed comment from someone (teep) one year post-op and doing well.
You seem comfortable with your doctor and your decision. I cannot even begin to tell you how much that helped me during my treatments. I learned as much as I could and then truly embraced my choices. I was ready for anything that occurred along the way.
That reminds me of a post where a visitor (Bonnie) continues to leave great comments. She’s been having a complication post-op but her updates are informational and upbeat:
How are you feeling after your Laparoscopic Hysterectomy?
Best wishes with your upcoming surgery and keep in touch!
bleddy:
I promise to start posting more on fibroids and weight. I have one post here:
This scale can’t possibly be correct
Since my fibroids weren’t nearly as large as some I’ve seen listed on this site, I discovered a lot of my big belly was fat. I don’t know how women with large fibroids are dealing with the enlarged bellies but I’m sure after I start my posts on weight, MANY women will chime in.
January 20, 2007 at 3:43 am
Thanks for posting this. I go in next week for a obgyn appt to discuss my fibroid. I have had no information about the increasing pelvic pressure and pain and was scaring myself into imagining cancer or some horrid back disc thing. An ultrasound showed one fibroid towards my back last spring. No one said the things could get worse. Your article was like reading my own medical description. Thanks again, now I can breathe a little easier until the appointment. Sorry I sound like such a twerp.
Bless you,
Elana
January 29, 2007 at 9:56 pm
Hi Elana,
Glad the information helped! I also didn’t associate the wide variety of symptoms with fibroids (especially the anemia). I can relate about scaring yourself. I had no clue what was wrong with me so I imagined a bunch of things.
No twerps here… Just geeks.
Best wishes with everything and keep us updated!
February 13, 2007 at 8:30 pm
Hey,
I was doing some research on what not to eat when you have fibroids and I cam across your blog. My period has been knocking the heck out of me since it started when I was 13. I have a fibroid and though it is not ver y very large, it causes me a great deal of pain. I was just in the hospital 3 weeks ago because i kept passing clots and Iwas bleeding longer than normal. As for pain, I think my body is immune to Hydrocodone and Mortrin…and I’ve been son several different types of hormones…so I just dont know any more. Eventually.. I want to have surgery and have it gone once and for all.
February 16, 2007 at 10:20 pm
Hi AT,
My fibroids also weren’t very large. I can relate to what you are saying. The clots and blood and pain were all such a huge part of my life.
I have posts in the Forum that you should find helpful. Here are a few:
How are you managing your heavy menstrual bleeding?
I suffered from anemia due to my heavy bleeding so I’ll include:
Uterine fibroid tumors and anemia?
I have a post on treatment options. If you visit it, you will find links to the other posts where women are discussing post-op recoveries:
Just what are your uterine fibroid tumor treatment options?
My treatments lasted from February 2006 to July 2006 (3 months of Lupron, a Hysteroscopic Myomectomy, and a UFE). You can read about it on the About page. I feel like a new person now.
Please keep posting if you have any other concerns. You are not alone. Whatever you decide, you’ll find support here. Best wishes!
February 22, 2007 at 1:57 pm
hi, I’m so glad I found this website! I’m 41 and way done with having kids. I’ve always had problems, and have put up with this for years! I have been in so much pain lately, and have other symptoms as well, finally my Dr took notice. The Ultrasound confirmed “enlarged uterus filled with fibroids” Of all sizes. I could have told them that! next step for me is a hysterectomy. I told my Dr. I wanted to lose weight first ( about 80lbs overweight) to help with the recovery etc. I have enter5ed into a strict regimen with my Dr. and so far so good. I’m looking at surgery in August. Does anybody know of any kind of treatment to help get me through until I can have the surgery. This is so uncomfortable. I’m constantly bloated and swollen, constipated, sex is well right not non existant, even if it didnt hurt, I look and feel like a giant water balloon. Has anybody had their cycle ” shut down” until they could get surgery?
February 23, 2007 at 7:40 am
angelamoss, welcome and thanks for your story. If I can make one suggestion re: constipation is to eat foods high in fiber. Aim for a total of 25 to 35 grams of fiber a day. But do it slowly otherwise you may have the reverse effect happen to you! Berries, especially bueberries (fresh or frozen), barley, lentils, cereals, figs, peas and corn are all great sources. I also use psyllium, a grain in powder form, mixed with water on those days I need alittle extra help. For me, keeping my innards working made a huge difference in reducing the other symptoms. Hope this helps and the best of luck with your weight loss!
February 27, 2007 at 9:34 am
Hi everyone!
I just found out that i have a bunch of fibroids. The dr. told me that one of them is 8.5 cm & will need to come out. I had gone to a different dr last year (insurance changed) and was told then that i have fibroids. My new dr got the report from last year & said that within a year it’s grown to 8.5 cm. I have to go back in 3 months for pelvic & vaginal ultrasounds to see the rate of growth, then he said…it’ll need to come out. Can anyone tell me what and 8.5cm fibroid size would be in relation to some object? i’m clueless. I didn’t really have a chance to fully discuss everything with my dr yet. I don’t even know which surgery he wants to do, i’m think hysterectomy because of my age, but i don’t know. I’m so glad I found this site. He asked me how I was feeling, i have bloating, my periods are very heavy, some soreness in my lower back (is that typical?). I’m trying to do all the research I can so I’ll be well informed before I see him again. Any advice, words of wisdom are appreciated.
February 27, 2007 at 11:20 am
Hi Robin,
I can certaily understand your concern and the need to get as much information as possible. 8.5 cm is almost 3.5 inches. That’s the length of an average american business card or about the size of a lemon. The symptoms you described are similar to what I was experieincing. For starters, take a look at “Uterine fibroid symptoms (not my idea of fun)” as well as ["Just what are your uterine fibroid tumor treatment options?"]. If you want specific information, click on ‘Archive’ from the header and scroll down the list of topics. You will find lots of information there that will help you prepare for your dr. visit in 3 months. The best to you!
[Edited by EclecticGeek to add link.]
February 27, 2007 at 11:25 am
Oops, Robin, I just realized this is the Uterine fibroid symprom forum. These are the posts you’d want to go through. Take good care!
February 28, 2007 at 6:35 pm
Hey Angelamoss
I have a large fibroid on the back of the uterus and the MRI shows its pressing on the bowel which sometimes lead to wonderful constipation. I found that as Tina mention a diet with high fiber is good and what I find –and I know this may sound dopey and look even sillier when you are doing it. But it works wonderfully for me. I get on all fours (like the cat yoga pose, first picture http://www.abc-of-yoga.com/yogapractice/cat.asp) and several deep relaxing breathes and **ahem** then it is smooth sailing in the bathroom. I chalk it to gravity pulling the fibroids taking it off the bowels for awhile so things can move along. I suggest doing it a bit before your normal pooping schedule. Unfortunately Gravity does nothing for the other horrible symptoms.
hope that helps
March 4, 2007 at 3:39 pm
Hello All,
I am 32 years old and recently was told i havelots of fibroids. After having an ultrasound done my gyn told me that i have several fibroids the largest being 16cm or a little bigger than an orange i beleive. Oddly enough i have not experienced heavy bleeding and bad menstrual cramps. I have however recently dropped weight back in January. About 12lbs to be exact. I do have a large stomach as if i am pregnant…feels weird. I also recently developed allergy issues. Food allergies…dairy. I am now on Zyrtec D…never suffered ever until recently. Some months ago i did urinate very frequently mostly during the night and i would get really warm until i went. Lately that has gone away. I think the biggest scare was the weight loss. But it has adjusted and i still remain at that bottom number. The gyn told me that he could do either a hysterectomy or a myomectomy. he suggested a myomectomy due to the fact that i dont have kids. But he did state that if there was lots of bleeding he would have to take my uterus. I think i only saw one or two posts where others lost weight and one other person suffered from sudden allergy issues.
I am due to have my surgery April 10th. So i am counting down. A little nervous about the pain afterwords. At least i will have a 4-6 week vacation from work.
Wanted to say this is an excellent site. I feel better knowing others are going through some of the same symptoms as myself.
March 4, 2007 at 5:22 pm
Tina and El:
Thanks for your help here!
Shannon:
Glad you found us and the site helps! I’m sorry you are going through so much but happy that you have a treatment plan. I have a couple pages here where women are discussing their post-op myomectomy recovery experiences. You can post any questions or concerns you have. Not sure which procedure you are having so I’ll list both:
How are you feeling are your Abdominal Myomectomy? (part 3)
How are you feeling after your Laparoscopic Myomectomy?
Other interesting topics of discussion are listed on the Forum page.
Best wishes!
March 5, 2007 at 7:25 pm
Hi There,
I am doing research from Thunderbird, School of Global Management, on fibroids and particularly treatments available for abnormal uterine bleeding or menorrhagia. I am actually researching what is available in a number of different countries- Spain, Japan, Mexico, UK, and Germany. Might anyone have any information, contacts I could speak with, or websites that I could go to to find out more information on the treatments that are available in these countries for AUB?
I would appreciate any help you could provide!
Thank you,
Berkley
March 12, 2007 at 6:54 pm
I just found out after a trip to the ER that I have a uterine fibroid. My question is has any of you experience terrible headaches and neck pain with it? Please let
March 13, 2007 at 10:44 am
Hi Debbie,
I did not personally have neck pain or headaches with the fibroids but I did have terrible lower back pain on my right side (due to one of the fibroids pressing on my spine). The headaches and neck pain can come from a lot of things…If your fibroid is bothering you…check with your doctor. Sometimes an imbalance in hormones (I am not a doctor mind you) can cuase headaches…like the estroen shift during your period…lots of women including myself gets headaches….
ladies the other thing to help with constipation (especially if a fibroid is pressing on the bowels – uhh been there) besides fiber is water..Remember to drink adequate amoutns of water to keep the bowel soft. That combined with the fibrer will help.
HI AT – I tell you my smallest fibroid caused the most problems. Its not always the size its also the location as well. There is a lot of infomraton about all kinds of treatment options..so you have come to the best place on the web to find out about fibroids!
March 20, 2007 at 4:05 am
Well, I had my hysterectomy on January 22, 2007. I have left several posts in other threads. The hysterectomy was the best decision for me, and I have an incredible quality of life back with those darn things gone. One ended up being the size of a grapefruit.
The most amazing things for me, post-surgical are the absence of back aches, getting up in the middle of the night to pee, and I have not had a migraine in two months. My buda belly is GONE. My uterus ended-up measuring 24 weeks when it was removed. The pathology report also found that I had adenmyosis, so hysterectomy was great .
It is also incredible to be able to go to an hour long meeting at work, and not to have to worry about an accident….
March 27, 2007 at 8:40 pm
Just wondering—I have 1 large fibroid and many small ones. A hysterectomy was suggested about 15months ago. My uterus is a 6 month pregnancy size. I am having all kinds of weird symptoms: huge belly, constipation, abdominal pain and back pain. I have recently started having pain in my back at about mid-rib region; my ribs are also sore on the sides. Could these tumors be pressing on my ribs? I know that they are pressing on my bladder because I am up all night and can’t ever make it to the bathroom without leaking. Any ideas about the rib pain?
March 28, 2007 at 1:48 pm
Rita, I am so glad you brought the rib cage issue up. I keep thinking it is my imagination. I have a lot of small fibroids mixed with some medium sized one. During my recent exam, doc told me that my uterus is shifted to the right secondary to my biggest mass that sitting on the top of the uterus. I was wondering myself if the pain or soreness I feel on the ribs is caused by the fibroids,especially when I sleep on my side. Has anyone else experienced this?
Kelly–Thanks for the advice on the drugs and constipation. I am also very concerned about the drugs and stomach bleeding. Was that ever an issue for you, and did you docs have any concerns about that? My doc prescribed 800 mg of Motrin, I try to take that sparingly right now. I had to stop exercising last year because certain exercises would cause pain and cramping. Do you think I should start some kind of light exercise regimen to strengthen my back and arms (since they will be the compensating muscles for my abs)?
March 28, 2007 at 7:42 pm
Raquella, thank you for your response~! I have been worried sick that something horrible was wrong with me; it’s nice to know that someone else has experienced this and I’m not completely nuts! I think these things can cause all kinds of misery and have just about decided to go ahead with the hysterectomy. I have been hesitating because I’m afraid of surgery and the potential changes to my body. Anyone have any good words about hysterectomy to relieve my fears????
March 28, 2007 at 10:44 pm
hi ladies,
i am really glad to have found this site…much more information and support than the usual same recycled facts. i have huge concerns that i want to share with you in the hopes that your experiences will help alleviate them, so here goes…i was diagnosed with multiple fibroids, one being the size of a grapefruit (laughed at the fruit basket analogy someone left) about 6 weeks ago during my annual. surprisingly, i don’t have the heavy irregular bleeding that most of you experienced, but the back and pelvic pain are at times enough to take my breath away (times like right now, actually.) i am waiting to switch from a health savings account to full insurance coverage during open enrollment in may (if i can make it that long anyhow) before i get the treatment ball rolling. anyhow, this has been a nightmare for me, i would say it’s equally split between physical pain and emotional concerns as i am 33 and haven’t started a family yet (i cry alot over this.) this week, my stomach has bloated out a GREAT deal. i think it’s constipation (as if there’s room in there for anything more.) i took a laxative this morning (successfully) and am starting a fiber supplement to keep from a recurrance of this agony. basically, i would like to know if any of you have had sudden bloating and pain that wasn’t constipation (inflammation, etc.) and either way, when can i look forward to having my belly shrink back to where it was a week ago (started my period on mar 16th so it’s not pms.) belly is by no means iron board flat, but i am so uncomfortable and in pain that i haven’t gotten more that 5 hours of sleep for the last week which is not helping with the emotional strain. i can actually see and feel them protruding and pulsating out of my skin due to the bloating. also, once i make the “official” appointment to begin treatment, how long will it be until surgery? i assume that i will make several appointments between doctors for consultations, ultrasounds, etc., right? also, my doc (who is great and “off the record” told me to get the full coverage and then come right back) said they will try meds first. is this the lupron that i read about? not sure about teasing my body with an early menopause thing as i tend to be the one in 100 (“side effects may include”…that’s me.) anyway, any words would be greatly appreciated, as no one i know has really experienced the thrill of fibroid pain and fertility terror simultaneously like alot of you ladies have. my mom asked, are you sure the back/pelvic pain and the constipation are related to them, HAHA (and she had them for crying out loud.) thanks in advance for your time.
March 29, 2007 at 9:33 am
I have been diagnosed with 3 uterine fibroids. Not sure of the size as I am waiting for my ob-gyn to contact me for consult. I do know that one of them is pressing up against something to cause me severe back pain. I feel as though I have gained a considerable amount of weight, putting bloating aside and my question is this; “how soon after treatment do you begin to see weight loss. Is the weight gain because of the weight of the fibroid or because your hormones have been running rampant?
March 30, 2007 at 11:58 pm
Hi all,
I posted about a month ago and I have several fibroids. 1 really large and a bunch of smaller ones. No heavy bleeding or bad cramping. Docs have ran all test and i will be undergoing a abdominal myomectomy April 10th..about 1.5 weeks. What i wanted to ask is is anyone suffering from sharp pains in their lower abdomen area. My cycle is not on but a few days ago i started to experience sharp pains when i move or turn or when getting up on my lower right abdomen but over to the side near appendix,etc. THe pains come and go and are so sharp I stop everything I’m doing. So looking forward to getting rid of these things…UUuuuugggg!!!
March 31, 2007 at 5:44 am
Well reading the six posts prior to this one prompts me to give my own personal opinion that I believe that your fibroids are probably causing a majority of symptoms.
My surgery took extra long because of how distorted my uterus had become because of my fruit basket of fibroids. My surgeon told me that I had one of the most distorted uterus’ that he had ever seen in 20+ years of performing surgery. It literally had grown so distorted that it had invaded any area that it wanted. I had my uterus pressing against nerves in my back, wrapped around my ovaries, pushed my intestines up towards my chest cavity, and we will not even talk about what it had pressing against my bladder.
I attributed many of my problems to the aging process, and I’m only 41-years-old. Mt weight went down about ten pounds in the week after surgery, and the reduction in the size of my abdomen was amazing. I am a petite woman, 5′2″ and weighing around 110 pounds, so it was pretty significant the amount of room that 24-week uterus took up.
One thing that really stands out to me comes from my six-week post-operative appointment with my surgeon/GYN. He asked me if I had it to do again, would I have had the surgery. I did not even hesitate, when I responded yes. I told him that my quality of life has so drastically improved, with the removal of aches and complaints that I never knew were from my malfunctioning uterus. Most significant was that I sleep through a night now because I do not have to get up to go to the bathroom AND I do not wake up with paralyzing pain from my back literally locking up in spasms. I don’t have painful bowel movements any more. I also do not feel the constant pressure that I used to feel in my chest cavity a few hours after a meal, because there is now room for my meal to process through my body normally.
My only negative, and it is minor is that my ovaries, ten weeks after surgery have not woken up like they were before. I have had hormone level tests, and they are functioning, just not like pre-surgery. Now that I do not get periods, I’m pretty clueless related to where I am in my cycle, and I have extremely bad PMS, so I find that I can tend to go into PMS mode and not be aware that it’s my hormones out of whack, while I was able to count the days from my period prior to the surgery. To overcome that I just need to adjust, and really try to be aware of what’s going on with my hormones and where I would be in the world of a goofed up cycle. Since that’s my only negative, then I consider myself truly blessed!
I believe that everyone should pursue treatment, the one that is best for you, and where you are in your life and reproductive goals. For me at 41, my abdominal hysterectomy was the correct route to go.
Best of luck!
March 31, 2007 at 12:35 pm
Sophia,
So glad that you are feeling better! I have an pre-op appointment with my Dr. on April 9 to decide which approach we will use for the hysterectomy. At 52, I am no longer having periods and and in menopause so ovarian functure is almost nil. My surgeon is suggesting supracervical laparascopic surgery—your surgeon chose abdominal—do you know why he made that decision? I am leaning toward choosing that instead of less invasion techniques (even though the recovery is shorter) simply because it seems like they can see more.
I understand about the goofed up hormones—I have been in menopause for a while now without using HRT and it is not fun. Here’s to awakening of your ovaries!!
April 2, 2007 at 10:15 pm
I wish I had chanced upon this site earlier then I would have avoided 4 months of running from one gyno to another and getting treated for infections i never had. For some reason inspite of me constantly telling all the 4 gynos that i felt a would on the left side of my vagina they did not want to get an ultrasound. I kept insisting on it and then finally a dermatologist sent me to one and i found tiny uterine fibroids. I now don’t have a qualified gyno to go to. I am looking for some one in Manhattan who knows how to treat fibroids conventionally without immediately thinking of surgery. The problem is I feel the pressure on my bowel so I know they is a posterior fibroid that the ultrasound didn’t detect. I could not tolerate the pain from they did the tranvaginal probe so I want to get an MRI scan. Can some tell me how to go about getting an MRI scan specific to the fibroid that is causing pressure and pain to my rectal area.
Also if there any good doctors that you can recommend that would be great.
thanks in advance
April 3, 2007 at 4:19 am
i am so encouraged by what i have just read regarding fibroid i have very large fibroids but was afraid to remove them because most of the docs i have seen suggest i remove my uterus. i dol not agree with this at all. i am just hoping to find someone who can help me.
April 13, 2007 at 1:52 am
I’m so glad I found this site. I was just diagnosed with very large uterine fibroids during my annual exam. I never knew! I just knew my pms symptoms were getting worse and my bleeding during my period was getting a little worse. Nothing really sent up a red flag that something was that wrong! Anyway, now I’m getting a consultation about surgery in a few days. I’m nervous because I don’t have insurance (I’m going through a clinic) and because I don’t know what they’ll recommend. According to my doctor, my fibroids are the equivelent of a full-term pregnancy (I personally don’t think I look pregnant, as I still fit into my size 8 jeans).
Anyway, it’s a relief to see other women have fibroids that are large as well (I was really starting to feel like a complete freak). My big question right now (and I’d love opinions on it) is what kind of surgery they’ll recommend: myomectomy or hysterectomy. I’m 31 and haven’t had any kids.
April 13, 2007 at 12:57 pm
Hi,
This site is awesome… Only this month have I begun to experience anything strange. I’ve been bleeding for the last 15 days with huge blood clots, even while on the pill. My doctor has ordered an ultrasound, and the word fibroids has been tossed out by a friend. I must admit that I am terribly afraid, at 32 I would like to another child. I would like to know what the earliest symptons you’ve had before you were officially diagnosed???
April 15, 2007 at 12:49 pm
I found out last summer that i have a big fibroid because i went to my gp when my periods got so bad i couldnt get out the house.Got injection and mirena coil in to stop the bleedings and it helped. But it didnt stop the fibroid growing as they told me it maybe would.I was in cuba in January and after 2 weeks i got huge..had a doctor to see me there and yes it was my fibroid. Back in Ireland i went to see my doctor to arrange an mri scan..massive fibroid..so now i’m waiting until the 25th may to have an embulaziation done and hope it works. But..i have one question..the last few month i seem to grow big for few weeks..then shrink..a little not soo much..i can feel my fibroid getting huge maybe 10 days before my period..if it is my period..because i seem to bleed on and off anyways..not heavy..i have period pains most times..but not as bad as before…so what is this growing and then getting a little smaller again??I look like 6 month pregnant now and its still growing..i’m 47 years old and had heart-attack and 4 bypasses 5 years ago so i dont realy want hysterectomy if i dont need one..
April 16, 2007 at 6:13 am
Hi! I left some comments here yesterday and they seem to have disappeared into the ether…am I just doing something wrong…my computer skills never were up to much…just want to join in the fun!
April 18, 2007 at 9:55 am
I had my first fibroid diagnosis last year and I took the “watch and wait” route. Things have gotten bigger, and the doc wants me to have a hysterectomy. My uterus, she said, is up behind my navel because it is “full of fibroids”. It’s something like 19cm and is protruding through the abdominal wall.
I’m balking at the big “H” after reading so many nightmare stories about the process. I am not experiencing any symptoms (outside of looking pregnant), so I don’t feel a pressing need at this time to go down the surgery path but I will probably consult with a gyn to see what my treatment options are.
April 18, 2007 at 4:29 pm
Maria,
I was also diagnosed with one large subserosal fibroid (15cm in largest dimension) last June and took the “watch and wait” approach. I followed up in January this year with another ultrasound which confirmed that it had grown to 21cm. My symptoms are the big belly and visiting the rest room every hour since fibroid is pressing on my bladder. I have seen 3 gyno’s who said myomectomy is possible on a large uterus but all have leaned towards a hysterectomy as the “ultimate solution” to get of fibroids permanently. I am 42, no kids, and I still want to keep my uterus. I have an appt on Apr 24 with a fibroid specialist in NYC (Dr. Ascher-Walsh, who I read about on this board) so I am anxious to hear what he has to say.
April 20, 2007 at 12:29 am
Hi.
My sister-in-law has been diagnised yest. by two fibroid glands (one-8cm & another one is 3cm). There are in the surface of ovaries. But she is in the family way. She has just completed 42 days. Is it curable?. Is it affect the child or not? Please send the reply as soon as possible. Thanking you.
April 25, 2007 at 11:54 pm
I have been in the wait and see mode with my fibroids for the past 2 years. The symptoms are all of those posted above. The ones that bother me most are the lower back pain, breakthrough bleeding and huge clots. The YAZ has made my bleeding reduce greatly and eliminated the hot flashes and mood swings.
My doctor isn’t pushing the hyterectomy (I’m 47 (married 30 years) and done with children) but she asked me if I have had enough! The fibroid in the top of my uterus has gone from 12 to over 20 cm since November. It’s almost to my bellybutton. I have decided to go for the hysterectomy because I just think my quality of life is just getting in the way of my life (and my sexlife).
Here is my question. I can’t get away from work and life before July. That’s 12 weeks away. Has anyone heard of any major changes happening so fast that would create an emergency situation? I travel a lot. My doctor says the whole thing is up to me and my comfort level so I didn’t get a feeling of worry from her. I forgot to ask her if waiting is a risk and I am getting anxious about waiting for an answer at my next appt. BTW, my anxiety came on during my last period when my discomfort and distended belly got extreme for a week. My surgery ischeduled for July 11th.
Did I ask a coherent question there? Oh yeah, do fibroids ever go crazy fast?
Paula
April 29, 2007 at 4:51 pm
Ladies,
Just wanted everyone to know that I am on the 5th post-operative day since my laparoscopic supracervical hysterectomy for fibroids (my uterus was the size of a 5 month pregnancy!) The first thing I heard when I woke up was the anesthesiologist saying, “Man, that thing was big—it needed to come out of there! My bladder has already stopped leaking and I can go sleep almost all night without getting up. I was only sleeping 1 to 2 hours at a time! My back pain is gone!!! I am SURE that those things were causing me to feel horrible! I just wish that I hadn’t waited so long! Just wanted to encourage anyone who might be waivering on what to do.
Thanks for listening. . . .
May 9, 2007 at 3:43 pm
I have had 3 c-sections and a hysterectomy last august. I need to have my ovaries removed now and my doc wants to try laprascopic surgery instead of cutting me open. I was told after my last procedure that I had a ton of scar tissue. I thought laprascopic surgeries weren’t possible after so many surgeries. Does anyone have any info for me on this?
May 9, 2007 at 7:47 pm
Maria and SPF, I think we are in the same boat. After a second ultrasound and a transvaginal ultrasound, I was informed that I had three large and several small fibroids in my uterus. Tha largest of these is 5 cm, 5 cm, and 7 cm. One is a pendunculated fibroid growing from the back of the top of the uterus (if that makes sense).
I went in today for a consulatation and was told that I have four options:
watch and wait (which I don’t want to do)
Lupron (I don’t want to mess with my hormones if possible)
myomectomy (what I assumed I would be having all along)
hysterectomy (vaginal hysterectomy leaving the ovaries in)
The docs seem to be leaning toward hysterectomy as well. I’m 31 and even though I don’t really want kids, I’ve grown kind of attached to the ol’ uterus. I have a family history of fibroids, however: my mother, my aunt, and probably my grandmother had fibroids. My mother and my aunt had hysterectomies to alleviate their fibroid symptoms. My grandmother had a hysterectomy too, but I don’t know if it had anything to do with fibroids.
Naturally, I’m afraid that if I have the myomectomy they’ll grow back in a couple of years and I’ll just have to have a hysterectomy anyway (it took about 18 months for these to grow as large as they have). And naturally, I’m afraid if I have the hysterectomy I will immediately want a bunch of kids! I think I’m going to get a second opinion and go over the treatment options again. I know that women with far larger fibroids than mine have had myomectomies without a problem, but my doctors seem to indicate that this would be problematic for me.
Other than my “5 months pregnant” look, I don’t really have symptoms (I’ve always had heavy periods), so I have time to research and decide. I was slightly anemic and am now taking iron supplements. I’m still going to the gym quite frequently (5 nights a week or so) and have been told that I don’t need to slow down if I don’t feel like it.
May 10, 2007 at 9:01 am
galleywest,
I was offered the same 4 options as you. The last Dr I saw reccommended 3 months of lupron in order to shrink the fibroids before surgery. However he was not sure if they would shrink enough to allow a laproscopic myo so I’d still have to have an ab-myo anyway. I decided against the lupron due to the possible side effects. I had one (male) Dr ask me “at your age what are you keeping your uterus for?” Good luck with your decison, I know it is very difficult.
May 10, 2007 at 5:56 pm
SPF,
I came to the same conclusion about Lupron. I’m worried enough about changes to my metabolism after either the myomectomy or the hysterectomy.
I have a consultation scheduled for Monday after next at the office a friend of our family went through, and I may get another from another clinic her daughter recommended. I’ll feel more informed after that. I also learned today that my aunt (mentioned above) had a few fibroids removed about a year before her hysterectomy and that they grew back (or smaller ones grew larger) later anyway.
I’ve got PMS something awful today and feel even more bloated than usual. Have I mentioned how much I miss my old body? The one with the hourglass figure? Not thin, but not this weird lumpy shape, either!
I would have told that doctor that you heard that replacement uteri (uteruses?) are just so hard to come by these days, so you’d like to hold on to yours.
May 11, 2007 at 8:31 pm
I love your stories. I too am a geek. PhD in computer science. I recently had a D&C after my early exam because of an enlarged uterus. Dr. wanted to make sure it was not cancer. I had my post-op to day and she told me my uterus is the size of a melon. She told me I did not have to rush, but a hystrectomy would be necessary. I questioned about fibroid shrinkage after menopause, and she told me it would not shrink enough for her to feel the overies, and that was really important post-menopause due to the increased risk of overian cancer. My uterus is too large to remove vaginally, so a bikini incision would be necessary. I have been looking at other options, like laser. I am very concerned about weight gain after a hystorectomy. I have no idea if these things are still growing or not. I am not having symptoms, other than my belly does look a little poochy. Seems like in the absence of pain, bleeding, and bowel trouble having surgery seems extreme, but she stressed the cancer risk if they can’t feel the overies. What do you all think??
May 13, 2007 at 3:32 pm
Glenda, not to doubt your doctor, but I would definitely get a second opinion. I’m getting a second and possibly a third to discuss options–the original options were kinda like yours: you can wait a while (watch and wait) or we can do a hysterectomy. It seems to me that if “watch and wait” is one of the options, that “take everything out!” shouldn’t be given the same weight in almost the same breath. It’s just a little odd.
Like you, I don’t have really noticeable symptoms either and have been told I can wait a while before doing something (although I want it done this summer and no later). They never said anything to me about ovarian cancer, although initially there were worried not about the size but the rate they grew. With my family history of fibroids, however, I don’t think they are particularly worried about cancer now. An oncologist was one of the people who reviewed my file and said I didn’t fit the profile of someone at risk for cancer. Maybe that’s something you should look into??
Also, I finally did what I should have done from the start the other day, which was get a copy of all my files to date. The only thing I don’t have are the ultrasound pictures (and I’m going to see about getting those). Makes it easier to discuss my case with other doctors.
Good luck, and don’t be afraid to get a second, third, or fourth opinion if you need it!!
May 13, 2007 at 3:35 pm
Forgot to add: I’m totally with you on being worried about weight gain after myomectomy or hysterectomy. I have worked too damn hard over the past 7 years getting myself to a size that is comfortable and normal to me (size 8, so you don’t think I’m anorexic or anything!!). It’s very important to me that I can stay active and still fit into my clothes!! I feel like it’s a petty thing to worry about on the one hand, but on the other, it’s a thing that is a big part of my life!
June 4, 2007 at 5:00 pm
Hi, I have been reading some of your posts and have been told i have a small fibroid that would likely just go away, it was found by a vaginal ultrasound. Is there a chance there are more fibroids that need to be found using another method such as an MRI? Also, I am trying to get pregnant and have been having a hard time, so perhaps I need to follow up. I saw an early post (about a year ago) by Nikki who says she also has dry flaky scalp, me as well, and food allergies…did anyone ever find a link to fibroids for those….I also have cystic breats. Would love some feed back.
Thanks, Alex b
July 7, 2007 at 3:25 pm
I recently had a transvaginal ultrasound and it showed a fibroid of about 6cm. They said it was pedunculated but couldn’t find the stalk/attachment to the uterus. I have symptoms such as right lower abdominal pain, bloating, a quickly-growing belly, but I have NOT had a period in two months. The doctors all initially assume I’m pregnant, but I know how babies are made, and pregnancy cannot be a possible diagnosis! I’ve found that it’s more comfortable to keep my body in-line, as opposed to sitting and creating a “bend” in my body. When I walk, the jarring makes my abdomen hurt. Does anyone else have these symptoms? I keep reading about people with more bleeding, but I don’t think I saw anyone with NO or LESS bleeding. Help! Also, have any of you heard of a parasitic leiomyoma? That seems to encompass some of these symptoms…
July 28, 2007 at 9:23 am
Hello. Wanted to hear from Sophia to see how she’s doing about 5 mos post surgery. You seem to have the most similar case to mine. Wanted to know if you still have any pain from your ovaries during ovulation or if you ever did. Do you still get bloated? Do your breasts get fuller or did they ever during your period and post surgery? I’m wondering if that still stays the same after surgery. I’ll probably have a hysterectomy in September. It was a year long process deciding whether to have a hysterectomy or myomectomy.
Last year, my fibroid measured 13 cm. It’s supposed to weigh about 2 to 3 lbs. Here’s a site referencing fibroid weight in grams. http://www.blackwell-synergy.com/doi/abs/10.1034/j.1600-0412.2002.811206.x?journalCode=aog. Read largest uterine fibroid removed was 100 lbs. I guess we all wonder how much weight these fibroids take up especially if we look pregnant. I look about 5 to 6 mos PG and I’ve been asked more lately. I believe my fibroid is still growing. I have 2 little ones. I’ve always thought I would have more kids, but I’m happy I was able to have them. I’m 38 now. I still feel like I’ve got some good child bearing years in me. But I’m considered high risk if I get PG. I risk premature delivery and would have to have a 3rd c-section if I get PG, because my fibroid blocks the cervix. Plus, I’m getting older and it just gets riskier in general for both mom and child.
Sophia – are you ok now with having your cervix removed? Do you feel any different? I’m still debating whether or not to have mine removed. It’s good that we’re free to make choices, but it’s also hard to know what’s the right one. You’ve really got to do your research. How long did it take you to recover from surgery? Was the pain very bad? How long were you on pain medication?
Sophia and everyone, thank you for sharing your stories. It’s always good to know there are others with similar situations. It’s good to know we’re not alone.
July 28, 2007 at 10:28 am
Hello again. Scanning through all the blogging here and read Fibroid Free. Very positive story on the myomectomy and funny. Wanted to find out how you’re doing about a year later now. Are you still fibroid free? That was my concern about having a myomectomy – was that the fibroids would come back and that I would need to have surgery again. Hope all is well with you. Would love to hear your update. Thanks.
July 29, 2007 at 3:33 am
hi eclectic geek,
i wrote in january 2007 regarding my ufe surgery. at the time, i felt discouraged by the addiional bleeding i had and general state of health. now, my periods are lighter – i still have a day or two of heavy bleeding, but not at all like it once was for me. plus, i have lost close to 10 lbs. from the surgery alone. that extra weight from the fibroids or my eating more probably had something to do with it. i wanted to thank you for your great comments/advice, back when i was in some pain and skeptical of the surgery. i feel alot better, and although i still worry that it will all come back, i am more prepared and in a good place in my life, personally etc.
thanks again for this forum and best to you.
eyelash
August 2, 2007 at 11:24 am
Forgive me ladies, but have any of you suffered from constipation that lead to hemrhoids? My hemrhoids flare up at menstruation and I was just wondering if anyone else has experienced this. I have a fibroid (8.0 x 7.8 x 7.0) that is pressing against both my bladder and my colon. I hope that this is not TMI.
Take care ladies.
August 3, 2007 at 11:45 am
I’ve been having some pain in what seems to be my pelvis/bottom/lower back and I am wondering if it has anything to do with my fibroids or the endometrial ablation I had done in Oct. 06…
It isn’t clear to me when it started, but I find that it is painful when I’ve been sitting for a while, and really painful to stand up sometimes — worse the longer I’ve been sitting — and it can *really, really* burn when I start to stand up…I have to stand very slowly and brace myself for the pain. It feels like it is in the bones on either side of my coccyx.
It is weird because I don’t know what caused it, it doesn’t hurt *at all* when I’m standing or lying down, or when I first sit down. I almost wonder if something could have happened while my legs were in the stirrups…. yet if it were a bruise, that would have resolved a while ago. I wish I’d noticed when it first started happening…because I really don’t know. I never thought it continue to hurt for so long.
Thoughts anyone?
Amy
September 3, 2007 at 2:42 pm
I do not know of anyone offering UAE in Kenya. I do know that the procedure is available in South Africa, could be having the contacts,
Thanks,
Esther
October 2, 2007 at 5:43 am
Hi,
I stumbled on your website in my search to learn more about fibroids. I have been having a hard time with it since I was diagnosed mid last year. I was told then that they were small and there was no need to do anything but I still did not feel okay and was told a month a go that I have numerous fibroids and they are quite big (I don’t have dimensions). I have also become anaemic and I have a problem with my breathing…not that I get tired just that I seem to have to take deeper breaths…itsa bit difficult to explain. All doctors I have seen think this is related to the low blood levels. I have been on iron tablet for quite a while now and the blood levels have improved (from about 9 – 11.4) but I’m still not comfortable with my breathing. Did anyone have problems with their breathing? I haven’t been able to read all the posts but I just feel awful and I want an end to this.
October 4, 2007 at 12:20 pm
Hi Emi, welcome. Yes, I remember breathing funny – deep breathing included — like the air was thin — when I was anemic… it did go away, I’m not sure at what point though. I also had all the other anemia related things, thin nails, dull hair, low energy, fuzzy thinking… yuk. I had a transfusion, I’m amazed how many people aren’t given or suggested that option — I now think it is really hard on our system to be so anemic…and I wonder how long it really takes our body to recover. I also ate a lot of liverwurst of all things (I love the all-natural stuff from whole foods – an orange tube — spread some on crackers… yum I think my body knew it needed it) I like to think it helped.
October 9, 2007 at 11:43 am
Hi Amy,
Thank you so very much for replying. I was beginning to really get worried. I have been trying to read all the posts and understand a little more. This website is great because it lets you know that there a lot of women out with similar cases. In the last week or so, my stomach has really grown. How fast can these things grow? When I saw the doctor last month, he said the fibroids gave the impression that I was 12 – 13 weeks pregnant but I did not notice any change in my waist line …all of a sudden, pow! Huge waist line now! Also have noticed that I eat a little and my stomach gets very distended. And if I eat a lot I have to battle with indigestion. This is really uncomfortable. Forgive me for moaning…but
( Now I have to consider treatment options.
October 13, 2007 at 4:58 pm
Hi Emi,
I didn’t have your symptoms, but it sounds like it all depends on their location…. what they bump up against!
I just noticed something potentially important on the left side of these posts — up under the “Pubmed/Uterine Fibroid” links, it’s entitled:
“Dietary tomato powder supplementation in the prevention of leiomyoma of the oviduct in the Japanese quail.” Hell, I’m going to start trying to have tomato sauce every day… just in case it helps! I also heard it is good for preventing prostrate cancer…. so good for significant others too!
October 31, 2007 at 1:53 pm
Hi just wanted to say i really enjoyed reading all your posts and have found more informaion on fibroids here than Anywhere else. Have fibroids myself n have decided to have UFE after talking to my gyne, the second one i might add. The first one was Male n told me i was over 40 n didnt need my womb so he would whip the whole lot out for me including ovaries, i left his place Very Quickly and my GP refered me to a wonderful Doc in Dublin (Ireland) who explained treatment options n gave me some time to think about what I wanted not what was quickest for her. Have found this site really informative n has answered lots of questions for me….. Thanks Siobhan
November 18, 2007 at 1:45 pm
Hi all,
I’m so glad I found this site – it’s one of the things keeping me sane for the next couple of months til my ab myo….
One of the major symptoms I have, which was the catalyst for my trip to the ER and (finally) diagnosis, is vomiting from the pain of the cramping. Am I the only one? Usually days 2 & 3 of my period, I’m stuck at home on the couch or in the bathroom, sick as a dog. Not to mention the back and leg pain which makes it hard to walk, dizziness, tiredness, and the horrendous bleeding, and the fact that since July, my hormones are so out of whack, I have gone from teasing my fiancee to fool around almost daily to… nothing for 2 months now – I have NO sex drive at all! Poor guy! (Poor me!!!)
The docs found 2 largish fibroids, one at the top/back of my uterus, which is why the ab myo. I’m nervous about the surgery and recovery, but so much less so since reading through this site! I want my life back!
Thank you, thank you, thank you to all the wonderful, strong women here sharing your experiences!
Chelsea
November 29, 2007 at 10:57 am
One of the most annoying symptoms I experience with my fibroids is watery discharge, which starts when my period is over. I used to only have the discharge for a week or two, but now it’s all the time. I can’t remember what life was like before constantly wearing panty liners and always making sure I have a supply of them with me wherever I go.
November 30, 2007 at 12:02 am
Hello to all of you,
I feel kind of silly searching for answers when some of you are suffering far worse than I have been. I was having unusual pelvic pain and pressure before my cycle each month for about a year. I finally sucked it up and went to see my PCP. After dodging a cancer scare, we found out that the exophytic fibroid is only 3 cm! Why so much pain for one so small? Spotting between periods, severe cramping, and some clotting, though I am not anemic…but one tumor, that tiny. My GYN has been giving me Indocin, but it’s almost a panacea. I’m told this thing is on a stalk and she thinks it’s “probably” degenerating. Any way to tell for sure? I may go for a second opinion soon. Something’s gotta give.
Thank you for allowing me to share!
SeaPea (my initials, C.P.)
)
December 27, 2007 at 6:11 pm
I found your site by surfing the net and thank you! Mid Dec 07 an ultrasound (internal and external) found a 5 X 4 X 5 cm posteriorly subserosal fibroid. I’m 51 and in perimenopause. I skipped 2 months of periods (Sept and Oct) and on Nov 9 started my period which hasn’t stopped. It is like a rain shower all the time…some days it is drizzle or light, some days it is a medium steady rain and then there are days it is like a hurricane with down pours and gushes with clots. I’ve been doing acupuncture to manage the bleeding and clots. The clots have gone away, but the bleeding is still there. The bleeding was so bad on Dec 24, I went to the ER. Put me on megestrol acetate 40 mg to control bleeding. It stopped the heavy bleeding, but the bleeding is still there. I go the OBGYN tomorrow for discussion. I’ve been going to a Naturalpath for 18 months for my periomenopause and been doing well managing perimenopause through herbs and acupuncture – until Nov 07 when all help broke loose. I now find myself glued to the internet searching for options and information. This site has been helpful knowing many others are dealing with this same thing!
December 31, 2007 at 12:10 am
Hi VLE,
I’m 52 and have two fiboids and had some of the symptoms you’ve described, except that I’m postmenopausal and on hormone replacement therapy. I’m wondering if it is really your only fibroid since typically subserosal fibroids don’t have bleeding associated with them. I ended up having a hysteroscopy with an endometrial ablation which completely took care of my bleeding problem….but that was when the doctor discovered a very small submucosal fibroid which he removed. I think it was the culprit. Anyway, ask about an endometrial ablation…mine was a cinch… I’ve written a lot about it else where in this site.
Best,
Amy
January 5, 2008 at 10:57 pm
Hi All,
Well, after 3 years dealing with symptoms, several weeks on the web and many sleepless nights, I have come to a decision regarding my fibroids. I have several (4-5) 4-5cm tumors which are filling up my uterus. Bleeding is heavy during menstruation, but none in between. Pressure is growing as the fibroids do. At times I can’t lay on my stomach. The largest tumor is submucousal and not removable by myomectomy. I have looked at other options, but want a guaranteed fix. Have decided that hysterectomy is the only sensible medical intervention for me. I am 40 (in 2 weeks) and a long way from menopause and natural fibroid shrinkage. I have 2 fantastic kids, ages 11 and 13 (no desire for any more). However, I am a yoga teacher and a strong proponent of self healing and mind body connection. I have opted to postpone surgery for the next 8 months and to dive head first into alternative treatments and to take the next several months to take care of myself. I figure, best case, I will avoid surgery and rushing into a decision. Worst case, I will be in great physical shape prior to surgery. In any case, I will know that I will have done everything I could. Wish me luck. No coffee tomorrow.
For those of you who have posted considering surgery but who still want children, maybe you could delay a few more months as well. It is a huge decision for you and not life threatening, so take your time and make a decision only when it is very clear. I am grateful that this became a post baby problem for me….
Best to you all.
Rochelle
January 6, 2008 at 12:13 am
Hi Rochelle: I was wondering if you have had a second opinion on the submucosal fibroid. I was under the impression that with a skilled and experienced doctor a Myomectomy should be possible for fibroid removal. Take care and good luck to whatever choose and whenever you choose it.
January 7, 2008 at 4:20 am
Rochelle, I was surprised that you said they can’t remove your submucosal… I had a hysteroscopic endometrial ablation using a rollerball — (not the other kind of EA — they can’t see what they are doing) in which my doctor removed a small submucosal fibroid that was causing really bad bleeding with each period… anyway it might be something to look into…
January 7, 2008 at 6:49 am
Hi all,
I had an abdominal hysterectomy in 1996. Cervix out, ovaries left in. I was 42 at the time. I couldn’t live with the pain any longer–no laying on my stomach, and just bumping my stomach would cause it to ache for hours. Also passed massive clots, etc. Anyway, best thing ever! Very easy recovery and little pain despite the longish surgery. (Had my gall bladder removed as well) I woke up in recovery and squeezed the pump–once. After that I just wasn’t in that much pain. Nurses insisted I at least take Tylenol (regular over the counter stuff). (OK-the gas pains did hurt but the morphine will constipate you & since I didn’t use it except once, I had no problems going to the bathroom…just a few hours of gas pain and then it was over—I had the same gas pain after my appendectomy and yeah, it hurt but pain killers would not have helped and would have made it worse. )
I went home after 3 days and never took any pain killers. The hospital insisted I take a bottle of Vicodin home, which I threw in the trash as soon as I got home. I have no idea why it didn’t hurt much. I’m not a stoic! Fibroid was the size of a large melon–about 5 months pregnant size per my surgeon. I wish I had had the surgery much earlier. Best of luck to anyone who is going to have a hysto–it’s really going to be OK. And I’ve had zero problems in my uh…intimate life either. It did take a bit longer to recover than I thought–so I read and went for walks. I lived up 2 flights of stairs and managed them fine.
January 20, 2008 at 11:18 pm
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http://www.msn.com
February 14, 2008 at 3:07 am
hi everyone… I’m a geek too… currently working as a programmer. forgive me because my English is not very good since English is not my first language.
I have 2 fibroids at the top back of my uterus and 1 ovarian cyst. my largest fibroid is 9.7cm and the smaller one is located ontop of my larger fibroid.
i discovered this when i went to check with my gynae because i had vaginismus.
my first gynae suggested two operations, one was fenton’s surgery which was to widen my vaginal opening and myomectomy. i went for a second opinion & this other gynae suggested myomectomy and some botox injection on my vaginal passage. the third gynae that i went to said that she needed to operate on my uterus to remove the fibroids and ovarian cyst but said that i can cure my vaginismus minus the previously suggested procedures.
she prescribed me some anaesthetic gel to apply on my vaginal opening when having sex. she didnt seem in a rush to perform myomectomy and told me that the fibroids and ovarian cyst is not life-threatening. but told me to return to her office once my vaginismus is cured.
thankfully it is cured now (thanks to my very patient hubby), but i have yet to go to the doctor’s office.
i’m trying to conceive. will i jeopardize my chances of getting pregnant if i decided to go through with the surgery? did any of you have children after myomectomy?
oh, by the way.. i’m 31.
February 25, 2008 at 9:13 am
Hi
God this site is a sight (lol) for sore eyes. I have small fibroids which until recently were tolerable. Recently though I have started gushing and sometimes mid cycle too with no warning. Now, having read some of the enteries on the forum I’ve realised I’m not mad or dying. So thank you ladies for bearing your souls (and gussets).
My real problem is that after sex I start bleeding the next morning for two days or so. Quite heavy and with clots. Does anyone alse have this problem? This along with my epic periods means that I have more bleeding days in the month than not. How do you cope? Any hints as to help? I mentioned it to my doctor and she gave me a diagphram so that I can have sex while bleeding (it holds back the blood. She kind of missed the point. It’s not the not having sex because I’m bleeding that’s the problem it’s the bleeding afterwards.
Any advice would be welcome as the doctors is hysterectomy, hysterectomy, hysterectomy.
February 26, 2008 at 3:48 am
Hi Dee Dee, are you sure you don’t have a polyp in there too… I’ve had fibroid bleeding and polyp bleeding and the latter was like you described… and polyps are generally removed in a relatively simple doctor’s office procedure…. if that has been ruled out, then ask about a D & C or an endometrial ablation…. best!
March 11, 2008 at 10:01 pm
I haven’t gone to the doctor yet, waiting for an appointment. I was wondering if someone could tell me if my symptoms sound like a fibroid. My mom had them and she thinks I may have one. For the past 6 months, I’ve had irregular bleeding between my periods. The bleeding isn’t like a normal period. It’s a dark brown color and it’s not that heavy, mostly when I wipe. Has anyone ever had this kind of bleeding?
I can pee more than 20 times a day, which I never thought to be a symptom. I also have lower back pain, pain in thigh area. My menstrual cycle can sometimes be severe, bad cramping and heavy bleeding that lasts at least 10 days. I would appreciate any additional info. Thanks G
I’m 27, almost 28 is this common for my age?
March 11, 2008 at 10:01 pm
I haven’t gone to the doctor yet, waiting for an appointment. I was wondering if someone could tell me if my symptoms sound like a fibroid. My mom had them and she thinks I may have one. For the past 6 months, I’ve had irregular bleeding between my periods. The bleeding isn’t like a normal period. It’s a dark brown color and it’s not that heavy, mostly when I wipe. Has anyone ever had this kind of bleeding?
I can pee more than 20 times a day, which I never thought to be a symptom. I also have lower back pain, pain in thigh area. My menstrual cycle can sometimes be severe, bad cramping and heavy bleeding that lasts at least 10 days. I would appreciate any additional info. Thanks G
I’m 27, almost 28 is this common for my age?
March 11, 2008 at 10:46 pm
I tried asking this on a previous post but it was never published… maybe the story of my lengthy physical and emotional suffering was too long and boring?
I’ll try the truncated version and cut to the chase, as I am *quite* desperate for some input.
I have at least five fibroids, ranging from 3.5 to 7.5cm. I have had horrible abdominal bloating and discomfort along with lack of appetite for the past year. I am going to have my fibroids removed, but I am concerned that it will not solve my main complaints because most of my docs think that there is a secondary problem and that the fibroids are not to blame for the bloating. This is massive bloating that is not accounted for by the size of the fibroids, but rather some sort of motility problem that is creating excess gas in my small intestine (which I do not pass).
I’ve heard others complaing of bloating, but was this resolved after surgery? I am horribly depressed and self-concious– none of my clothes fit, no dietary changes help (I’ve tried everything). Please let me know if you’ve had this experience.
I hope this gets posted!!! Please edit as you see fit, I would just really love some input!!!!!!!!
March 19, 2008 at 5:50 am
Hi!
I’m 24 yrs. old and working here in Singapore. I find this topic very interesting and it also made me think that I also have uterine fibroid. Although, I’m still not sure about it. But here’s what I experience.. A few days before my period., my abdomen literally looks swollen that I couldn’t wear the pants that I usually wear without my period. I also couldn’t tuck my clothes in because I’m scared that the people I would come across with would notice my bulging abdomen as it is prominent. I experience lower back pain, headache or pelvic pain whenever I have my period. Even if I loose wait, it is still prominent. I have regular menstrual periods. I recently experience the urge to often go to the toilet to pee and sometimes my lower left abdomen is painful but tolerable. Sometimes, my upper left thigh and lower left abdomen is numb. Can someone advise me on what to do or knows anything about what these symptoms mean.. Is it something fatal?..I’m scared to go to the doctor.. help please..
March 19, 2008 at 11:34 pm
Haydee;
Please go see your doctor. Some of these symptoms on their own would sound like normal menstrual symptoms, but all taken together they may suggest fibroids or possibly something more serious. If you have anything seriously going wrong, time could be a crucial factor in the options that you have regarding treatment. No matter what, you need to get more information! Going to the doctor should not be scary… NOT knowing what this is and potentially putting yourself in jeopardy, now THAT’s scary…
Make an appointment to see an obgyn right away! Good luck.
March 24, 2008 at 12:55 am
I am 27 years old. For the last couple of years I have suffered for severe menstruation bleeding. my cramps normally last 2 weeks every month. On top of that I always feel full, my stomach has grown bigger despite the fact that i exercise a lot and I have a constant urge to urinate. Lately the discomfort and pain have become too much and I’ve gone to the gyno. It was found that my uterus has grown in size and I have 3 fibroids anteriorly fundal measuring 5.9cm, posteriorly 5.7 and 2.5 cm. I am extermely aneamic with my iron level being <1. Also my right ovary has a cyst measuring 3.4 cm and my left ovaries contained 23 follicles. My husband and I do not want to have kids. The gyno recommended that i have a hysterectomy without removing my ovaries and cervix. I desperately need to find a fix for the fibroids. The doc said because of my age the fibroids might come back and i might require further surgery. I do like like the idea of having more surgery. Anyone has any advice??? Should I go for the surgery? Thanks
March 24, 2008 at 4:51 pm
Hi Mary,
Did your doctor suggest myomectomy? This is another form of surgery, which removes the fibroids but leaves the uterus in tact. Unless you are okay with going into menopause at 27yrs old. Additionally, if preserving fertility is not a major concern you can try some of the other methods which are discussed on this website (exalbate, abalation etc).
I know it’s scary and painful to deal with the symptoms as well, but surgery can’t be undone so please don’t rush to a decision just yet. Seek out 2nd and 3rd opinions if needed. I had an ovarian cyst about the same size as yours removed in January via laparoscopy..its not as invasive as some other techniques. I was back at work in 2-3 days. You can do that for the cysts perhaps..and do more research on Fibroids. I have fibroids too, one is around tennis ball size the other 4-5 are smaller at 2.5cm – I am 32 so not much older than you but want to preserve my chances of having a baby. My ovarian cyst had ruptured, so after having it removed my pain level is more bearable actually. Even my periods have been a little lighter the last two times. As long as my fibroid symptoms do not worsen all the docs i visited said to hold off on myomectomy.
But in the end do whatever you feel is most suited for your personal situation. Hang in there
March 25, 2008 at 12:21 am
Hi Ni,
Thanks for your advice. The doc mentioned myomectomy but because of my age, they said its goin to grown again. I cannot bear the thought of that. The pain and my pregnant looking stomach is very depressing. Also I read woman from African background more prone to fibroids. I am Mixed black/earopean. My mum and her younger sister suffered a lot from Fibroid just like me. Also because I alsways feel full i barely drink anything or eat anything during the day. I really want the hysterectomy (as long as i keep my ovaries). I really cannot handle the discomfort anymore. Anyone face similar thing?
March 31, 2008 at 2:21 pm
Hey ladies…
I am so glad I found this website! I’m a 26 yo recently diagnosed with uterine fibroids. After about two years of the most excruciating, painful cramps during my period AND sex, I finally told my doctor to take her “it’s just gas” and “just take a motrin before you have sex” theories and shove it. My new doctor (a male, go figure) finally took me seriously and did an ultrasound. They found a 2cm mass. Ok…. So, my doc does a diagnostic hysteroscopy and laparoscopy only to discover my uterus is riddled with 15-20 fibroids. Fantastic!
So my abdominal myomectomy is scheduled for April 28th.
I was so happy to find this website and to discover I am not the only one who is going through this… I can’t wait until I am fibroid free and will be able to actually enjoy sex with my boyfriend!!
Thanks for listening
Nikki
March 31, 2008 at 5:26 pm
Hi all. I am in Week #2 of post-myomectomy surgery. I had 6 firbroids… an “Idaho Potato” (quoting my doctor… ) 2 “plums” and 3 “cherries”. Ha haha. The largest was “pedunculated” which means it was on the outside of the uterus, connected by a stalk. I had an eposode of severe abdominal pain 2 months ago and that’s when it was discovered that this large fibroid was starting to take up too much real estate in my belly. Also, my doc said that when a pedunculated fibroid starts to outgrow its blood supply, it starts to die and that causes a lot of pain. If it died all the way and then broke off the stalk, it would have been an emergency situation because it’s not good to have4 a potoato floating around one’s abdomen.
Anyway, I’m 46 and past my child-bearing desires, but I decided to keep my uterus anyway. Not sure why… and I am risking a re-invasion, but I just felt like I wanted it if I could still have it. The 5 fibroids that were in the uterine walls were removed and those incisions were closed.
So basically, I’ve had a “C-section” and delivered sextuplet fibroids!
Anyway, I feel “pretty good” now at Day 11 post-surgery. Can’t drive for 2 more weeks but Ic an get around OK and I am just resting a lot.
Happy to answer any questions about surgery. Good luck to all!
April 5, 2008 at 3:19 am
So, since no-one has addressed my question, I guess I’ll just answer it myself and hope that it is helpful. MRI revealed many, many fibroids, some of which are filling up my bowel region. This is what is causing the abdominal distention and lack of appetite that has been so troubling for me. For those of you wondering about weight, among all of the other small fibroids are about five of them that average lemon-sized. Doc says they probably weigh about 5 or 6 lbs. Looking forward to a myomectomy, although I am 36 and would still like to have children and I’m very worried about my uterus. However, at this point, I will settle for symptom relief.
April 5, 2008 at 10:49 am
Hi Eve,
Sorry no one’s answered your question….I can’t since I haven’t experienced your symptoms or had a myomectomy… but if you haven’t already, try asking at: http://blog.geekwithfibroids.com/2007/03/25/how-are-you-feeling-after-your-abdominal-myomectomy-part-4/
there are a lot of regulars there who can tell you about their experience too, even though you’ve figured a lot out by now! Best!
April 5, 2008 at 11:11 am
Hi,
I’m 25 and have a big fibroid. I was just wondering if anyone else experienced changes in size throughout their cycles… it seems like my belly is getting bigger and smaller for no reason I can see, and way too fast for it to be weight gain or loss… does this happen to anyone else? at this point I’m wondering if its all in my head!
also I’m going to have an ab myo and was wonder how long it actually takes before you can get back to normal life. I am young and a truly addicted salsa dancer and just wonder when I’ll be back on the dance floor after surgery!
salsera
April 5, 2008 at 11:36 pm
Hi, I am 27 and I have 3 large fibroids. I exercise a lot and like to keep fit. while I’m fit, my belly has just been getting bigger and sometimes it get swollen specially when I’m having my period. I don’t know about you but I have severe cramps, bleed a lot, iron level is less that 1, lower back pain, legs paid among other things. My gyn said that I am experiencing almost all the symptons and as such has recommended a hysterectomy. To be honest for the last 2 years I’ve almost slowly stop living. I used to be very active but no more. I just want to get back to normal and don’t wan the fibroids to grow back. My auntie had fibroids and undergo 4 myo as she wanted a kid badly and m mum had a hyst at 35 for fibroids as well. My husband is being supportive and want me to do whatever is believe is better for myself s we don’t want kids.
April 7, 2008 at 8:23 am
Salsera & Amy,
Yes, I experienced changes in the sizes of my fibroids depending on my menstrual cycle. Fibroids react to levels of estrogen and they swell up.
You can see from my post above that I am recovering from an abdominal myomectomy. I am now at Day 17 post-surgery and I really feel great. My incision site is sore and I tire more easily, but basically I feel better than I did before the surgery. No more constipation, bloating, leg pain, cramping, etc. I also used to suffer terrible PMS before the surgery and now that I understand how the estrogen is affected by fibroids, I wonder if I will not have such bad depresion and crankiness before my periods.
Although I am 46, I elected to keep my uterus. The surgeon was able to remove the fibroids and save the uterus. It’s an option for you to consider. Pregnancy after such a procedure can be very risky.. so get some expert advice or think about having your tubes tied to minimize the risk. I may regret my decision in the future if more fibroids occur and I need a hysterectomy.
As for total recovery time, Salsera… I am not allowed to do gym exercise or situps for 3 months post-surgery. That’s probably about the amount of time you’ll need to heal internally, depending on how extensive the work is on your uterus.
Pam
April 7, 2008 at 4:45 pm
Hello Everyone,
I posted in January and have had a few changes in my thinking since then. After a 2nd and 3rd opinion I found a surgeon in Boston who would be able to perform a myomectomy. (Upon MRI it was found that I have 7 large fibroids rather than the 4-5 seen with a vaginal ultrasound). This surgeon recommended that I consider Uterine Artery Embolization. I met with a doc today who says I am a good candidate. Has anyone had this procedure??? I have spent the past few months taking herbal remedies etc and to date, have seen no changes in my symptoms.
April 7, 2008 at 5:16 pm
Pam,
Thanks for replying to my post. 3 months seems like forever, I’m a highly addicted salsa dancer and I’m not sure I’ll be able to resist the 3 months! at 17 days post op are you able to go to work/walk short distances/go shopping etc?
Its hard trying to get a sense of how much this surgery will disrupt my life! I know its worth it in the end and I can’t continue the way things are going but 3 months!!
salsera
April 7, 2008 at 7:17 pm
Rochelle,
I’ve read a lot about UFE and it seems like a great alternative to surgery, but results are not always consistent. Also, are you hoping to preserve your ability to become pregnant? UFE actually deadens the part of the uterine wall that is embolized because it permanently cuts off its blood supply. If you hope to become pregnant after whichever procedure you elect, that would be something to think about. Best of luck.
April 7, 2008 at 8:59 pm
Hi Eve,
Thanks for your reply. I am not planning on having more children. I have two, aged 14 and 12, so that is not a concern for me in relation to UFE. I know in many minds the procedure is still very new, but I will be going to Brigham and Women’s Hospital in Boston, MA. They are self proclaimed pioneers in the technology and say that there success rate is higher than the national norm. The doctor who would do the procedure has been doing UFE for fibroids for more than 5 years. They also consider their high success/satisfaction rate is due to they screen prospective patients well. (i.e. they will turn women away if they don’t think it will work. Of course I am still nervous about it, so I would love to talk to someone who has had it done.
April 25, 2008 at 2:36 pm
Hello,
I have a 4.5cm fibroid on the top of my uterus. I’m 35 yrs old and no children. Doctor found it 2 months ago after complains of abdomen pain and stomach distended. I look as if i’m 4 months prengant and i weight 113 pounds. OBGYN dr does not want to remove it claiming it’s not the cause of the fibroid but i have ever test done to me and they all come back ok except for having this fibroid. In 2 months i been in the hospital twice for 3 days each with test constist of colonoscopy, EGD, small bowel x-ray serials, 3 CT scans, 4 transabdominal and endovaginal sonograms, blood test with shows red blood cell is low NOTsure what to do. I did find one dr willing to do a laparoscopy to look around but says the fibroid is not why i bloated up 2 dress sizes. I has a 0 dress size now i’m a 3 dress size and no doctor can tell me why? Please help with so advice.
By the way i have seen a general surgen, my Primary doctor, 2 different gastroenterology, and OBGNY.
May 5, 2008 at 4:37 pm
Hi Ladies,
Well I did it. I am 4 days post UFE and feeling pretty good. Low grade fever, some cramping and bleeding, but nothing compared to what many of us usually experience. I am still a couple of months from knowing my final results re: bleeding and 6 months from knowing how much the fibroids will shrink. I feel like this was a good 1st step for me and am happy to share my experience.
To BETTY: It was my experience that I could get extremely bloated depending on the time of the month. I am also petite. Right after my period I am my usual size 0-2, mid cycle, more like a 4-6. I wear loose fitting tops to hide my belly. So, while I can’t diagnose your situation, I would not be surprised if the fibroid is causing this. Keep doing what you are doing-asking various docs their opinions.
June 16, 2008 at 11:37 am
I have been doing some research on these little creeps, which i just found out i have. My DH and i would like to try and conceive but thinking it might be in the way. Any helpful thoughts out there. Should i have it removed to start trying? My fibroid is about golf ball size and not causing any real problems. Is this why it’s been so hard to get pregnant? I need answers. LOL Thanks!!
June 19, 2008 at 11:11 pm
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June 25, 2008 at 11:09 pm
Can fibroids cause nearby lymph nodes to become slightly enlarged (but <2 cm)? If so, what would cause that?
July 28, 2008 at 11:56 am
wow, what a site. I had no idea there were that many women out there suffering as much as my friend Patti and I. I will forward this site to her too. I don’t want a hysterectomy but everyone keeps telling me I need one because my fibroid (the one left they couldn’t get after myomectomy) is in the wall of my uterus sadly. Anyone know of a doc that will preserve the uterus in the Los Angeles area? I will also check out the doctor rating site. Also, they keep putting Patti on hormones like sythetic progestins and now the pill…!! I’ve heard of lupron, but not more estrogen for pete’s sake! Patti is having surgery in Oct. Hopefully this will help her.
August 6, 2008 at 6:25 pm
New fibroid symptom or menopause?
Age 35 & off prescription birthcontrol: Began tracking my periods – haven’t missed one in 10 years… nearly always 21-28 day cycles lasting 5-7 days. Black Strap Molasses was an instant relief (1 T. in ea. 2-3 c. coffee, daily) when periods became extremely heavy, with longest lasting 18 days (1 yr. ago). Abdomen visibily smaller, nearly flat.
Today is day 35 since start of last period. Almost 45 yrs. old. Only 1 chance of pregnancy – doubtful as fun-time was 3 days ago.
? – Has anyone reported fibroids blocking periods? I had all usual pre-period symptoms and am experiencing a 2-3″ abdominal gain this week.
Re-started Molasses today… awaiting some relief.
PS – only change during last month was 20 day antibiotics for foot & gum infections. No medicines otherwise.
August 17, 2008 at 4:12 am
This is a great site. I found comfort in reading the comments. I am very afraid of the ‘H’ word and it’s good to know that there are so many women out there who have made a point to look at other options. My last ultrasound showed that my fibroids, which have been causing a lot of problems, have grown, the largest of which is 18×9x9 cm. They also discovered a 5×4 cm calcification. I visit the gyn in two weeks. For a long time I put off doing anything because I’m 37 and even though time is running out, I would one day like to have some children. Also, I know that if one can survive until menopause, then sometimes they just go away. However, my mom, sister, and aunt have all had this issue, and my aunt and sister both had hysterectomies. I’m kinda sick and tired of the cramping, clotting, bleeding, bloating, weight issues, and did I mention the bleeding? Anyway, thanks for the comfort your experiences bring–
Abbi
August 17, 2008 at 12:13 pm
Abbi, sorry to hear of your fibroid friends and such bad symptoms. For me I didn’t know they were there much until they showed up on an ultrasound after a m/c. Maybe your gyn can refer you to a good surgeon who can help you with the fibroids rather than just recommend a hysterectomy. Hang in there.
Brandy
August 17, 2008 at 8:22 pm
Hi Abbi,
I know the idea of hysterectomy may not be appealing. Get some 2nd & 3rd opinions on what your options are. Quality of life is important as well, so you shouldn’t be afraid of surgery or “H” if it comes to that.
August 19, 2008 at 10:42 pm
Thanks for the encouragement Brandy and NI. I’m getting the idea that getting more than one opinion is very important, and that there are options to research. I will have to work on getting rid of the fear and just do what needs to be done. You’re right–quality of life is important, and suffering is not always noble.
August 31, 2008 at 2:47 am
Hi,
I had a large fibroid removed about 6 or 7 years ago via a myomectomy. It was attached to my uterus( Predunculated). Since then( about 3 weeks ago my DR. found another during a pelvic exam) my doctor states I have two that have grown back( but she stated they are in a position that is not harmful, I had a ultrasound done and she wants me to follow-up with a MRI just to make sure what you suspects is true, what I have come to realize is a MRI is the best way to find where and how big the fibroids are). I want to have kids. I have not had any pain from this one or the previous one that was removed ( did I mention weigh 10 pounds, look like a football). I am trying to get pregnant and my doctor is giving me 6 months. But I am in to Natural Remedies and what I have found is a herb called Vitex it works wonders in some cases it has help shrink fibroids and uterine cysts. It also is use to assist in getting pregnant. What it does is balance your hormones so that you are not over producing Estrogen which causes fibroids to grow. I have done tons of research on fibroids. Fill free to ask me any questions. I am a nursing student I graduate in Jan.09 plus I have a lot of resources because I have been in the medical field for many years. But I do have one question has anyone ever had more than one myomectomy?
Also researchs shows that most fibroids grow back in 5 o 7 years. Usually, not in the same place; unless the doctor does not remove the root(base). So keep that in mind if you decide to have one or more remove and you have not had children the bes thing to do is get pregnant as soon as the Doctor releases you.
I will keep everyone in my prays.
God Bless…
Kim
September 13, 2008 at 7:17 am
I found the site so useful and only wish I had found it some time ago. I have been visiting a consultant urogynaecologist for the past 18 months “a professor” in private practice! Im a geek too, always on the internet and believing its the fountain of all knowledge. I knew this guy was not correctly diagnosing my problems. I approached him because, although I had all the other problems associated with Firboids, heavy periods, clotting, I have had these all of my life and really thought nothing much of it. Even my enormous stomach I put down to having had 3 children and lack of exercise. The consultant operated on me for incontinence which (surprise surpirse) failed. He was just about to embark on another invasive abdominal operation which they call a colpus suspension when I sudenly decided to trust my instincts and seek a second opinion. Thank God. The new consultant identified the presence of enormous fibroids within the first ten minutes of consultation and is whipping them out on Tuesday coming! He believes that once they have been removed, I will no longer be incontinent, no longer have sleepless nights where I cannot sleep because I need to visit the bathroom every couple of hours, end of heavy and elongated periods and end of looking like I am 6 months pregnant the whole time. How could the first “gynaecologist” have missed this when its so common in a woman of my age (45 when I first consulted him!) Now 47. I have wasted almost two years and suffered enormously as a result of his incompetence to identify the problem. Your site has helped me immensely and I have every hope for the future.
September 13, 2008 at 10:55 am
Hazel, I agree it is absolutely shocking that he missed your fibroid…how is that possible! Didn’t he ever perform a pelvic exam? I have a 9cm one an a couple of smaller ones, and my different doctors are able to feel the fibroids even with a large stomach. Hopefully, the unnecessary surgery they already performed doesn’t some how affect the outcome of this surgery — and I certainly hope you give your first Dr. a piece of your mind! I’d even consider reporting him or charging him with malpractice. As you said, with the high incidence of fibroids, it seems that’s one of the first things they would check for. Good luck with your surgery! Keep us posted.
September 22, 2008 at 4:06 pm
I too have 2 large fibroids, equivalent to 3 months preggers when discovered in July of this year. Since I am 46 years old & no kids my gyn & PCP both recommended hysterectomy, my second opinion doctor recommended UFE. Even though I am 46 and have not had kids I still want to keep my uterus on ovaries, so I am opting to Ab myo sometime next year, am waiting on getting into my husband’s insurance so I can go get it done by doc recommended by my gyn. I am going for a re intra vag. sonogram next month and am terrified that they are larger. I have grown into a size 12 from a size 8. I am sure it’s acombo of not working out anymore and having a pity party most of the time. Can anyone recommend a good doctor for an ab myo in Arlington, Texas?
October 14, 2008 at 3:30 am
Add me to this very long list of fibroid sufferers. I am turning 49 in December. I have had four children, two miscarriages and as a very young teen, an abortion.
and sent me for a CT scan today. Report:Large left uterine fibroid measuring 90mm in transverse dimension and consequent distortion of the endometrium. A smaller fibroid is also seen anteriorly. So, I was right about the fibroid!!! and so I have found this website while investigating for myself what is a fibroid and what can I do about it.
In Feb of this year I decided to go to the Doc and ask for an ultra sound as I was sick of the pain and all the other symptoms described in the above comments. It showed a 9cm fibroid. but it settled for about three months and I thought it had gone. But my last period and this period have been hell!!! The week before this period I was and still am getting pain in the top of my left leg and inside of it. I thought it was my varicous veins playing up and that my undies must be too tight. Then my period started and so did the abdominal pain. I could not sleep sit etc.. Yesterday I went to a Doctor. She said fibroid s do not usually cause painful periods
I have had all the kids, all I want now is to get rid of this thing, even if I have to have a hysterectomy to do it.
Thank you for the good advise, and my prayers also for everyone else.
October 14, 2008 at 12:01 pm
Hi Jennifer, welcome to the club! I also have a 9cm one on the left and a smaller one anteriorly. it still amazes me how little doctors know about fibroids when so many of us suffer from them! Make sure you read up on the DVT section in this blog… you would hate to have that and not know it… not to scare you, but I wonder about that, especially with the pain prior to your period. I have pain during, when my uterus has to expel huge clots! Best to you!
November 3, 2008 at 9:40 pm
Hi there ladies! Gosh, I am so glad to find this site. I have been struggling with my fibroid issues for about 5-6 months. This is such an uncomfortable feeling…the back pain, leg and pelvic region discomfort but the worst thing is the feeling of fullness constantly. I just feel bloated and pregnant everyday. I weighed 100lbs, then 102 lbs, now 106 lbs. I ave always been petite and would like to stay that way but geesh this makes it a little difficult. My OBGYN says that I am a candidate for either of the 3 treatment regimens. I am considering the UFE. Has anyone had this recently? If so have you experienced the relief of the enlarged abdomen and feeling of constant fullness? I would be grateful if someone could let me know.
Thank you ever so much!
Mindy
November 4, 2008 at 12:04 pm
Hi Mindy, go to this spot on this blog:
http://blog.geekwithfibroids.com/2006/09/21/how-are-you-feeling-after-your-uterine-fibroid-embolization/
November 17, 2008 at 12:50 pm
Hello,
I have been dealing with fibroids for two year. I have multiple fibroids the largest one measuring 8cm my doctor advised me to get a hysterectomy(I chose to wait and watch). I inquired about having a myomectomy but was told that I have too many fibroids. I am now starting to expiernce lower back pain as well as pain in my legs. I am also very bloated, constipated and bleed rectally(every month before my period). My doctor said that I may have endometriosis. I had a colonoscopy to rule out any colon cancer test came back find…..yeah!! Have anyone else experinced the rectal bleeding??
Phyllis
December 1, 2008 at 4:21 pm
Phyllis, the most obvious to me would be hemorrhoids. When the doc did the colonoscopy was there any observance of them. They can be inside the rectum area as well as visibly and painfully at the rectum opening.
One of the side effects of fibroids is noted to be constipation which can cause the hemorrhoids.
As for me…I was diagonosed with firbroids in May 08, found this site in Sept and commented on my initial problems on the “How are you after your abdominal hystorectomy.” My surgery date is Dec 15, postop is Dec 3, just two days from now. My last cycle started Nov 2 and has not ended.
Was suspected of hypothyroidism in June, retested mid Oct and confirmed. I personally suspect that it is related to the fibroids, the fact I am sensitive to iodine and have carefully avoided consuming anything that stated had iodine in it and sea food products.
Sensitivity is not an alergic reaction process. Alergic reactions involve the immune system. Sensitivies are reactions depending on the consumption of a specific chemical like caffine and food coloring can produce. The intesting thing about sensitivities is they can cross the blood brain barior where alergies do not.
Hypersensitive to iodine is called Iododerma. Deep pestules (blisters) occur on my fingers. They can occur anywhere on the body depending on the individual, amount and format consumed. If you are sensitive to iodine make sure you do not take any medication or radioactive medication/dies. My sister has this same problem and was given a iodine product for a CT scan. Very bad reaction, reaction was handled with prednazone(sp?).
Was tested to check for Hashimitos disease, came back negative. Iodine agrivates the disease. Started very low dose 12.5mcg (1/4 of 50mcg tab) in morning and 75mcg (1/2 150mcg) kelp tab at bed time. Watching for reactions. Non so far.
Research showed iodine daily requirement of 150mcg/day. Supposedly, the America population gets enough iodine through meats, milk, and vegetables, and iodized salt. Meats and milk through iodized salt blocks for the cows and how the milk industry cleans there containers with iodine products and the cow’s teat dip has iodine in it. However, I can not find any information on how much iodine is in a serving of anything. Iodine is only noted as being naturally obtained from products from the sea.
The other factor was a good iorn supply was required for a properly working thyroid. The firboid depleting my iron supply leads me back to the thryoid problem being related to the fibroids.
Anybody else out there been diagnosed with a thyroid problem during their firbroid problems?
December 3, 2008 at 8:41 pm
Hi Ladies -
I am not so much responding to Brenda (sorry!) but to others of you from Sept/Oct – Hazel, Amy, Delia. I just found this site too, and so appreciate the open forum! I find it incredulous that so many docs do NOT think about fibroids as a possibility for the symptoms we suffer from. I just had a “laproscopic hysterectomy” by an amazing doctor here in Denver – and I am so grateful that I had it done! (Laproscopy rocks!!!) I am healing soo quickly, and needed those fibroids OUT, and the uterus too, which I will explain. I just turned 50, and am in quite good shape. One of the symptoms not mentioned very often, however – including on the reading I’ve done so far on this site – is Infection. This is accompanied by high fevers, and in my case, such debilitating body and joint aches I could barely stand up. The past year has been spent looking for the cause of these symptoms, including hospitalization. I’ve had fibroids for about 10 years now, and I know that they have been getting bigger with each year. However, noone ever mentioned that they may be the cause of my illnesses!
The Infectious Disease docs, having ruled everything else out, finally asked me about my uterus, and if I had fibroids. They then deduced – and now it has been confirmed – that the fibroids may be degenerating and becoming necrotic, and thus releasing toxins into my body! Apparently, this is one result of large fibroids. Yes, mine were up to 15 cm, and it was as if I were 5 months pregnant! So, I looked into myomectomy options, but then decided to get a hysto, because I wanted to eliminate ANY possibility of infection in the future. I had other symptoms, also – heavy bleeding, pressure on my bladder – but none so acute as what the fever brought on. I was ready to leave them in until I go into menopause and then they should shrink…
Has anyone else heard of this before?
I’d like women to know of these symptoms of what the infected fibroids can do to us!
Many thanks, and hope for our healthy futures!
-Sally-
December 4, 2008 at 7:42 pm
Sally, from what my gyno told me, the fibroids would not shrink significantly but they would a little and that over 20 years, not emediately.
December 5, 2008 at 10:47 am
I came across this site while searching today! After procrastinating for many years I went for a physical this week and after talking with the dr I am going for an ultra sound today. I am 44 and have 3 teenagers. I thought my heavy periods with large clots were due to age, (I have been dealing with this for 2years now). After the exam my dr says I have an enlarged uterus. I am always tired (waiting for results for iron etc). I sometimes have pain during intercourse, often have a dull ache in lower back and thighs. I was losing weight with weightwatchers but suddenly gained a few pounds and now my weight is up 3 or 4 one week and down the next…no rhyme or reason….meanwhile I am eating healthier than I have ever eaten and workout 4 times a week. So after reading here it seems what I thought was normal is probably not and hopefully I am on my way to finding the cause and a solution>>>>of course tampax will go out of business then..haha!
December 5, 2008 at 1:40 pm
Pre-Op consisted of signing a paper consenting to have Gyno procede with surgery. Went over all the possible solutions to handle the fibroids with the difinitive solution being the hytorectomy. Received a blood test order for Dec 8 and instructions to go to an MRI facility the same day for a chest X-ray(?).
Started a list of things to take to Hospital, trying to keep the kitchen sink at home.
December 15, 2008 at 8:48 pm
Brenda,
thanks for the response I do have hemorrhoids my doc said I should have them removed. I have opted to have a hystorectomy surgery is set for January 20th. So, how did your surgery go? I pray that all is well……did you have laproscopic surgery?
Phyllis
December 19, 2008 at 11:18 am
Two years ago, I had several fibroids removed. the largest was 13 cm. This summer, I found out I have 2 more that have grown in, the largest about 5 cm. What confuses (and frustrates) me, is that I’m in more pain with the 5cm fibroid than I was with the 13cm growth. Now, in all honesty, maybe I’ve just forgotten how much pain that first go-round caused. Still, am I the only one who reads of women having cantelope sized (or larger) fibroids who have no symptoms and thinks, “really? how could you NOT know it’s in there?” Maybe I’m just a bit jealous at their lack of symptoms . . . .
Whatever size your fibroid, whatever extent of your symptoms, I pray God delivers a respite for you and that you have wonderful Christmas!
December 22, 2008 at 8:05 pm
Phylis,
My Dec 15 surgery date was cancelled by the anesthesiologist who did not like my low pulse. He felt my thyroid medication needed to be increased, got that started on the 16th, recording my pulse several times a day, 60 and up, and I have been rescheduled for Dec 29. I will be getting a bikini cut obdominal hystorectomy with the overies removed.
May your surgery go smoothly and recover with little pain
December 24, 2008 at 10:32 pm
Brenda,
sorry to hear that your surgery had to be reschedule. I will be having a bikini cut abdominal hystorectomy as well. Did your doctor tell you that recover would take 6 weeks? I don’t know what I am going to do for six weeks…..I am very active!!
Wishing you a Merry X-mas and a smooth surgery with little pain as well!!
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January 22, 2009 at 1:31 am
Thanks everyone. My fibroids were diagnosed about 2 years ago, and have grown considerably since. I have over 10, the largest being about 7cm (I guess it must be spherical) and the smallest being about 3 cm. They do change size considerable throughtout my cycle and cause mild to sever pain most of the month. My doctors mouth dropped when I told her how much I bleed. It causes problems with my work because i have to leave the classroom a couple of times every class to change my pad and tampon. I am 40 and have decided not to bother with trying to have my own kids because the I’m not prepared to have a myomectomy and then have to deal with this in a few years again. I’m happy to adopt. My issue is that I live in Thailand (American) and have to deal with a medical system that is quite old fashioned. My doctor was fine with doing an abdominal myomectomy, but is resisting doing a hysterectomy. I had to agree to try taking YAZ for a month first. But I’m extremely excited to be done with this pain and the pregnant look and the constant urination and lack of sleep. I’m scheduled for the hysterectomy for Feb 17 and would love to hear people’s experience with post-op. I am starting off with a laproscopic surgery but the doctor feels she will likely have to go abdominal because of the size of my uterus. I also have had the experience that people aren’t really taking me seriously and am so glad to have found this site. Good luck to us all!
January 29, 2009 at 2:18 pm
So I really have a question more than an experience. I am 21 years old and have been seeing a family doctor and an ob/gyn for going on 2 years now (what the hell?) and not been getting any definite answers. At some point, I started having periods that were lasting about 2 weeks. I was in a relationship and this totally ruined my sex life. When I was finally able to have sex, I didn’t really have pain, but I’d start bleeding during sex, A LOT. Not just a little bit, but like a stab victim. Then in December of 2007 I went to the ER one night because I’d woke up and couldn’t move – I was in so much pain in my abdomen. My boyfriend carried me into the ER, where I was shoved in a room and not even seen by a doctor until almost 5 hours later, when the pain had subsided. They did an internal ultrasound and said “You have multiple cysts on each ovary. There’s nothing we can do. They go away on their own time.” I was sent home with a huge hospital bill to pay off and no answers. In January 2008, I went to the gyno to see about going on Seasonale. I explained my hospital visit to her and she said everything was fine, and gave me the prescription. I was taking Seasonale for maybe 2 months when it occurred that I was bleeding every day except maybe days 2, 3 and 4 (of the start of each 4 or 5 week pack of pills). That symptom still persists even though my pill is no longer Seasonale. They keep putting me on higher and higher dosages of BC pills and telling me everything is fine. I don’t really experience much pain anymore, other than severe cramping on some days. But the bleeding is constant. Also, I have been urinating like nobody’s business. For someone who used to only go 4ish times a day, going every hour is really irritating.
I’m really worried and not sure what I should think. My current gyno clearly has no clue, but when I’m reading about things like fibroids and ovarian cancer, I tend to be very concerned. She’s never even mentioned any of these things.
Can someone give me a personal opinion? Does this sound like an issue that *could* potentially be fibroids?
January 30, 2009 at 12:02 pm
Hi Courtney,
To me it sounds like it could be fibroids. As I am sure you have read online, they can grow in different spots. They can put pressure on the bladder, they can cause severe bleeding, et cetera. Also, it is possible to have more than one problem at once — that is, you might have cysts AND a fibroid or two or three, or cysts AND endometriosis. You need to go have another ultrasound done to see what is going on. You are going to have to be really insistent that they check everything because clearly your symptoms are disrupting your life. I was amazed how long it took for my doctors to consider my heavy bleeding to be anything other than “stress.” There were right insofar as it was stressful to be bleeding so much! : )
Good luck!
March 17, 2009 at 6:13 pm
Hello,
I have a huge intramural fibroid (19cm) that pushes everything inside upwards. I experience a feeling of a tightness around my ribcage. When I take a breath in, I feel a band around my ribs expands. Has anybody ever experienced anything like that.
I had an x-ray done and my lungs are ok.
I would be grateful for any reply. Thank you.
Ella
March 31, 2009 at 12:53 am
HELP!!!
I don’t really know where to post this, so if this is the wrong place, I apologize. =( I just have sooo many questions and to be honest am kind of freaking out. I found this site and am so glad because a lot of my questions were answered from reading thru this forum! However I wasn’t able to find anyone who is experiencing anything like this…hence the freaking out! I will try to keep this short and I hope someone can help.
I have endometriosis. I was diagnosed in Dec 08 when I had a diagnostic lap and ablation treatment for the endo they found. I’ll try not to go on about the endo, but I ended up having 3 lg endometriomas on my left ovary only two wks after my surgery. I started my 6 mo Lupron trtmt for the endo on Jan. 4th 09. On Feb 2nd when I went for my second shot I was in terrible pain so my gyne had me go for an ultrasound (in office) the same day. They found a cyst on my right ovary but nothing else. I have had another Lupron shot since then. About two wks ago I started to have nagging back pain and increased urination. I noticed that my abdomen is swollen and I seem to be bloated ALL the time…to the point where none of my clothes fit. At first I thought it was the dreaded weight gain that is said to be a common side effect of the Lupron (which I thought I was getting away with not having), but I was getting bigger by the day and gained 6 pounds in 6 days. During this time my back pain became very intense and seemed to be in my kidneys. It got unbearable last week and I ended up in the ER. They tested me to make sure I didn’t have a kidney infection then decided it must be kidney stones and sent me for an ultrasound and a CT Scan. They didn’t find any kidney stones but they did find a “fibroid mass.” The whole ER visit was a disaster for many reasons but I won’t go into it! Anyway, one dr. (who was horribly rude to me) shrugged off the fibroid and told me it shouldn’t be causing my pain. She actually called it a “fibroid cyst” which confused me a little cuz I thought cysts were fluid filled and fibroids were made of tissue and muscle. About 10 minutes later another dr. came in waving my CT Scan results telling me I had a large fibroid tumor in my uterus and that it was indeed the reason for my pain. He then said I needed to make an appt. with my gyne right away so they could decide what to do about it. He prescribed me some tylenol 4’s and sent me home. I already had an appt. with the Gyne for my next Lupron shot scheduled for the 1st of April and thought I could just tough it out until then. I was wrong. My pain is unreal and the pain meds aren’t even touching it…I even took some percocet that I had in the house and TWO of them aren’t even giving me any relief! I can barely walk. It is now not just in my back, but down my whole left side right down into my hip and shooting into my leg. So I decided to call my gyne today and explain the situation. The receptionist said she would let my doc know and someone would call me back. No one called back. In the meantime I have spent today and this evening doing lots of reading about fibroids and my symptoms definitely fit the bill…this is where the freaking out comes in. I am dismayed to find out that Lupron is supposed to shrink fibroids…seeing as I have been on Lurpon since January, and didn’t have the fibroid on Feb 2nd…but have managed to grow a big one since then…while on Lupron, I am seriously concerned!!! I am basically going thru drug induced menopause, and from everything I’ve read, menopause usually shrinks the fibroids…is that right? It is obviously rapidly growing and I am not producing estrogen. Can they tell if a fibroid is cancerous from an ultrasound and a CT Scan??? I am in agony with the pain and I guess I am just really emotional at the moment. I just don’t know how I am going to wait until Wednesday to get an answer. I’m terrified!
March 31, 2009 at 10:34 am
If I was you I’d get a test to find out is it is cancer right away. Blood and other tests: your doctor would know.
March 31, 2009 at 10:36 am
Does anybody experience the fibroid pratically disappear after the period, only to became just as bid after about 2 weeks and stay that way until the next period?
March 31, 2009 at 11:48 am
Hi Taylor,
I would definitely suggest seeing someone ASAP. A fibroid should not grow when you are having your estrogen suppressed. And you didn’t mention what all they did to diagnose the other problems, but they should have noticed the fibroid before if it was there if they were doing ultrasounds or MRI’s. And point three, your spidey sense is going off. Believe yourself.
Believe yourself, fight for yourself, and best of luck!
April 1, 2009 at 2:59 pm
Oh can someone help me please?
For a few months I have been having vague abdominalpains. Then for about a week I have been experiencing pelvic pain and discomfort. I feel full easily and am bloated. the pain is a general dull pain and then really random stabbing/pulling pains down each side. My period came after 4 days of this and is as heavy as usual. My last period lasted longer than normal.
I was diagnosed 3 years ago with “insignificant fibroids ” and a “fibrotic uterus”. Could they have got worse in the 3 years, enough to be causing this?
I do worry about other things, but had a rectal endoscopy two years ago for other reasons and so know all is well there.
What do you all think? Please let me know as really worrying. Can’t go to the docs for an exam until period finished!
April 8, 2009 at 3:02 am
Eltwins, I’m not a doctor, but have seen a number of women on this blog whose fibroids grew quickly while others don’t at all, and your symptoms could easily be from fibroids…. go see your doc to find out for sure. Good luck.
April 8, 2009 at 3:03 pm
I have a question. I have been diagnosed with a large fibroid on my ovary, behind my bladder. I have been training for a marathon and it will be here in 6 weeks, which is when they will make a decision on removing the fibroid. I have discomfort and struggle to controll my bladder when I am running, and have back pain. Should I still be training for this run? My doctor is not concerned with my running….
April 8, 2009 at 5:56 pm
Hi Clair,
If you can train through the symptoms, I don’t think that it is a problem. Your symptoms sound like the regular symptoms that go along with having a fibroid.
Good luck!
April 15, 2009 at 8:00 am
My doctor was doing just a normal exam with me lying on the table and him just feeling my stomach. He said it is probably a fibroid on my uterus. He ordered a ultrasound for tomorrow. I am scared to death. I am afraid it is cancer or something other than a fibroid. I really don’t have any symptoms although I have felt it myself when I lay on my back. I have had problems in the past with constipation. My periods are normal and regular. I am 45 years old. Since my dr has told me a have something. I now feel like I am having all kinds of symptoms. I am feeling bloated and constipated. I think it is my nerves. Will i find out anything at the ultrasound? I have not had a pelvic exam for many years. I am too afraid of finding something wrong. How long before I should have results. Sorry for rambling on I am just a nervous wreck.
April 15, 2009 at 9:02 am
Diana,
It took me 2 ultrasounds, 1 visit to a urologist, and a cat scan to get to the point when I got a confident diagnosis of Fibroid. I am still waiting for a definate plan of action.
A positive attitude will take you a long way. It might take a while before you get your answers. You said that you have no simptoms…. that should be your best hint that you will be OK. I think blood work is importiant, because it can tell a doctor if something is way off.
There are alot of reasons for abdominal masses other than the “c” word….. I know because that was the first thing I did, was look up all the possibilities, not just the worse case.
I am 46, and understand. Please let us know what you find out. Take care.
April 15, 2009 at 10:33 am
Thanks for your response
So if it shows up on the ultrasound tomorrow will the technician be able to tell me its a fibroid or is that against procedure. I am feeling very bloated and gassy today. I do not know if it is my nerves or maybe a fibroid
April 15, 2009 at 11:39 am
If you are lucky, they will see what they need to tomorrow. It took 2 ultrasounsd for them to understand the mass they saw was not my bladder. They thought my tumor was my bladder and that I could not empty my bladder. The ultrasounds were weeks apart, and I had to wait for doctor’s to call me (yes, it is against the rules for the technician to diagnose)
Then I had a CT scan. When the urologist got back to me (about a week later) she said it is not your bladder, but a tumor of some sort, therefore I cannot diagnose it. I expressed to her that I was very patient to this point, but I am not known for my patience, and I need some information ASAP because I am about to loose it! She was great and got me right in to my next appointment.
Then I went back to my OBGYN and she gave me her opinion (fibroid on overy pressing on bladder) and followed up with blood work to rule out anything extreem. I will go back in 6 weeks and make plans to have it removed.
So… it iook me about a month or so to get from… something “not right” to “abdominal mass” to fibroid. I would tell you to ask the technician and or your doctor how you will be notified of the results so you will know what to expect.
Hopefully yours will be easier to see and you get your answer tomorrow.
April 16, 2009 at 9:21 pm
hello
well i went for my ultrasound today and then the technician suggested I have a pelvic ultrasound (using the probe inside) They did that and I believe they did not see a fibroid but I believe i heard them say that i have a cyst on my right ovary. They had a hard time finding my left ovary. they did not tell me anything but I got a very bad feeling. I am so afraid it is cancer. I just didnt like the way they were acting. (there was two of them). I dont understand why the dr would say my uterus feels enlarged if they didnt find anything on my uterus. could my uterus be enlarged due to ovarian caner. Im sorry im such a worry wart but i cant think of anything but cancer. please help if you have any thoughts.
thanks so much
April 17, 2009 at 7:37 am
I had the exact same experience. I am not a medical professional, so I decided to educate myself. Here is a good link that comes up by simply “googling” the words “ovarian cyst” :
http://www.womenshealth.gov/FAQ/ovarian-cysts.cfm
If you look into the information online with an open mind, you will find that there are lots of reasons for abdominal masses. I think an ovarian cyst is not an uncommon thing, and does not necessarily leap to the conclusion of cancer. There are blood test they can do if they are concerned, or just to be safe. Your doctor will decide if this is needed.
And as far as the doctor not knowing what they were feeling from your physical exam, if you remember, it took 2 doctors 6 weeks in my case to figure out that my ovarian cyst was not my bladder. I don’t think it is unusual to take a while to figure things out.
I understand your concern, and wish you all the best. I think too much worrying does not fix anything, and in fact can make you sicker, so if you can channel some of that energy into learning more about what you can do, and what to expect, I think it would make you feel better.
Best wishes and take care,
April 17, 2009 at 8:09 am
Thank you so much for your response. May i ask what your symptoms were? I have no pain but I do have fullness in my pelvic area and constipation and you can feel the lump when i lay on my back. Thank you so much for listening to me. It really does help. I will try to stay positive. I think I would feel better if I didn’t get the bad feelings from the technician. I know her and i thought she was acting very strange. I asked her if she saw any fibroids and she said no she thought it was my ovaries. I asked her if she thoght they looked cancerous and she said she could’t tell by looking at them.
thanks again
diana
April 17, 2009 at 9:50 am
After I was told two years ago that I had fibroids anda “Fibrotic” womb, I have being having more pain lately and bloatedness and bowel symptoms etc. Had anotehr ultrasound and they have said that there are no fibroids! I understood that they could not just disappear.
But they did find two cysts on my left ovary and one on the right. Now I am concerned that all my symptoms that go back two years have been due to ovaries and that it could be cancer.
I have two go back in two weeks to have another ultrasound to see if the systs are still there. Meanwhile my period is coming around again and it is all flaring up again. If it was cancer would it hurt constantly and not go away between my periods?
April 17, 2009 at 2:48 pm
Hey
i just called my doctor to tell them that i was going to be out of town all next week and please call my cell phone when they got the results from my ultrasound. She told me they did get the results and it is only showing cysts and nothing to worry about. They did not get the results of my mammogram but that wasn’t the test i was stressing about. I did not ask them why my uterus is enlarged ( the reason I had the test in the first place) I figured i will do that when i get back. thanks for listening
April 17, 2009 at 2:57 pm
Wow…. I am glad to hear it! Thanks for sharing the good as well as the bad. Sounds like you can realx now… I am happy for you.
Funny thing, you actually have to ask the questions…. seems like they would be calling you right away, but they don’t.
Take care,
Claire
April 28, 2009 at 5:11 am
Hello all, I’ve read all your comments and its is nice to know I am not alone, doesn’t help, but still nice to know. I started writing my experiences/advice/suggestions but it was turning into a novel and perhaps not relevant to post here. If I knew how I’d start up a home page, but what’cha gunna do?! I’m 38 and since the age of 11 have had the following…oh, and pain requiring regular (almost monthly) hospitalisation as well. Have had 3 laparoscopy/hysteroscopy (the most recent a month ago), endometriosis, uterine fibroids, overian cysts, pain from scar tissue, MRI’s, internal ultrasounds. I knew nothing of these things until I was diagnosed at 25 but how things change. If you are overwhelmed and don’t know how to proceed with treatment, surgery, anything relevant feel free to drop me an email. In no way do I have all the answers but maybe I can help inform those who are unsure, like I wish someone had done for me all those years ago. studio20one@live.com.au I live in Melbourne, Australia, so do my doctors. Happy to share my story of my treatments, diagnosis, what shows up on an MRI that doesn’t on an ultrasound…I only learnt that lesson last week.
Best of health girls. Nikki
April 29, 2009 at 1:52 pm
I just returned to get my ultrasound after almost a year now only to find out …The UFE I had only shrinked the fibroids just a little bit after all the pain that I went through. I can’t believe it I must have missed something in finding out about this procedure. Does anyone know what I do now? Please anything….Thanks Angel
May 2, 2009 at 11:14 am
Nikki, we’ve been talking about all the things you mentioned one place or another on this blog! So look around at the other threads on this blog and please post what you’ve learned under the appropriate ones. Everyone’s experience is really helpful and it would be great for you to tell us what happened to you here. Also, since this blog is read around the world you’ll also reach a lot of women who aren’t comfortable writing in English so they wouldn’t even try to contact you, in addition to others who are to shy, too private, etc. Best!
May 23, 2009 at 3:55 am
TaylorMac and Raffaella`s posts really struck a chord with me-when you see your own symptoms described by someone else you think that maybe you`re not going mad after all (or at least,not alone!)
For the past few years clotting at period time has become nothing unusual,mid-cycle pain in the right ovary area likewise,no big deal.
However, since Sept `08 the pain has become WAY MORE severe-incorporating back pain as well as a pain that goes down into the top of the leg.
Trying to describe this pain is tough-when you mention that it is contained within the general area of the hip,a Chiro or Physio is suggested…..NO…..it is not a mechanical problem,it is a deep,deep pain that I can only liken to a labour pain.It may last only a few hours,it may hang arou