This is a decision that a number of my visitors are facing so I’m looking for hysterectomy experiences. The topic will be broad for now. Once comments are posted, I’ll create new questions when necessary (e.g. post-op recovery for specific surgeries). I’ll include a couple of links with more information and then open the floor.
According to womenshealth.gov (The National Women’s Health Information Center):
A hysterectomy is the second most common surgery among women in the United States. (The most common is cesarean section delivery.) Each year, more than 600,000 are done. One in three women in the United States has had a hysterectomy by age 60.
More hysterectomies are done because of fibroids than any other problem of the uterus.
Sites with more information:
Medline Plus – Hysterectomy (provides links to additional resources)
MayoClinic.com – Uterine Fibroid Decision Guide (includes extent of hysterectomy surgery, what to expect, common concerns, and pros and cons)
The Journal of the American Medical Association Patient Page on Hysterectomy
Uterine Fibroids and Hysterectomy (Thanks for the link fibroid free!)
Surgical Video:
da Vinci® Minimally Invasive Robotic Hysterectomy
Laparoscopic Supracervical Hysterectomy
Please leave a comment if you have a hysterectomy experience to share (does not have to be fibroid-related) or thoughts, questions, or concerns.
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Related Posts:
How are you feeling after your Abdominal Hysterectomy?
How are you feeling after your Laparoscopic Hysterectomy?
OR-Live brings fibroid surgery video to your computer via medical webcasts
How are you preparing for your fibroid treatment?
What should I carry with me to the hospital before my fibroid surgery?
Muffin top after abdominal surgery? What’s a muffin top and how do I just make it go away?
Are you healing your spirit and mind as well as your body after your fibroid procedure?
October 24, 2006 at 4:39 pm
Hi,
I don’t have fibriods, but I have had a hysterectomy, though I don’t think my experience would actually be really very useful. I had a perfectly healthy uterus removed when I was 23 via a total laproscopic approach – I think it would be impossible to have that if you had fibriods. It was just growing in me and I was a bloke, so that was a problem. Not much of a problem but a problem. I hope this isn’t rude, and I’m sharing this info because it might be useful.
Here in the UK you don’t normally get much choice about which doctor you go and see – but I was a med student my OB/GYN tutor was bragging about how good his laproscopic hysterectomies were – so I took him to one side – explained the situation.He was great and asked me to assist in one or two before I made my mind up. I had the surgery just after I graduated as a Doctor.
The actual surgery was fine – I went in the day before, had an injection of enoxyparin (Clexane) which is a Low Molecular weight heparin.Then I went back on the day of surgery and had the operation. I told my girlfriend it would take about 4 hours but I was back in the ward in an hour and a half – any my girlfriend was still shopping in town! She got a bit of a shock when I called her.
After the operation I was on a drip and had a cathether in – which was a bit weird. – but there was virtually no pain at all. As it was laproscopic my belly was all blown up and I felt really bloated. – I also got some pain in my shoulder – which is because the diaphagm is supplied by the same nerve root as the shoulder, so diaphagmatic pain refers to the shoulder.
I asked the anaestist not to give me morphine during the operation because it made me really drowsey and sick after my bilateral masectomy. She told me that masectomies cause more nausea than uterine surgery. I wanted a spinal but the anaestist looked at me as if I was weird and said ‘don’t be silly a general anaesthetic is far better’ I later learnt that she wasn’t very good at spinals. I was a bit disapointed because it was my one chance to look at my own insides which would have been cool.
When I woke up I felt fine – I didn’t feel nauseous but I did feel drowsey – I remeber being able to understand the talk radio but not able to read my book. Tip – don’t bring a complex book, – bring something easy to read. For some stupid reason I’d taken ‘War and Peace’ – yes seriously – I thought it might be useful if my operation was cancelled, but it was far too complex post op.
I knew I had to show the nurses I was passing urine before they took the catheter out – so I cheated by drinking four cans of RedBull – a very high caffine drink – some expressos should do the trick. I then passed loads of urine into the catheter, but then I was wide awake due to the caffiene, and bored still not able to read though. The nurses thought it was funny when I borrowed a pen to fill in my own fluid intake chart. Once the cathether was out which felt a bit stinging I managed to persuade them to take the drip down because I was drinking enough – if they’d been intra operative blood loss it should have stayed up. By this point the nurses on a gyne ward were a bit confused with having a bored male doctor as a patient. I was discharged at about 5pm. Still not having taken a painkiller – because I wanted to see what I would feel like without them.
The next day – once the ‘wow I’ve had my uterus out – this is sooo cooll’ had worn off. I didn’t feel so good. I was tired, and bored, still too tired to read anything interesting and it was starting to hurt.Not hurt big time – but ache. So we tried to have sex to cheer my up -(did I mention my girlfriend is fab?)
Also orgsams felt different which waas really annoying – they used to be a feeling I got inside of me – now they’re a feeling I get on the outside – their still fun – but different. My Surgeon said some women would find orgasms different because some women have orgasms from the cervix and when that’s removed it’s different. I didn’t have cervical orgasms but it still felt diffrent. Perhaps being 1 day post op had something to do with it. They feel a bit different now – but I’ve got used to them being different and I figure they’re more ‘male’ now.
There were three wounds where they keyholes had gone in – and they were covered by dressings – they weren’t that sore but one of the oozed a bit. At first I was worried to shower – and had to go to the chemist to buy some replacement dressings ask to buy the indivudally they’re a lot cheaper than in packs. Then I discovered something really cool – although the material of the dressing wasn’t waterproof the gum is totally waterproof. Soon later I was able to go swimming with them on, which was at the time cool.
Getting my energy and thinking ability back took about 3 days post surgery – I had my surgery on teh Friday and was going to go back to work on the Wednesday afterwards but the G/F perusaded me to go back on the Thursday – in retrospect it was the right descion because I wasn’t quite 100% on the Wednesday. She did take me out though for a walk in the country because by then I was going mad with bordom.
Went back to work on the Thursday which was fine – no problems, until I stupidly decided to go swimming on the Friday a week after my operation – hummm. Why do I insist on doing things myself that I tell patients not to do?
Anyway that was fine but right after I noticed a small painful lump on one of my wounds that came out when I coughed – a hernia. Fortunately I was able to push it back in and it stayed there.
The other weird thing I noticed post op – was that I was a lot more stable emotionally – before if my testosterone levels were slightly low then I would get PMT like symptoms now I’m far more on the even keen – sort of flattened out. Again I like that because I felt getting over emotional at times was a bit ‘female’ but if you’re female it might be annoying.
October 24, 2006 at 4:48 pm
Sorry about that – my computer programme crashed half way through so I posted again – *D’oh* Please delete one.
October 29, 2006 at 2:58 pm
Your computer crashed just as the Akismet catcher went crazy and marked EVERYBODY’S comments as spam so I think the duplicate post was the result of some weird cross-dimensional rip or maybe just computers acting up. All should be fine now on this end.
Thanks for responding to this post so quickly. I was looking for any hysterectomy experience and I appreciate that you felt comfortable enough here to share. I’ve included an excerpt from your comment and a link back in the post-Laparoscopic Hysterectomy thread (I call them threads because I have a bit of a forum here). Didn’t consider anything you posted to be rude but this comes from a woman who writes about her “bloody” periods. At a later date, I’ll just debate you some on the estrogen vs. emotional stability question (maybe in the post on your blog about gender roles).
Thanks again for posting the details and for the perspective from both sides of the knife. Of course, the geek in me finds that cool.
October 29, 2006 at 3:28 pm
Feel free to debate
I’d be interested to here what you say: and it would be great to see more people other than my friends posting here 
The day of my surgery this was published in the BMJ, which is a meta analysis saying that: Basically
Laprscopic and vaginal were the same in terms of pain but there was more risk of injury to urter and bowel with Laproscopic, there was more pain from the abdominal route, but it was safer. If it had been published before my surgery I think the sensible thing would have been to have gone ahead with abdominal route, but I knew that I couldn’t take longer than a week off work for surgery so it would have to be laproscopic with fingers crossed.
[Methods of hysterectomy: systematic review and meta-analysis of randomised controlled trials]
[Edited by EclecticGeek to shorten link. Is it just my crazy computer that makes long links look weird?]
October 31, 2006 at 5:34 pm
I am 41 and have fibroids that are as large as 18 cm. I’ve seen just about every doctor that offers alternatives and I’ve decided to have an abdominal hysterectomy. My surgery is scheduled for 10/11/06. I will gladly keep you posted on my experience.
October 31, 2006 at 10:33 pm
hi do you want to have a hysterectomy? If you don’t there are dr who can handle a myomectomy so you can keep your uterus. i am 43 and recently had 5 fibroids removed (some very large) and was able to keep my uterus. Myomectomy is a very specialized surgery. you do have a choice….
November 1, 2006 at 7:11 pm
Z:
Thanks for feeding my “journal article” craving. Anxious to fit it into my schedule so I can read it! Will definitely come a-visiting to your blog when I get a chance. Still trying to catch up with comments here but I’ll be there soon.
cashcan2:
I really appreciate your offer. I’ll start a “How are you feeling after your Abdominal Hysterectomy?” thread if you feel up to it after your surgery. Best wishes to you.
November 2, 2006 at 9:16 am
Hope you find it useful. Or at least interesting.
November 10, 2006 at 10:01 pm
I had a hysterectomy and oophorectomy (removal of the ovaries) and it was, without doubt, the WORST decision I ever made in my life. Although I hesitate to call it my “decision” because the information I was given prior to surgery was anything but informative. (Which I now know to be all too common practice among gynecologist.)
I have had so many post-op complications and problems that I could write a book. But that would be a waste of time because others HAVE written books about this- the problem is that I wasn’t aware of them until after surgery. Had I been, or done any kind of research, like you are, I would have known NOT to have a hysterectomy!
Without going into the details, here’s a partial list of problems I’ve had since surgery: First of all the absolute worst is the loss of my sex life. No more orgasms, shortened vagina, no libido, atrophied vagina, nerve damage … I could go on, but will stop there. The list continues with: Rectocele (I often have to manually remove stool now), bladder problems, insomnia, dry eyes, skin change, hair loss, digestive problems, TIA’s, vision change, heart problems, tooth loss, osteoporosis, weight gain, loss of energy, impaired memory, cognitive problems, significant changes in maternal feelings, empathy, bonding, desire and other emotions . . . and more. MOST of these problems are from losing my ovaries, which I now know are endocrine organs and, as such, place a significant role in other body functions and overall health. NO ONE told me this prior to surgery and the whole “hormone thing” wasn’t even mentioned by my doctor before surgery.
NOW I know that hormones are incredibly important for our health. NOW I know that not every woman can tolerate artificial hormones and that if you are one of these women and you lose your ovaries, you are screwed. NOW I know that “keeping” your ovaries when having a hysterectomy does NOT mean they will keep working. As a matter of fact, women who “keep” their ovaries are more likely than not to experience ovarian failure within 2 years.
NOW I know that the gynecologist pass you on to other doctors (like urologist, neurologist, cardiologist, rheumatologist, gastrointerologist, opthalmologist, dermatologist, endocrinologist, internist, dentist, etc. etc.) when you have problems following hysterectomy because they have already removed the body parts that they specialize in!
BEFORE surgery, I thought that complications among hysterectomized women was “rare.” I think I based this on the fact that hysterectomies are “common” and considered “safe.” NOW I know that what has happened to me, and millions of other women, is not “rare.” Post hysterectomy complaints and problems are much more common than the public is aware of. It’s just that the problems they create are extremely personal and embarrassing and most women cannot discuss these details with even their closest friends.
NOW I know that the hormones the ovaries AND the uterus (yes uterus) produce involve more than just estrogen and that they are major factors in feelings of love, empathy, joy, happiness, bonding and maternal feelings. No one told me this before. No one told me that gynecologist prescribe over 75% of the antidepressants prescribed in this country either. That might have been a clue had I been aware enough to understand it’s meaning before my surgery.
Before surgery, I didn’t know that the divorce rate for hysterectomized women is higher than others. (Neither the husbands or the wives understand the changes in the women.) Nor did I know that removing my ovaries would make me, a single woman, undesirable to men on a level that they themselves are not even aware of. I didn’t know that I would be giving up my pheromones, and the other “chemistry” that is at the root of all sexual attraction.
To any woman who is considering hysterectomy, I would say that unless you are in a life threatening situation (fibroids are NOT in this category) that you should make sure that you have done all the research you possibly can and try all other options before resorting to a life-altering, irreversible, major surgery like hysterectomy.
I wish I had read “The Hysterectomy Hoax” by Dr. Stanley West; “Misinformed Consent” by Lise Cloutier-Steele; “Your Guide to Hysterectomy, Ovary Removal & Hormone Replacement” by Elizabeth Plourde or “Hysterectomy: Before & After” by Winnifred B. Cutler, BEFORE I made the “decision” to have this surgery. I wish I had gone to the HERS Foundation website, or Sans Uteri, or a site like this before I let myself be blindly led down the path into this nightmare of post-hysterectomy life.
November 11, 2006 at 12:52 pm
Lucille,
I am sorry you continue to struggle with major problems after your hysterectomy. It is major surgery and will always carry a risk of post-op complications. Hope you are able to find the appropriate specialists to help you with these life-changing health issues.
I appreciate you sharing so much. Your story reinforces the importance of being an informed patient. That’s why I started this site. I want women to know about all treatment options. If a woman has a question, I do my best to answer it myself, find a good resource with more information, and/or set up a post where women with experiences can discuss it.
Fibroids are benign (noncancerous) but can be life-threatening. They lead to such conditions such as deep vein thrombosis and severe anemia. Also, the fibroids tragically diminish the quality of life of many women. This is where one must weigh the risk vs. benefit of any treatment. For some women, hysterectomy is the ONLY option for fibroids. Not every place in the world (or even in the US) has the same available options. Also, years ago, it WAS the only option. In this case, I am thinking of one of my family members who had a hysterectomy probably 50 years ago for her fibroids. She is now in her 90s and I cherish her to this day. For some women, hysterectomy is the best option for fibroids. They have made an informed decision and picked hysterectomy.
You can best believe if hysterectomy was the best option available to me for my fibroids, EclecticGeek would today be “sans uterus”. There was no way I was going to continue to live the hell my life had become with the fibroids in command. I was so anemic that I spent just about all day every day on my couch. I felt faint constantly. I couldn’t go anywhere or do anything not only because I was just that weak but couldn’t take the chance of a flooding event out in public. Doctors were encouraging me to go to the ER for blood transfusions. I FEARED my periods. I actually lived in fear. After being raised to fear no man, I was afraid of me and my own body. So yes, to end that nightmare, I researched my treatment options thoroughly and picked the one that was best for me. An informed, empowered medical decision.
Once again, I am truly sorry you are dealing with such major health issues and I hope you are able to get the help you need. I thank you for being so honest with your experience, contributing another perspective, and reminding women that they MUST know more about their own bodies. It is the only way to make good health choices.
If you have more you wish to say at any time, please know you are welcome here.
November 11, 2006 at 9:30 pm
Thean you so much for creating this site to help educate women about reproductive organ problems. I am the author of the book mentioned in Lucille’s message called: Your Guide to Hysterecotmy, Ovary Removal, and Hormone Replacement. My husband and I are researchers in this field and also manage the Website: Sans-uteri which is a forum for hysterectomized women to share and help each other with their post-hysterectomy problems. Whatever we can do to assist you with this Website we would be glad to do.
Also, are you familiar with Carla Dione and NUFF – National Uterine Fibroid Foundation? She has a lot of information on fibroids available.
November 12, 2006 at 1:22 am
Lucille,
I’m so sorry you’ve had to go through so much with your hysterectomy. Your story terrifies me, I have to be honest. It amazes me that these are potential consequences of major surgery and no one mentions them! It also amazes me that 1/3 of American women are going to have a major organ removed by the time they reach 60.
That said I know more than a couple of women who had hysterectomies and are very happy about them, and encouraged me to have one “so then you wouldn’t have to worry about anything”. I don’t have the heart to tell them all the potential consequences they escaped.
So I have to ask this question: Can you imagine if 1/3 of Americans (of either gender) were losing an eye by age 60? Not eyesight, but an actual eye? Would this be accepted?
November 12, 2006 at 6:01 pm
Elizabeth Plourde:
When I needed to pick a fibroid treatment, I spent several months on the Internet looking for credible web resources. I’ve listed what I discovered on the Links page. Specifically, I was searching for a science-based site from the perspective of someone dealing with fibroids. Unfortunately, I was unable to find one and decided to start my own.
I am extremely happy that my blog has developed into a community of support. It is very important for women to hear from others but my main mission has not deviated. I will always push to discover more about the true science, medicine, and research behind the issue of fibroids and present my findings to those who are interested. Thank you for your visit.
Julia:
It is my hope that as more women become educated about all treatment options, they will understand more clearly what option is best for them.
November 13, 2006 at 2:46 am
Julia:
You are right, it is amazing! I probably wouldn’t believe it either if I hadn’t had to live the experience myself. Because of my own experience, and wondering what made me different from all those “happy hysterectomy” women the doctors told me about, I’ve done a lot of research on the subject. (Somewhere between 5-6000 hours.)
In the last 5 yrs. I’ve talked to hundreds of women about their hysterectomy experience and of course, have heard quite a few say it was “the best thing that ever happened to them.” THEN, as we talk more and I begin to ask questions about their overall health, they tell me about all their “other” health problems that are not (in their minds) related to the surgery. However, knowing what I know now, I believe that in all likelihood, they are, indeed, most probably related to their surgery.
What women don’t realize is that it’s possible to feel “terrific” for months, even years, after the surgery but still suffer very serious long-term side effects. For example- osteoporosis- just to name one side effect: If you ask most people, “Who is effected by osteoporosis and what are the consequences?” you will most likely get vague, inaccurate answers, which highlights the lack of public understanding on this horrible disease.
Most women, when they read in their little pamphlet that the ACOG puts out, that there is an “increased risk” of osteoporosis with hysterectomy do not really understand what this means. In their minds, it’s a small risk that is projected “far away,” into their “old age.” They hear the words but they don’t really understand the implications. When you explain to women that osteoporosis can strike them within weeks of oophorectomy or hysterectomy (as opposed to decades), they are usually quite surprised!
Everyone has heard of “hip fractures” in the elderly, but how many know that more Americans die each year from complications of hip fractures than die from auto accidents? Or that 1 out of 4 patients who were independent before a hip fracture will require long-term care after? Or that a woman’s risk of hip fracture from osteoporosis is MORE than the COMBINED risk of breast, uterine or ovarian cancer?
How many women are aware that along with the risks of debilitating hip fractures, osteoporosis also brings a big risk of losing their teeth? Again, this not a risk that necessarily correlates to a woman’s age- it’s not projected into her 70’s or 80’s- it is a real risk that can develop, at any age within months of hysterectomy or oophorectomy!
How many women know that spinal fractures are a common result of osteoporosis? When considering a hysterectomy, rarely are women warned about the risk of back pain following surgery, yet it is a common side effect. However, we must realize that a lack of back pain during the first few years following surgery doesn’t mean a woman has escaped osteoporosis. . . Osteoporosis is often called the “silent disease” because women may not know they have it until a vertebrae collapses or a wrist fractures or a hip breaks while doing something routine. Even then, it is usually not associated with her previous hysterectomy or oophorectomy because not only is the public unaware of the connections, but so are many of the doctors who treat the women in their subsequent, post-hysterectomy years.
This just one example of how the negative side effects of hysterectomy are commonly overlooked. “Buyer Beware” because the whole list is very long, indeed!
November 13, 2006 at 11:03 am
Lucille,
I am most interested in your body of work (5-6000 hours). Anecdotal experiences from different perspectives are great. That is why your PERSONAL experience was helpful. If you have information/studies/surveys involving other women, please let me know how to view your research through PubMed or Google Scholar literature searches.
Thank you.
November 14, 2006 at 11:39 am
I am so sorry to hear of Lucille’s bad experience with hysterectomy. My comments here are in no way meant to minimize her troubles and concerns. Honest!
However, when faced with my own need to make a decision regarding hysterectomy, I did not feel that there was a shortage of information about the negative consequences of hysterectomy. I also got antictodal stories from women who were just happy to be rid of their monthly troubes. Quite a few of those stories were quite flip, as a matter of fact. But as with anything else in life, there are two sides to the story, and, most of the time, the “truth” lies somewhere in between.
My journey has taken 15 years. I was first diagnosed with fibroid tumors at 33 when heavy bleeding and extremely painful periods took over my life. I couldn’t predict or control when or where I would literally dump blood on the street. After 3 long years of putting up with it, I finally had a myomectomy. That worked for about 10 years, but i didn’t make it to menopause before the tumors returned with a vengeance.
This time, I didn’t wait so long to make a move…yet it still atook whole year and a half for me to make a final decision. Why? Partly because of how much NEGATIVE information I did find on the internet. If there are doctors in the world that are quick to rush you to surgery, there is now, in my opinion, also too much bad publicity about the procedure. I was ,quite literally , bleeding to death. The overwhelming message I got from my research was pretty much all about how hysterectomy is generally unnecessary and done too often. By the time I finally got past all the negative news and had the surgery, I was severely anemic and unemployable. I was hemoraging heavily all the time. Drugs didn’t stop the bleeding. Myomectomy, ablation….no long options. I NEEDED a hysterectomy.
Yes, all surgery is risky and carries the possibility of side effects. But that doesn’t mean it shouldn’t be done. Every woman should be informed, but I feel like I was TOO informed of the negative. It made me avoid this surgery and risk my life. Our bodies are going to break down here and there. We just need to be informed, make good choices, and deal with it as it comes. I don’t expect that I won’t face side effects of this surgery. But it’s better than not being around at all…
November 15, 2006 at 4:30 pm
April,
I took your comment in the spirit it was intended.
I also think there is too much negative information on the Internet. I personally ran across this when looking for information on Lupron. I lived in enough fear with my symptoms from the fibroids. I refused to live in fear with the treatment options. So, I purposely AVOIDED any site that promoted fear.
It’s important to hear from all sides. I’m happy that women are willing to share their experiences (the good, the bad, and the ugly) here. This is a great way to inform. I draw the line when that experience creates panic. Nothing angers me more than one woman feeding off the hysteria of another. Plenty of sites out there doing that. I’ll not have it here. Fear increases darkness. Good information is light.
I appreciate your comment. So much so that I must quote you:
Well said.
December 11, 2006 at 7:31 pm
I can sympathise greatly with Lucille, if it is any consolation she is not alone, certain things will improve and we can all spread our knowledge – hopefully to those who have yet to make a choice.
After being diagnosed with a 10cm fibroid following ultrasound, I was given a possible 6-8 week wait for surgery. The consultant advised that the size of fibroid was too large to remove any other way than by incision, and recommended full hysterectomy including cervix. After questioning him about keeping one or both ovaries he said that as I would be reaching natural menopause in 2-4 years anyway it is better to take them both out. There was a very small possible cancer reading on one ovarian cyst. This was a false reading but during the operation another benign cyst was found along with ’severe endometriosis’. I accept that due to the state of my internal organs (everything was glued together) it was probably necessary for a full hyst. As the fibroids were pushing my bladder forward I was in constant pain, visitng the loo every hour for several months and unable to sleep, lie comfortably or move around easily. I opted for private treatment at great personal expense as I was in so much discomfort, and surprisingly wish I hadn’t. (Bank nurses with no interest or knowledge of my condition made my post op stay unbearable. ) What I feel sorry about is the number of women who are not given clear regular explanations about their post op changes during the first 6 months following surgery. It is a very frightening time, and not one which lends itself to searching on the internet for answers.
I have also spent hours on the internet learning about all the things that make sense of what I now find myself experiencing having had no aftercare or referral offered. I have at last found a specialist who can hopefully answer my latest worries – found through ‘womens health concern’ website.
Like many others, I have informed myself, found out about choices too late, and had to deal with it on my own. The ‘womens health concern ‘ is a well informed group that I recommend as a first point of call for anyone who needs advice. I believe it is a voluntary organisation which I aim to support in the future. I just wish I had found it sooner!!
December 20, 2006 at 10:06 am
Hi jilly,
I’m sorry you had to deal with so much. I cannot imagine having fibroids plus other conditions. It’s a shame you felt so alone post-surgery. It’s rough to have to search online for answers after going through something that was supposed to help. I’m glad you were able to find a group for advice!
Thanks for taking the time to share your experience here. Best wishes with the specialist and your recovery.
January 19, 2007 at 8:48 pm
Hi,
Perhaps I’m late… but I’m 11 days out from a LSH with LSO. I feel terrific. Yes, I do feel like Somthing Happened in my belly… but the swelling was minimal and is now nearly normal; I can sit up easily, walk easily, do stairs easily… I’m avoiding lifting, pushing or pulling more than 10 lbs. I haven’t needed more than ibuprofen since day 3, and now only take it at night. I do tire a bit more easily; but the hardest part is remembering that this was major surgery, and not to overdo things.
I had painful fibroids and an ovarian cyst that suggested an endometrioma. I’m 49, and it was best to remove the ovary with the cyst. The surgeons also found a lot of endometriosis once they got in; I see my doctor in 5 days for my post-op so we’ll discuss this situation thoroughly then.
The hospital experience was a dull blur: 28 hour or so stay; well attended by nurses and aides, comfortable, in little pain, in a private room. 24 hours post-op the catheter was removed, I could pee easily, and walked the corridors — a little shaky, but basically fine.
If this was having major surgery, then it’s the way to go. I am lucky I was a candidate for the procedure, and it didn’t hurt that I am in good health and reasonably (but by no means athletically) fit. It can be a very, very positive option for a hysterectomy.
January 28, 2007 at 3:36 pm
Hello! I’m looking very forward to having surgery (p’in and not wearing pads; poop’in correctly after years; and feel great about a hysteroctomy). Surgery includes rectocele, bladder sling, cervix repair, vaginal repair. Done abdonimally to last longer and the advantages is lower incidence of damage to the urinary tract and blood vessels. I wanted hysteroctomy at same time – while you’re there. I do feel informed but had to search internet all weekend and yes, find negative aspects (few positive). Everyone that I have talked to are very glad that they got their hysteroctomy (some don’t know why they didn’t do it sooner).
Few questions found while ’surfing’ (I’m 47 years old):
Will not having the uterus cause the vagina to fall?
Will the hystorectomy cause the rectocele and bladder sling to come un-done cause it’s being repaired at the same time?
How much calcium tablets (besides chocolate/strawberry milk and cheeses) should one take in helping to prevent osteoporosis?
Oh and the limitations and bending and such bring to mind another question. I had one person tell me it was easy to get up and down from bed in hospital (bed goes up and down) and harder when they got home. Have a craftmatic twin (like hosp bed). Should I have it put up for the first four weeks or so in order that i’m not ’straining’ my incision or my repairs?
Thank you for any information you (and readers) can (would like to) provide (share).
January 28, 2007 at 8:19 pm
and I should add to my comment above, that I also look forward to adding an extra 2 and a half weeks in which I am able to have sex.
January 29, 2007 at 7:05 pm
celeste:
No, you aren’t late at all.
Thanks for sharing your experience. I’m happy to hear your recovery is going so well. Here is another place you can add comments if you like:
How are you feeling after your Laparoscopic Hysterectomy?
Please keep us updated and best wishes!
Luci:
Yes, the Internet by its very nature tends to draw negativity sometimes. Although I am interested in hearing experiences from all different perspectives, I won’t tolerate the bitterness and fear mongering I have seen on some other online sites.
I don’t have direct experience but you can check here:
How are feeling after your Abdominal Hysterectomy?
I’ll also include these two. I know the surgeries are different but perhaps you can get information from those recovery experiences (esp. moving around) as well:
How are you feeling after your Laparoscopic Hysterectomy?
How are you feeling after your Abdominal Myomectomy?
As far as the second comment you posted, I am smiling for you.
January 31, 2007 at 10:02 am
WOW!!!! so many different ways that people have experienced their hysterectomy. I ha dan abdominal hysterectomy on 15days ago so I’m at the early stages of recovery . I am praying that I don’t have complications. Tha only thing that is really hard for me is the wind pain at the moment ..SO BAD!!
I can’t wait to have sex again so I don’t think my libido has been affected as yet but I’m in the very early stages of recovery.
My relationship is strong with my husband he has seen and been through alot in the last 8 yrs with me concerning this whole process.
We are both still young I’m 34 and Mike is 38 we have our 4 beautiful children so I’m blessed. They are my little miracles. I am happy that , that part of my life is over and now ( well eventually) walk around in no pain.
I don’t have to worry about being public and getting my period and worrying that I’m going to flood (actually downpour) infact I can now walk around with absolutely NO underwear , a new found freedom!!! I will remain positive about the whole process . I have suurounded myself with people who are positive , supportive, caring and generous.
All negative people I have cut out of my life, which I know is a great choice.
I am searching out people who have had hysterectomy with positive results , so it’s great to find some blogs that I can contribute too , Kelly
January 31, 2007 at 4:29 pm
I had my SAH on 1/23 at 8am. I was not stressed going into the surgery. I think it was because I read so much info about what was going to happen. I felt somewhat in control of the situation. I did not have to do any pre-opt prep with my bowels. I only had to stop eating and drinking at midnight.
I informed the anesthesiologist that I had never been anesthetized. I also emphasized that I get motion and altitude sickness and have a huge phobia of items in my throat. The anesthesiologist said I was in a high risk group of getting nausea but she would take extra measures to help me. She also promised to remove the tube from my throat while I was too sleepy to remember. I’m happy to report I had no nausea and do not remember the tube in my throat. I do remember going into the OR and asking which radio station they listen to during surgery–they answered “Bob” (which is my favorite station.) The entire team in the OR were women–how great was that! The surgery took around 50 minutes.
My next memory was waking up in recovery. I had a oxygen mask on. I heard the nurse talking to a doctor about why I had not produced any urine. I wanted to answer that I had nothing to drink for 12 hours but I could not talk. They heated my IV fluid and pumped it quickly into me. I thought the foley would bother me but I didn’t feel it.
I was put on a Morphine pump and told to press the button every 10 minutes as needed. I was also given ice chips to eat for the rest of the day. At 3:30 pm I started having issues with low blood pressure. It dropped to 88/44. The RN called my doctor and was told to check my blood pressure every five minutes. It would jump up to 99/58 then drop down again. My doctor talked to me on the phone and assured me that since my baseline blood pressure is already low at 116/70, due to being a runner, that the drop is a normal occurrence while taking narcotics. She said it happened to her four months ago when she had her twins. She is a marathon runner.
The RN suggested that I try to walk and I could not figure out the logistics of this task. I had to deal with the foley, IV, and Morphine. The RN then said I needed to start sleeping a little on each side. He gave a plastic tube to exercise my chest to prevent pneumonia and put an wrap around my legs that inflated every few minutes to prevent clots.
Day 1 after surgery began with some sharp gas pains on the right side of my chest. The gas pain was relentless. Sitting up helped a bit. I tried walking to get rid of the gas but I almost passed out after my blood pressure dropped again. I tried to breath deep to break up the bubbles but my chest felt very swollen by the end of the day.
The foley came out in the morning. The RN’s had me urinate into a “hat” to keep track of the amount. I filled up the hat 6 times. I was on a clear liquid diet. I brought in all my own food and drinks for my recovery. I drank green tea with honey, cranberry juice, miso soup, and after I passed gas mid-day I had soy pudding and apple sauce.
Day 2 after surgery began with intense pain. My night nurse did not give me any pain killers and…..it hurt. I had a hard time getting out of bed and I struggled to the bathroom. The nurse finally gave me some medicine and I felt better. I was released at 3pm and was happy to be going home. That night I found it hard to sleep. It was hard to get into my bed, laying flat hurt, and I had two panic attacks which woke me up.
Day 3 day after surgery I weighed myself . I’m three pounds heavier than the day of surgery. I guess the swelling adds weight. I’ve not been that hungry. I was determined to have a BM today so I quickly drank a can of prune juice followed by some applesauce. I hate the taste of prunes. A few hours later I did have a BM with no trouble. I did notice that my bowel muscles felt weaker. I’ve had very little bleeding but I noticed a some numbness at the top of my right leg. I’m also frustrated because I want to laugh but it is too painful. The more I tell people to stop being funny the funnier it is to me.
One Week after surgery. I’ve been doing really good. I’ve had some low moral and energy moments but taking a shower and acting like I’m leaving the house really cheers me up. I’ve left the house a few times. I first took a walk down the street. The fresh air is great. I went to the acupuncturist and it really relaxed be. He is working on healing my incision. He suggested I keep windows open all the time including in the hospital. It gets the sick out of the room and helps with nausea. I followed his advice.
Week and a day after surgery–I went to see the boy I mentor at lunch. I actually put on underwear and jeans for the first time in a week. Putting on makeup and fixing my hair felt good and I was not that tired. My stomach is still swollen, I’m numb around the scar, and I’m taking 800mg Motrin every 6 hours. I have very little pain. Sleeping is a bit hard since it feels strange to sleep on my side. Sitting up has gotten easier and I can bend straight down using my legs to avoid bending at my waist. I still walk a little bent forward.
I will see my doctor in two days. I received stitches under my skin so I will not have to deal with removing staples.The incision is healing great so it should be a good visit. I have several sex-related questions. It may seem crazy but I started craving sex three days ago. (kept my ovaries and cervix) You can not have vaginal sex for 6 weeks but I was wondering how much pressure an orgasm puts on the parts that are healing. Be sure to keep your ovaries and cervix if you can. I think the ovary topic is clear but I learned that the cervix keeps the vagina’s full length (instead of 3 inches) and the cervix has nerves associated with orgasms. It also provides structural support for the vagina. The surgery is shorter too. I somewhat wish I had decided on a myomectomy and kept my uterus to avoid possible orgasm issues but a SAH was a good choice.
I’m going to continue to increase my walking outside until I’m back to my normal 3 miles. Then I can start running again. I’m not sure when I will return to work. Is is tricky. Women posting at http://www.hystersisters.com have gone back to work after one week but most are waiting for 4-6 weeks. If I go back before I heal inside it could slow down my running later. A common comment is feeling great–doing too much–and crashing for several days.
Eat your veggies, fruit, grain, and legumes prior to surgery. I think it really will help you heal faster. If you can, try the ExAblate option and avoid the surgery. I’m sad I was not a candidate but maybe you can be luckier than me.
Last word. If you choose surgery be aware that pre-op is usually worse that post-op. It is normal to be stressed. Make sure to get all your home chores, grocery shopping and logistics planned before surgery. You will also need help the first few days at home.
Yes, there is also the possibility of post-op issues but if you did your research in advance you will make a wise choice.
February 7, 2007 at 11:04 am
I agree with being a bit frustrated by the negative books and internet comments out there . I was really feeling guilty for even considering a hysterectomy, when so many people seemed to consider fibroids a totally inadequate reason for having one. Of course I was the one dealing with the flooding, the back pain, the constant pressure on my bladder and eventually bleeding for 30-40 days straight. That all put a different sort of spin on the decision.
I found a doctor who agreed that the symptoms I was going through needed to be addressed and was willing to let me try a variety of options before we jumped right to surgery. The journey of treatment options began about a year ago after many years of dealing with the heavy bleeding on my own and taking iron to keep from getting too anemic. I went through a D&C with polyp removal, rounds of prometrium, provera, and finally 3 months worth of Lupron shots. Since I was 48 when the treatment started, I was hoping to “wait it out” and go through a natural menopause. Even with the Lupron shrinking the fibroids somewhat, the pressure was still there and the bleeding let up, but still lasted 30 days. At that point I decided it was time and scheduled the hysterectomy.
I had a supracervical abdominal hysterectomy on Jan 31st. I opted to keep my cervix and aimed to keep the ovaries if they looked OK. One of them had multiple cysts and the doctor decided it should come out. I had told her I trusted her judgement on that issue, so am comfortable with her decision. I know there is no guarantee that the remaining ovary will continue to function, but so far so good with the hot flashes staying at bay.
My recovery has been fairly uneventful so far. I spent 3 days in the hospital and have been in a bearable amount of pain since then. I refused any narcotic pain meds once the IV was out since they were making me very nauseated. I have been doing pretty well with just Motrin. I was a bit surprised by the amount of internal pain, but when I had the staples removed fron the incision yesterday the doctor said it was probably due to bruising. I’m not sure what they bruised in there, but today it is feeling better to the point where I have to remind myself not to overdo it. It helped to have her use the word bruise as I think about how a bruise looks and feels on the outside and how long it takes to feel better and heal. That made me feel that all was probably well and that I hadn’t ruptured something with all the sneezing I had done a few days ago (Get well bouquets are a nice gesture, but I think I am allergic to one of them!).
This website has been very helpful over the last few months as I have gone along the fibroid journey. There are things that only someone who has been there can understand…like reaching work with a change of clothes in hand, but realizing you are in the middle of the parking ramp, have passed a huge clot followed by a flood and the nearest bathroom is half a block away. I don’t know what the rest of my recovery and potential side effects from the surgery will be, but at this moment I am so thankful to not have to be in fear of the heavy bleeding anymore.
Best wishes to all who are recovering from surgery or other procedures and wisdom to those who are facing decisions. I appreciated the opinions of others, but really only found peace once I had made my own decision that I felt was the best for my situation.
February 9, 2007 at 4:09 pm
Hello ‘Been There’! Thanks for your comment and I hope you are Healing Greatly! I don’t have my surgery until April 10th (getting two doctor schedules together-rectocele/bladder sling/hysterectomy and two other repairs in the area) but have been reading and reading. It seems like a long way off, but I know it’s just around the corner. Best Wishes for a Speedy Recovery!
February 12, 2007 at 1:12 pm
Thank you for your kind comments Luci. Recovery is going well, but I am learning to listen to my body. When I hurt it’s time to slow down–or probably more accurately past time, but it makes me realize I need to take a break. Before surgery I made a list of “low energy projects” that has kept me busy and feeling somewhat productive, but not over doing it. I have been far from bored, and considering we have just gotten through a very cold stretch of weather here in MN I have been content to hibernate a bit!
Luci, you had asked about the usefulness of a hospital type bed in a previous post. While in the hospital I found it quite difficult to get in and out of bed, so in comparison by the time I was home our bed wasn’t too bad because I was healing. It still was painful, but each day got better, so it was only the first couple of days home that it was an issue. I know that’s probably not very helpful, but yesterday a friend who also had recent surgery asked if they had advised me to hold a pillow over my abdomen when getting up from a chair or out of bed. They had only advised that for coughing. I wish I had been able to try that one, although it seems like I was already using both hands to get up, so maybe it isn’t as helpful as it sounds.
A bit of advice I found useful in preparing for surgery. Do whatever you can to decrease stress and make life easier once you are home. In my case with a husband and 3 kids to think about, I got a few meals cooked and frozen and stocked up on the basic supplies–food and otherwise. For me that has made the recovery process go a lot smoother as we aren’t running out of things and meals happen even if no one else feels like cooking. Sure beats take out food! Besides that it was a good distraction to keep me from thinking/worrying about the surgery itself. Whatever works… Less stress = more energy for healing.
Take care!
February 19, 2007 at 11:15 pm
I came back from vacation on August 1st and within a week I found a lump inside my stomach. I went to my regular doctor to be told I had a cyst in my ovary. After a quick trip to the hospital I found out I had a rather large fibroid attached to the outside of my uterus. Within three weeeks and 1 trip to the ob/gyn I learned I would be having LSH. The fibroid was growing rather fast and was causing problems with other organs. So September 1st 2006 I had surgery. It was the best thing I ever did. I was only in the hospital for 36 hours and had complications from the first surgery that ended up causing a second trip to the operating room. I was off work for 2 weeks and starting exercising normally within four weeks. I feel great.
March 12, 2007 at 4:17 pm
I am in the process before making decision on surgery. I have visted 3 doctors who suggested hysterectomy judging just by the seize of the fibroide.
As it is intramural one, I have no sympthons. If not a regular gyn appoinment I had last Nov., I would not know about the problem, although now – when I touch my belly, I feel the fibroid quite a big, as a tennis ball perhaps.
I would like to avoide the surgery. Any advise from you? I am 47 and in perfect health conditions. I asked my doc about the embolization, but the doctors go rather for surgery because of my age. One doctor just on USG result’s basis, said the surgery is necessary, but not so urgent.
I appreciate your comments and any advice .
Ely
March 12, 2007 at 7:02 pm
hi all .I had a vaginal hysterectomy on 20th Feb 2007 got discharged on 23rd Feb 2007. I’m recovering and taking each day as it comes. Like somebody stated , my body talks to me so I take things easy . The pain comes like contractions.Sometimes I can walk properly sometimes I can’t. I’m getting there though. My bowel movement is still slow but I’m getting there despite all the fruits and water . I’m now on lactulose. Nice website though.
March 13, 2007 at 6:59 pm
I have just gone thru the websites and found the floowing one:
http://www.uterine-fibroids.org/uterine-fibroids-en/index.html
It’s about non-invaisve uterine fibroids treatment, new technology and many expectations…
Has anyone of you the treatment by ExAblate? I will consider it surely.
Will you?
March 13, 2007 at 7:18 pm
Hello Everyone,
I wanted to make sure I commented on this site. I had a full hysterectomy on 2/14/07 , I retruned to work in 3 weeks, I am in outside sales so when my dr said I could drive I went back. I am taking it slow leaving early each day, however today was my first full day 8:00 – 5:00, I get tired and sore by the end of the day( I have a bikini insision). Really I have nothing but GREAT news to report after my sugery. I am truly sorry for all of the people on this site that had bad experiences. My sex drive has increased, and I dont have any of the other Bad things happen that others have. I do have one complaint, above my insision I have what I call a “blupper” but on another site they have named it a “muffin top” I did not know about that, so if anyone has any excersises I could do to get rid of it, I would really really appreciate it. Oh, another issue I have is Night Sweats, but nothing during the day, but it does make it hard to get a full nights sleep. Ugh !!!!! I look forward to chatting with all of you and sharing our experiences ! Thank You, Look fowrd to hearing from everyone !
March 14, 2007 at 9:33 am
I had a particel Hysterectomy Feb 26 th its been 2 weeks and Im feeling really good. I had a Laproscopic one. Two small insitions on either side of my belly. I can not believe how fast I healed! Im 31 years old and had terriable heavy bleeding and Fibroids. I get tired easier now but it gets better every day. I had some night sweets the first week and some crazy mood swings (even though I kept my Ovories) it was the hormonies adjusting Doctor said and I had some weird left side spasm headaches that only lasted 2 days those were nasty but went away.
Im so happy I did this after all. I only spoted 2 days. I was shocked they told me 2 weeksand I only did 2 days. Im back to being mom and feeling great! I kept my Cervex as well. I have a strong sex drive so far. MY bladder is still a bit off but that too is getting stronger. I sure am looking forward to white sheets and lots of nice underwear.
Thanks
Heather Ann email me if you have any ? [Rainofawildflower AT yahoo DOT com]
[Edited by EclecticGeek so you won't get a ton of spam in your inbox.]
March 14, 2007 at 11:12 am
Ely,
I have two pages where women are talking about their ExAblate experiences:
Does anyone have an experience with ExAblate (MRgFUS)?
New treatment uses sound waves to shrink uterine fibroid tumors
You can find other discussion topics in the Forum including:
Just what are your uterine fibroid tumor treatment options?
A lot will depend on the size, location, and number of fibroids you have.
March 14, 2007 at 6:51 pm
Thank you all for sharing your experiences. I always learn so much.
I’ll just add links to a few related pages that you can visit. Remember, you can also stop by the Forum page to see a list of discussion topics.
How are you feeling after your Abdominal Hysterectomy?
How are you feeling after your Laparoscopic Hysterectomy?
How are you preparing for your fibroid treatment?
What should I carry with me to the hospital before my fibroid surgery?
Muffin top after abdominal surgery? What’s a muffin top and how do I just make it go away?
Are you healing your spirit and mind as well as your body after your fibroid procedure?
To ade:
I don’t have a separate post for Vaginal Hysterectomy. I start separate pages once I get visitors with that experience. I’ll start one if you like.
Best wishes to everyone!
March 28, 2007 at 1:57 pm
Hi My Name is Lisa, And i Just had a hysterectomy,Complete!, and i do believe this is the best thing that has ever happened to me..I Had surgery The 12th of Feb.was released two days later, Hurt like Hell for a week and a half, after that i just made myself get up and walk, i mean walk!! I didn’t need the pain pills any longer, and i was better then the rest of the girls when we went back for our 6 w k’s,,, i was just moving better, looked better, and just overall was feeling Great! it’s not like all of that, yes it doe’s hurt like hell at first! but you just got to get up, and start moving slowly, And about the Sex life, change, No none of that… our sex life is soooo much better, The man will love your new Body if you let him, and so will you, sex is so much more intensified, it is great! just go slow at first…Trust me you won’t be able to keep him at bay ‘ladies. trust me’, Just Stop making it an Issue, and just enjoy you’re Man,And yourself, Life is Great finally,!!! Stop, and look at all the good in a hysterectomy….
March 28, 2007 at 2:01 pm
Just looking for the Best Excersise program after a complete hysterectomy,
does any one have a good excersise for me to do??
March 28, 2007 at 2:08 pm
Also a reminder for you ladies going to the hospital, Don’t take anything ,accept for what you came in, and i hope you bring sweats, cause that is all you will be wearing for a while, just a little reminder, you wont need a thing, the hospital even gives you booties, and to shower they will give you the soap you will be needing, so nothing, ladies…And no books for reading, you won’t want to read!!
March 30, 2007 at 11:00 pm
I had a full hysterectomy at 27 because i had endometriosis ..i had 3 yo twin boys thanks to IVF at the time and i was married for 8 years and loved my husband like crazy ,i actually had the hyterectomy on my 8th wedding anniversary..
It has now been 4 years,im a single mother now, my husband left me 2 years ago cause of severe mood swings i was having ….i cry continously everyday and cry myself off to sleep..im only32 and once guys know i can’t have kids they don’t want me ..Im tired all the time,i still have mood swings …the hysterectomy was the BIGGEST MISTAKE OF MY LIFE…if i could take back time i wouldnt have had it and just put up with the bleeding and pain every month that i used to have…I am struggling thru each day now trying to raise my 7yo twin boys by myself,i have no help and their dad moved overseas to live with his new wife
I would warn anyone not to have a hysterectomy at an age where having kids is natural,even if u have trouble concieving at least you have that chance to maybe be pregnant someday….
March 30, 2007 at 11:11 pm
oh and lisa….u had just had the hysterectomy..i was feeling like you for the first year than after a few years your hormones are whacked .I dont know how old you are but i think when u have it at such a young age as i did your mind isnt ready for the major changes your body is going thru..i used to tell people it was the best thing that ever happened to me as well but when u snap at the blink of an eye and your partner wonders what the hell he did and u just cant control yourself you start to drive the ones you love away from you..after my marriage ended i thought back and realised the crap he was going thru with me…i lost interest in sex ,yelled and screamed at nothing ,got so tired that everyday was an effort and didnt wanna do anything..if i didnt have the hysterectomy he wouldnt had gone thru all this ..i had never been a tired ,angry person..i lost myself and now i have trouble trying to find myself again ….my ex husband actually met a girl that was just like me b4 i had the hysterectomy….it hurts….
Lisa,if u see yourself changing in a way thats not you,try to get help quickly to avoid something happening like what happened to me..
April 1, 2007 at 6:20 pm
I had a hystercetomy on March 12th and today, April 1 I am feeling much better. Right now I have a difficult time sleeping because of discomfort at the incision site, but I feel so much better during the day. I lost 10 pounds and am thinking positively about the experience. I am taking it slowly and I just want to focus on my recovery. I had no complications to date and feel more tired than usual, but that is about it.
April 4, 2007 at 5:02 pm
I had a hysterectomy and bilateral oophorectomy 13 years ago at the age of 43 due to complete uterine prolapse. I had a lap-assisted vaginal procedure done on friday morning, came home on saturday and was weeding the garden by tuesday, albeit not too vigorously. I really only had moderate pain which OTC analgesics took care of. I went back to work 2 weeks later and felt a little more easily tired for a while but that was about all. I’ve been on estrogen replacement therapy since then but developed osteoporosis anyway. ( I have most of the risk factors… white race, low life-time body weight, low life-time calcium consumption and family history of osteoporosis). I am managing this with the appropriate medications and don’t feel it is too big a deal. I never experienced any of the unfortunate complications mentioned by many writers in this blog… mood, libido, strength, weight etc have all remained normal. Gone are the monthly mood swings and constant low back pain from the pelvic floor relaxation… I really don’t regret having a hysterectomy at all. I find it difficult to believe that all the ills I see mentioned in the previous entries can all be ascribed to the loss of uterus and/ or ovaries. I think that there surely must be other contributing factors that maybe the writers themselves are not even aware of. Sometimes its easier to blame one circumstance or incidence in one’s life for everything than to explore other options… Not that I don’t think that there are some very real post-op complications however…
April 12, 2007 at 9:04 pm
I just had a lapascopic hysterectomy on March 22 I am 37 years old and I am still spotting. How long does this happen? Overall I feel great and I just went back to work on 4/12/07. I was able to keep my ovaries as well as my cervix. I too, can not wait to have sex again. I am still having just some minor pain; however the spotting has me concerned. Can anyone comment on this
April 24, 2007 at 11:37 pm
I am 48 yrs old and have a degenerating fibroid. I have had this fibroid for 10 yrs without any problems. But, now, I am having so much pain and discomfort. Right now I am scheduling a hysterectomy (keeping ovaries) and can not wait to have it done. YOU CAN LIVE WITHOUT YOUR UTERUS, pain free in fact. Whay are so many people ( not childbearing age) willing to go through so much???? Take charge of your own destiny, a hysterectomy is not the end of the world, its a new begining.
June 26, 2007 at 6:57 pm
HI,
I had a hysty and the oopah surgeries 9 days ago for cervical cancer. I am 51. I thought it went super! In and out within 24 hrs. It was an abdominal type. My question is I was fine untill yesterday, I’ve noticed that every time I stand for too long or walk my scar burns and pinches inside. Is that normal? What can I do for it?
August 28, 2007 at 10:16 am
Hi there…
I had a hysterectomy exactly 8 weeks ago…The surgery went well…they removed one ovary…4 days hospital stay – extended because I didn’t have a bowel movement…lots of painful gas alleviated by walking, ginger tea…lost lots of weight…that’s the good news…prior to the op. there was minor urinary leaking…after the op. the ‘flood gates have opened’…now rely on Depends…I am 49…interrupted sleep…lots of tests (VCUG, urinary analysis, cystoscopy, ultrasound)…Urinologist is baffled…me too. Anyone had this experience?
September 21, 2007 at 11:30 am
Hi There, i had a subtotal hysterectomy 10 weeks ago, all seemed fine at first, home after 5 days, the only probs I had were with wind, but hey I expected that.
Than the wind got really bad and I could not use ny bowels, I was in complete agony, spending a penny started to become a problem, it did not sting or burn, but at the end, it felt my entire bladder was going to fall out, I went back to my specialist who diagnosed adhesions, nothing to worry about, but I have since found out I could have a procedure to prevent adhesions if I was prone to fibroids, which I was.
Any way after another three hours of surgery to remove the adhesions, I was told they had attatched thmnselves to my colon, intestine,bowel and bladder, having lazer treatment has hopfully got rid of them, FOR NOW, they run the risk of coming back, at the time of the surgery they filled me full of a gel to stop the adhesions reappearing, this has caused a problem with my gut, I now suffer from heart burn & reflux, eating is a nightmare for me, I am about to throw in the towel, its bought me down so much, iI cry all day, I am 8 weeks behind returning to work and all the associated problems that go with that, has anyone else out there experianced the same problems, is so are you better, is there hope for me x
January 22, 2008 at 4:36 am
I’m so glad I’ve found this website! I hope Suzie’s problems have cleared up. It’s really good to read everyone’s stories, although some are fairly alarming. I’ve just spoken to a specialist. I have a largish ovarian cyst, it’s my third, and because of my previos surgeries, the doctor wants to remove both ovaries and my HEALTHY uterus, doing a vertical abdominal incision. This seems really drastic to me, and I’d love to hear from others. Does anyone out there feel this is a wise course of action?
February 11, 2008 at 6:51 am
Hi all. Cool site Google
Thank.
February 20, 2008 at 9:01 pm
I had a vertical abdominal Hysterectomy at the age of 30. I had a period for nearly a year and a half, very heavy flow with clots the size of a baseball daily. They performed a D&C twice to try tro remove the fibroids from my Uterus and during the second time they found one that had covered my entire Uterus and had attached itself to surronding organs with a few week period. They stopped the procedure and told me the result and what would have to be done. I pulled the lines out and went home. 3 weeks later the tumor burst and I nearly bleed to death. I have been period free for 17 years and surprisingly, my stomach was never flater after 2 children. I never gained weight from the procedure either which was a fear I also had. I am fat now due to old age and lack of dicipline, but that is not a factor in this case. If you do have the procedure do not let them take your ovaries. Ovaries produce estrogen for up to 30 years after menopause. If you let them take them, you will go into menopause instantly and will be subject to heart problems and bone problems.
April 29, 2008 at 1:08 pm
I came across your site and am wondering if you know where I could send my disc with photo’s to have someone tell me what they mean…. I have had 5 abdominal surgeries since my last born he is 3, my last surgery was dec31st hysterectomy leaving one ovary, recently I had so much pain I went to a place not affiliated with the past dr.s who left me to die leaving staph 1,2 and 3 in me causing all my problems in the first place. The catscan paper I have abnormal, ultrasound abnormal, I then went and got a second opinion because noone is doing anything about this. The new dr did an ultrasound and it was abnormla, they oredered my hysterectomy results and all of a sudden they decided its fine.. I demanded help at this point, they then sent me to get another ultrasound but this time sent me downstairs, and yesterday she had 3 papers not showing me all but one saying that everything poofed…. Please that is so so wrong and a lie…. Im desperate for help for someone to please look at my films and tell me they see what I see. The catscan reports 6.4 complex mass then ascites, and surgical clips, the ultrasound reported same thing pretty much except they didnt see the clips, but said multiple mass solid components…
May 2, 2008 at 2:38 am
Yikes Lisa! doesn’t sound good… but not sure who here can help… maybe you can try: http://www.hystersisters.com/
good luck! keep us posted.
September 5, 2008 at 4:43 pm
Just thought I would give my input, it might help someone. I had a laproscopic hysterectomy on July 12th, so far it is the best decision I made. I have been battling with anemia for years, not able to go places, for fear I would make a mess, and embarass myself. I had 2 units of blood in Dec. of last year, a D & C in Feb. and finally said enough is enough. My ovaries were taken out, and so far I’m tolerating the small hot flashes without any therapy, but I’m 51 years old so probably was on the tail end of my stint with menopause.
It is a decision to not take lightly, but each person’s reasons are different, and I trusted my gyn.
October 18, 2008 at 8:32 pm
I am scheduled to have a hysterectomy in January. I already had one myomectomy two years ago (largest fibroid was 13 cm). Now, my uterus is twice the ‘normal’ size. (large fibroid is uterus-sized). I have read online that a vaginal hysterectomy can only be done if there are ’small’ fibrioids, or a ’slightly enlarged’ uterus. What the heck does that mean?? How small is small?
Any help, or experience feed back would be appreciated SO MUCH. Thank you!
October 23, 2008 at 5:59 pm
If you are not scheduled until January, you may be able to take medication, leuprolide therapy, to shrink the fibroids, making a vaginal hysterectomy possible. I understand that there are some side effect but that may be outweighed by less pain and a quicker recovery.
Good luck.
October 24, 2008 at 7:43 pm
During my pregnancy a year ago, an undetected cervical fibroid grew out of control (the size of my 7lb 15oz son) and I had an emergency c-section during delivery. During the c-section my fibroid was cut and I nearly bled to death (all drama aside, really). My doctor also discovered a “forest of little” fibroids along the top of my uterus during the c-section. In my 1 year check up yesterday, my doctor informed me that my main fibroid was still the size of a softball and she recommended an abdominal hysterectomy leaving the ovaries. I am 37. I have been very symptomatic in this first year of my son’s life. My doctor suggested that if I had the myonmectomy, more fibroids were highly likely and I’d probably need another surgery before I went into menopause.
The recovery from my c-section was horrible (no doubt because of my fibroid situation). I dread going through another abdominal surgery. I’m young and my sexlife has been in the toilet since about a year before I got preggers (amazing I did) because of pain, etc. Are there any statistics about sex drive, etc. after a hysterectomy. My husband and I were very passionate before the fibroid took over my life…. I want that back!
October 2, 2009 at 12:11 am
Hi Elisa,
What did you decide to do?
November 23, 2008 at 5:21 pm
I had a supracervical hysterectomy with bilateral oophorectomy in April of 2008. At the risk of sounding like one of those happy clichés, I will say that is was an excellent decision for me with no negative consequences. Two things that were very important early on were choosing both an experienced surgeon and a dedicated physician who understood hormones thoroughly. Believe me, not all of them do. I am excruciatingly sensitive to hormone changes so my body chemistry had to be managed with extreme care.
I spent 4 agonizing months in contemplation before I signed up for the surgery. It was accounts like Lucille’s from November 10, 2006 that gave me so much twisting agony. I have nothing but sympathy for her and her condition. It sounds miserable and I so hope that she has managed to find help and get some relief.
However, I must offer some counter opinion in reference to her account so that other women reading it and considering hysterectomy will get another viewpoint. That is essential because I don’t think she represents the norm and I also believe that most women can avoid most of her complications with proper hormone replacement therapy.
She did state in her account that she did not respond well to HRT and that is probably the source of most of her problems. Good hormone management is the cornerstone to riding out the inevitable changes that come with surgical menopause. Be aware that Premarin and its sister medications are often not the answer. Many, many women don’t respond well to them. I avoided them from the beginning because I had a good doctor who didn’t believe in anything but bio-identical estrogen. If you are considering any kind of hysterectomy, even one with ovaries intact, you need a good doctor who thoroughly understands hormone management. Ovaries that remain intact after the hysterectomy can fail prematurely. And if they are removed, unless you are already in full menopause, your body may go into a kind of shock when their function suddenly is torn away. Be prepared to be patient with yourself while you grope around for the right dose of estrogen to replace what is lost. It can take a while and you must be methodical in your adjustments. You will also need a doctor who grants you the latitude to make the adjustments that respond to you own personal symptoms. They can guide you, but in the end, only you can tell what works.
In the next few paragraphs, I will quote Lucille and then add my comments:
“I have had so many post-op complications and problems that I could write a book. But that would be a waste of time because others HAVE written books about this- the problem is that I wasn’t aware of them until after surgery. Had I been, or done any kind of research, like you are, I would have known NOT to have a hysterectomy!”
This might have been an option for Lucille, but for other women, it might not be possible to avoid the surgery. Reading a letter like this can leave these women feeling backed into a corner and more frightened than ever given what they are already facing.
“Without going into the details, here’s a partial list of problems I’ve had since surgery: First of all the absolute worst is the loss of my sex life. No more orgasms, shortened vagina, no libido, atrophied vagina, nerve damage”
Libido problems are hormonal in nature. Removing ovaries cuts off the main source of testosterone and without that hormone, there is no libido. Adrenals are a secondary source, but it isn’t always reliable. I talked at great length with my surgeon about possible nerve damage and she even showed me the pictures of my untouched nerve bundle after the surgery. Lucille’s problem could have been from an inexperienced surgeon or from unforeseen surgery complication such as adhesions that had to be removed or fibroids or cancer. She didn’t give any details. A straightforward surgery doesn’t require cutting into the pelvic nerve.
“ … I could go on, but will stop there. The list continues with: Rectocele (I often have to manually remove stool now), bladder problems,”
These two are unfortunate and can happen. Sometimes pelvic exercises and hormone therapy can help, but I, like many many other women, did not experience these problems so they are not a given.
“insomnia, dry eyes, skin change, hair loss,”
I don’t know about the dry eyes, but insomnia, skin changes and hair loss are most certainly related to the drop in estrogen. These are common complaints among women who go through natural menopause. Vitamin deficiencies can cause hair loss, too.
“digestive problems, TIA’s, vision change, heart problems, tooth loss, osteoporosis,”
I don’t know about the TIA’s or mini strokes, but the other things can be directly linked to estrogen loss. The heart problems and osteoporosis happen with many, many women who have declining estrogen with or without uterus and ovaries. Gingivitis is common even during pregnancy. Any hormone changes affect the health of gums. Lucille is blaming the surgery, but I think this is grossly unfair. It probably influenced the timing of the problems, but they most likely would have happened anyway with the hormone decline in advanced menopause. It is one of the biggest arguments for HRT after menopause.
“weight gain, loss of energy, impaired memory, cognitive problems, significant changes in maternal feelings, empathy, bonding, desire and other emotions “
Definitely hormonal. I have personally experienced most of these at a time of hormonal deficiency. A woman’s very personality can be severely altered with a change in hormones. Now that my hormones are balanced, my emotional state has returned to normal.
“ . . . and more. MOST of these problems are from losing my ovaries, which I now know are endocrine organs and, as such, place a significant role in other body functions and overall health. NO ONE told me this prior to surgery and the whole “hormone thing” wasn’t even mentioned by my doctor before surgery.”
That is sad. She should definitely have been told.
“NOW I know that hormones are incredibly important for our health. NOW I know that not every woman can tolerate artificial hormones and that if you are one of these women and you lose your ovaries, you are screwed. NOW I know that “keeping” your ovaries when having a hysterectomy does NOT mean they will keep working. As a matter of fact, women who “keep” their ovaries are more likely than not to experience ovarian failure within 2 years.”
All of this is true and after discussing the intolerance of artificial hormones comment with my well informed physician, I believe that women need to be aware that there are many different delivery methods for bio-identical hormones. The right dose might be hard to achieve, but very rarely is it impossible. I know Lucille is angry and despondent by her experience, but it is not fair to make women feel so helpless and crushed by a decision that they might have no choice but to make.
“NOW I know that the gynecologist pass you on to other doctors (like urologist, neurologist, cardiologist, rheumatologist, gastrointerologist, opthalmologist, dermatologist, endocrinologist, internist, dentist, etc. etc.) when you have problems following hysterectomy because they have already removed the body parts that they specialize in!”
All true and when hormones are involved, I have found that doctors in these specialties will not think to blame estrogen deficiency and instead will pump your system full of all kinds of interacting drugs and perform all kinds of other procedures. Be aware of your own body and be an active participant in you own treatment.
“BEFORE surgery, I thought that complications among hysterectomized women was “rare.” I think I based this on the fact that hysterectomies are “common” and considered “safe.” NOW I know that what has happened to me, and millions of other women, is not “rare.” Post hysterectomy complaints and problems are much more common than the public is aware of. It’s just that the problems they create are extremely personal and embarrassing and most women cannot discuss these details with even their closest friends.”
What is not rare is the magnitude of ignorance on the part of doctors and patients alike about the role that hormones play in the body. You have got to find yourself a good practitioner who understands the power of these tiny molecules on your well being. My own mother had a complete hysterectomy to remove massive bleeding fiboids in the early 80’s and went into a complete tailspin. Premarin didn’t work for her and no other hormones were available at the time. I have seen first hand how devastating this change can be.
“NOW I know that the hormones the ovaries AND the uterus (yes uterus) produce involve more than just estrogen and that they are major factors in feelings of love, empathy, joy, happiness, bonding and maternal feelings”
Bull. I have read about endorphins that the uterus secretes that can’t be gotten from any other source and I don’t believe it. The brain is by far the biggest source of endorphins and it is more than capable of adapting to any deficiency somewhere else. I am not even sure the uterus secretes them at all. It is possible that it is to be an analgesic for cramps but most of us women can testify first hand that it must not be a very effective one. I read one of the books on Lucille’s suggested list written in the 80’s and the doctor made some other statements that I know are false, so their credibility is blown as far as I am concerned. Ovaries secrete estrogen, progesterone and testosterone. All of these can be replaced with bio-identicals.
“No one told me this before. No one told me that gynecologist prescribe over 75% of the antidepressants prescribed in this country either”
Because they don’t understand that sufficient levels of neurotransmitters depend on consistent estrogen levels. The medical community is woefully inadequate on this topic.
“That might have been a clue had I been aware enough to understand it’s meaning before my surgery.
Before surgery, I didn’t know that the divorce rate for hysterectomized women is higher than others. (Neither the husbands or the wives understand the changes in the women.) Nor did I know that removing my ovaries would make me, a single woman, undesirable to men on a level that they themselves are not even aware of. I didn’t know that I would be giving up my pheromones, and the other “chemistry” that is at the root of all sexual attraction.”
I have done extensive research and I have never found any plausible evidence to back up this claim. I think she is just being overly dramatic here because she is so unhappy and that very unhappiness is sending out some negative and “keep away” vibes. Hormones play a very big part in shaping our personalities. Yank those chemicals away and some of us can become very angry, bleak, desperate creatures. As I said, I truly hope Lucille has found the help she needs to overcome these problems. I want her to enjoy companionship and to be able to share her life with a loving man who understands and appreciates her. I just don’t want the bitterness of this post to terrify women in the midst of a painful decision.
“To any woman who is considering hysterectomy, I would say that unless you are in a life threatening situation (fibroids are NOT in this category)”
This is not true, fibroids can be debilitating, they can destroy your health and, yes, they CAN be life threatening.
“That you should make sure that you have done all the research you possibly can and try all other options before resorting to a life-altering, irreversible, major surgery like hysterectomy.”
It is definitely true that the decision should never be taken lightly and no women should proceed with it while she is uninformed. Ask questions and lots of them. Know your options.
“I wish I had read “The Hysterectomy Hoax” by Dr. Stanley West; “Misinformed Consent” by Lise Cloutier-Steele; “Your Guide to Hysterectomy, Ovary Removal & Hormone Replacement” by Elizabeth Plourde or “Hysterectomy: Before & After” by Winnifred B. Cutler, BEFORE I made the “decision” to have this surgery. I wish I had gone to the HERS Foundation website, or Sans Uteri, or a site like this before I let myself be blindly led down the path into this nightmare of post-hysterectomy life.”
If you are a person who likes to be thorough, I suggest looking over some of these sources, but expect to find embittered accounts of women whose lives were turned upside down as much by the lack of post operative hormone management as by the surgery itself. Surgeons can botch surgeries. It happens sometimes. Circumstances can cause surgeons to make difficult decisions during surgery that involve tradeoffs. Sometimes the outcome is not good for the patient. This is a risk with any surgery, not just hysterectomy. You are having your reproductive system removed and it is embedded in your pelvis with a lot of other body parts. Of course, you don’t expect it to be minor. But if you do your homework and pick the right doctors, you shouldn’t live in terror of it either.
If you are like I was and the surgery is not something you can avoid, then don’t let a post like Lucille’s make you sit down and cry your eyes out over a fate that will surely be yours. No one has a crystal ball, but Lucille and others like her paint a picture of certain mutilation and a lifetime of misery that is inaccurate and misleading in a vast majority of cases. Learn from their mistakes by choosing your doctors carefully, asking plenty of questions and making sure there will be a physician there to provide you with hormone relief long after the organs are removed.
November 24, 2008 at 1:27 am
Short anecdote. I suffered from fibroids for the past 4 yrs. This past summer my symptoms & anemia came to a dramatic head and I was finally diagnosed. I’m late 40’s. I read & read about treatments available and was preparing myself for the possibility of a hysterectomy when my doctor said he would be able to treat me with a hysteroscopic myomectomy & ablation. I was totally relieved for a few reasons – emotional, physical & work. Had the procedures & all went well. 4 months out my entire life has made an upswing. Happy, happy.
Enter the ironic twist. My family has a high instance of late life breast cancer. So, this fall at my annual check-up I mentioned it and was referred to a specialist for consult. She gave me a wealth of information…including a list of proactive measures that affect the risk of breast cancer that states…..the brochure says removal of ovaries (oophorectomy) prior to menopause decreases the risk of breast cancer by a significant percentage in high risk women.
I won’t have the surgery as a proactive measure, but it does strike me as darkly humorous that I worked so hard to save those darn ovaries and that is may not have been the best thing.
I guess the moral of the story is….nothing is black and white….etc., etc., etc.
November 28, 2008 at 9:20 pm
LEAH,
BRAVO, I loved what you wrote you seem like you do alot of reasearch like me. I have not written here for a while however I do read the blog every so often. I would love to hear more about your positive experieces,do you live in Canada. I am trying to start a support group for women with positve experiences.. maybe we can exchange emails…
December 19, 2008 at 11:04 am
In a little over two weeks, I’m having my hysterectomy. I’d say I’m of two minds, but it feels more like twenty minds.
I’m so ready to be done with the pain, and to rejoin my life (fibroid pain & taekwondo are NOT an enjoyable mix). But as many of you know – it’s not easy to say goodbye to the “girl parts” and hello to the unkown. I continue to thank God for the support of family and friends, and that I have all of you & your experiences too. Thanks for your posts. They’ve made such a difference for me. God Bless you all, and I pray you have a VERY Merry Christmas!
December 20, 2008 at 12:00 am
At age 47 I had an abdominal hysterectomy February 2007. All my life I had “female” problems and after 10 years of taking different medications to mask the pain and symptoms my HMO finally employed a doctor who listened to my problems and ran tests and realized somethign realy was wrong and sent me to a specialist. I have a family history of ovarian cancer and I finally feel alive and can now get on with my life now that I don’t have to worry about that. I had been through two c-sections, but the hysterectomy recovery was a little rough. Having my first bowel movement was the worst. I just had my staples removed that day and sat on the toilet for 2 hours with no results. It took 2 days of basically sitting on the toilet before I was able to go. I do find it harder to lose weight, but other than that I feel the best I have in many many years, I have no pain and absolutely no regrets.
December 20, 2008 at 2:12 am
Demi,
Just logged on and noticed your reply. I would love to correspond more with you. I live in the US. If you can get a private message to me though this website, I’d be happy to hear from you. I am not certain how to exchange emails.
Carolyn,
I know exactly how you are feeling. I felt so ambiguous even up to the moment that they wheeled me into the operating room. I just had no idea what the me on the other side of the experience would be like. Should I be saying goodbye to something that I would never see or feel again? What would that something be? I had no way of knowing that it would not change me in any way except to make me better. I have lost nothing of who I really am.
What you are feeling is perfectly normal including the sentimental attachment to the organs you were born with. I had that too.
Luckily, I was past the childbearing phase of my life, but if that had been a consideration, it would have added a greater depth to my struggle to deal with what was happening. Had I needed to, I am certain I would have gotten past that, too, given time.
It has only been 8 months now since the surgery, but I feel so completely recovered, that I have to remind myself that it really happened. I don’t think of myself in terms of not being “intact”. I don’t like that phraseology. I am just as whole as I ever was and no less of a woman or a human being. Who you are is really in your brain and in your soul. I will pray that your recovery will be just as swift and that the outcome will be just as positive.
December 26, 2008 at 5:34 pm
Thank you Leah.
December 28, 2008 at 3:35 pm
hi ive just found this page and thought i would say im going in for an abdominal hysterectomy on jan 26th and i cant wait. i dont have fibroids but for the last 3 years have had really heavy periods often lasting for 3 weeks out of the month and as a result of that am constantly anemic. im lucky i have had 3 children and dont want any more, im 44 and just want my life back now, im fed up with planning every trip by where the toilets are. will come back and post after the surgery if you want me too, but until then hope all is well with everyone and a happy new year to you all
December 29, 2008 at 2:05 am
Leah and Demi, we haven’t heard from the moderator in ages… so probably the only way to communicate with each other via email is to share it here… but don’t put in your exact address as there are programs out there that search for email addresses. I’m not completely up on the way this should be done, but you can do things like include extra spaces, write out the word “at” instead of @ or “dot” instead of dot etc…. or create a new temporary email address just for the purpose of communicating the first time, then give the other your real address off this blog and get rid of the temp email address.
December 29, 2008 at 6:49 pm
Just had my pre-op appointment. Found out that due to scarring from my myomectomy, I will not be able to have a vaginal hysterectomy, I have to have an abdominal. This was such a blow today. Part of me feels silly for feeling this disappointed. I think I had just gotten so hopeful for a shorter recovery, less invasive procedure, and less pain. To find out I have to go through the abdominal procedure again just sucks. BUT – only a week, and then it’s done. I never thought I’d say this, but next Monday can’t come soon enough.
December 30, 2008 at 1:59 am
Carolyn,
Bummer. You’ll get through it just fine, though. Keep your positive attitude on high alert. That counts for more than most people realize. Just take the pain killers when you need them.
January 2, 2009 at 1:17 am
Amy, Thanks for the advice about communicating with other posters. I created a dedicated email account, leahsnow(at)rocketmail(dot)com, so I can receive private messages from Demi and anyone who wants to write
January 8, 2009 at 1:20 pm
Had my hysterectomy on Monday, came home Wednesday night. Still tired, of course, but feeling really good. The surgery went well, hospital staff was fantastic. I’m looking forward to a pain free future.
I pray that all of you approaching your surgeries have speedy recoveries, and are blessed by being surrounded by friends & family to love you through the rough spots!
January 8, 2009 at 9:43 pm
Do not let the doctor who ruined your body, your health, your sex life, your family life, your career, your professional life and your social life hide behind the good doctor persona and the hospital walls that shield them.
It’s time to speak out, it’s time to expose the doctors who failed to inform you of the consequences of hysterectomy and castration. By giving your name and the name of the doctor and hospital we can smoke them out of their protected environment.
Together we can stop this from being done to another generation of women and girls.
http://hysterectomyinformation.blogspot.com/
January 9, 2009 at 9:03 am
have just read that article what about all the women who had a hyst and got there lives back? no mention of thanking the docs for the ops that went according to plan, the women who were well informed, the ones who have got there lives back. what was on that site is scary stuff dont go there if you need a hyst, do your own research. but above all be happy with your decision, the happier you are about it the better your recovery will be
January 10, 2009 at 2:36 am
Nora coffey do us a favor…get off this site..sorry to say but you are full of shit…get all your facts straight and stop scaring women. Thier are women that need this operation done to save themselves…so bug off
January 11, 2009 at 12:25 am
Uhhhhhh…..Nora….. I don’t understand where this bad commercial of yours fits in to our conversation. We were just talking about very well informed and necessary operations when you dropped a discordant bombshell in the wrong place. I don’t mean to sound insensitive to what is obviously an agonizing situation for you, but I am officially booing you off stage. Take your hate letter and solicitation to smear reputations somewhere else. It sounds like you are leading a witch hunt.
There is no room for you here.
January 11, 2009 at 1:06 am
For any woman who is considering a hysterectomy and maybe agonizing over the decision I, personally, would not waste time on the site Nora is running. I sifted through it and found a few verifiable facts, but there was a lot of outright misinformation and a very negative slant. There is whole other side with a wealth of facts that are completely missing because they are positive and uplifting and obviously don’t support her intent to terrify you. She has a vendetta. Women who get no hormone management after surgery can sometimes turn into bitter angry people. Your time and emotional energy is much better spent on a site that will give you objective information and not on one that is so bent on scaring you. She has an ax to grind. You have a life to live. Don’t give her your energy. Seek out places to look for information where people are full of hope, not hate.
January 11, 2009 at 2:27 am
Leah,
I just noticed your website on the other section I will write to you there soon, I hope all is well with you….I love what you wrote about Nora I totally agree with you. She does not belong here. She should focus on everthything you said she willl be much better off…anyhow talk you soon.
February 17, 2009 at 12:48 pm
I am 3 days post op of uterine hysterectomy.
Anyone who thinks that hysterectomy is done just because…… you are so wrong, and do NOT belong on this site.
I almost died because i thought for the past two years that my fibroids and uterus could be saved. i tried it all. had myo 2 years ago, that didnt work, this took over my life so much so, that Friday after noon at ER, i was told, its you or your uterus. It had so taken over, that my body shut down. bleeding was uncontrollable. pain was unexplainable. i couldt eat, drink,nothing. it even formed a pulmonary embolism. so i took a deep breath and said well, i have to live, and off i went into operating room. No, this is not an easy choice by no means. i cry alot because i so wanted a child, but realized that it nearly took my life.
recovery is also not easy and would not suggest it to be. but ladies listen to your own bodies, it speaks and tells u the right thing.
February 17, 2009 at 8:00 pm
Hi Gabriela,
Be kind to yourself. I am sorry that you got so sick and sorry that you had to make a choice you didn’t want to make. But it sounds like you made the right choice. I wish you a swift recovery for both your heart and spirit.
February 18, 2009 at 6:21 am
Aja, thank u.
February 23, 2009 at 5:30 am
Hi Gabriela, I am so glad to read that you are recovering and that you made the decision that had to be made. It sounds like you were very sick.
My vaginal hysterectomy is set for March 18th. I am 51 years old, still having periods every month but they have been taking a huge toll on me for about the past two years, and my fibroids were diagnosed last summer. I am grateful for the many options and chose the hysterectomy which will leave my ovaries in place. I am not having menopause yet and my mom had a late menopause (nearing 60 when she stopped having periods), so I felt that I could not go another 9 years of periods like these.
Flooding, clots, pain, more pain, exhaustion, long heavy flow that impacts every aspect of my life. Thank goodness I still am able to have a healthy and great sex life and orgasms but it’s going to be much better, I believe, without the fibroids taking such a toll.
I am a bit worried about anesthesia but will talk over my concerns with the drs.
I live alone but have family and my boyfriend planning to take turns caring for me during and after surgery. I really have an optimistic spirit so I hope that it helps. Also, I have had both a C-section and a vaginal birth and recovered well from both, so I believe this will just be another kind of surgery to recover from.
I appreciate the info here but have a tendency to panic when I read what I would term “scary” accounts, so I try not to panic. I will however do all I can to avoid osteoporosis and other possible problems after the surgery. I have been a healthy and active young-=feeling woman and I truly feel that the past two years these periods have started to wear me out. I need this!
Thanks for listening. Sorry if I rambled. I send good support to everyone here!
February 24, 2009 at 4:39 am
Hello to everyone , I don’t know you ladies but I thank you because I am to have this hysterectomy in the morning. I am nervous and Nora didn’t help. I have faith that Jesus will pull me through this storm as he’s done many others. Although, Im still a bit leary. I initially came in to have a hemorrhagic cyst removed from my right ovary only to find out that the cyst had dissolved. But I have an infection that has set causing my bowels and other things to be “glued” together (I dont quite understand that) because I’ve never had any kind of symptons of being sick. Outside of occasional pain during sex but I just thought my husband was doing a little too much. I guess I’m more like Ms. Gabi, I don’t really have a choice! And to think, when I was diagnosed in November I actually went to the doctor’s office about a chest cold. Just so happened that I had missed four menstral cycles in a row! (u telling me) Ms. Sabrina, I wish you all of God’s grace and mercy when you have your operation. Even though I’m a bit nervous, I know everything happens for a reason. And I trust in Jesus Christ to be my surgeon! This is my perspective! To me, my cysts was a blessing! BECAUSE without it I may have never known. I could have very well been walking down the street or at work and simply fell out! Then what? No one figures out what killed me until it was too late?! Thank you Jesus! Really ladies…think about it. Many of us do not have symptons so we are just strutting through life never knowing the dangers that lie within. I am only 32 and just feel so young to misout on the chance to share life with my husband! Lets be grateful that there is an answer, that there are procedures, and there are people who care and are willing to help you make it through! The Lord blessed me with my husband and his children. Even though I will never have a child of my own, I have 4 who I married and love as if I gave birth to them. To top it off, I have a beautiful grandson soon to be 1yr old and another on the way. So, whenever GOD CLOSES WINDOWS, HE DEFINITELY OPEN DOORS! Ms. Nora, you need to go to church and/or ask God to deliver you from that anger!!! (no disrespect intended) You even type angry and that cant be healthy! I will continue to keep you all in my prayers! May God continue to keep and bless you throughout your days. Ms. Sabrina, please feel free to email me! I will like very much to stay in touch and let you know what I experience in a couple of hours!
March 9, 2009 at 10:04 pm
Hi Gabreila,
I think I remeber you from the AM blog…Iam pretty sure. I had an abdominal mymomectomy Feb 07. Are you the same one on that blog. I has so many issues after that only to have the hyseterctomy within three months later.
It seems we had the same issue my doctor told me the same thing it was my uteris or me. I was very sick like you I could not eat, my blood level was very low, serve anemia. I had a really high fever and white blood count off the charts. I also has blood clots in my uteris.
I also lived with the belive that my first surgery was great and I would be able to carry a baby. Its a tough pill to swallow it does get better with time though. I had surgery may 2007 amost two years now. It was a long recovery however I can say I feel good now.
I hope you are feeling good and things to get easier for you I hope to hear from you soon.
March 9, 2009 at 10:06 pm
oh by the way..I jut had my uteris removed everything else is intact,,cervix tubes and both overis…I thougth I would mention that..
March 11, 2009 at 9:09 am
Hi,
Thanks for all your info, it was very helpful. I am scheduled on March 19th. I have a huge tumor and the doctor is not sure if it is cancer but I feel postive about what I am doing. After reading ALOT of different sites I really feel well informed and hope for the best outcome. Thanks for all your input.
March 11, 2009 at 6:14 pm
I had a laparoscopic hysterectomy two weeks ago and by the next day I felt great. The most unpleasant part of the whole procedure was the Kleen Prep the night before.
I had so many women tell me how horrible they felt and I was getting a little nervous, but I am here to say that it was the best thing that I ever did. Years of fibroid suffering was much worse than any part of the hysterectomy.
Good Luck if you are having one, think positive and you’ll do great.
March 11, 2009 at 6:57 pm
P.S.
My husband wanted me to addd this:
I forgot to say that two hours after my surgery I was hanging over the hospital sink washing my hair because I had a nose bleed during surgery. Also I was home by the next morning.
March 11, 2009 at 11:28 pm
I just wanted to wish you guys with upcoming surgeys the best of luck. I just had an abdominal hysterectomy on 2-24 compared to the pain I have been in for 9 years the pain from this surgery has been a piece of cake . I had to have one I started hemorraging from my periods (need a blood tranfusion ) I was lucky enough to refuse to be admitted to the hospital so they could do an emergency hysterectomy and I researched and researched and found that hysterectomy was best option for me for fibroids . Come to find out that pathologyreport also showed Adenomyosis
March 13, 2009 at 9:27 pm
I just had one of those robot hysterectomies, and so far, minus some bowel irritations, I havent had too much pain or problems, but….
I came out of surgery with my shoulders dislocated, my eyes swollen shut, and my mom & husband said I didnt have a neck and my head was hugely swollen. I also had a great big hematoma on the back of my head, and a deep vein blood clot in my elbow right next to my IV.
My husband popped my shoulders back in for me, and after two days they finally took me to the ER to have my eye checked as my right eye hurt horribly as if something was in it. They said I had a V cut in it, but no one knew how it happened.
They said the hematoma was from laying on a table upside down for 8 hours, as I had alot of scar tissue it took longer. They said my shoulder issues were also from laying upside down on the table for 8 hours too. I had no idea I was gonna be upside down in the first place. My arms & eye hurt way worse than the hysterectomy for sure!
Today my husband looked at the hemotoma on my head (been 9 days since surgery), and he said there is a cut on it, and it looks like they glued it. I also went to the eye doctor today to have my eye checked. They said if I had a cut it was healed. All the guy could find was some grainy dry patches on my eyes, and he said I need glasses.
I’ve had great vision till the day I went to surgery. I cant see good at all now, and I just dont know what could have happened. Its not just the eye that was cut, but the vision in my good eye is bad too.
The blood thinner shots & pills have not been fun, and from what I understand a deep vein blood clot usually happens in legs, or the groin area. In the arm is very rare. My forearm is quite swollen, and I still think there is a broken bone in there!
Anyone ever have any of these problems? Anyone know anything about the robot surgery, and being upside down? I guess they took me back about 8:30am, but I didnt get out to my family till 7pm. They all treated me pretty lame, and accused me of things, like scratching my own eye, hitting my own head, birth control causing the clot, etc… I never took birth control.
Im very sad about all this stuff. I miss being able to see.
March 14, 2009 at 5:52 pm
The fact that they are being so rude to you might mean that they are covering up the fact that the surgery didn’t go well. Maybe they are being evasive because they made some mistakes and are afraid you’ll sue them.
You are entitled to answers. I’d keep asking and get copies of the doctor’s and hospital’s records. My sister-in-law had a problem with a surgery a few years ago that also resulted in her head being grossly swollen and she found that the hospital had “lost” her records. She suspected that they were intentionally destroyed.
The eyesight problems you’ve had since are very troubling. You’ve got to assume it is related somehow to the surgery or anesthetic. It is just too coincident to believe otherwise. I wonder if you just have some swelling near your optic nerve and once it goes down, you’ll go back to normal? I have no experience with it, but you should be seen by a really good eye surgeon. Sounds like the doctor you went to didn’t have the right answers. Go with your instincts and keep searching until you find someone who can help. Your vision is too precious and catching the problem quickly might mean you can keep it from becoming permanent. You certainly don’t want it to get worse by letting too much time go by either.
March 15, 2009 at 1:33 am
Dear Leah,
Thanks for the reply. I am concerned, and will continue seeking some kind of explanation for some of the happenings, and yeah, I know they were all afreaid of being sued.
March 15, 2009 at 12:37 pm
Hi Michelle,
I had a friend who had surgery on her knee and they dropped her when moving her from one table to another when she was under. It is possible that there was some sort of accidental mishandling occurred when you were under. Document everything — photos, medical reports from your visits, conversations (dates they occurred and with whom). You may not decide to do anything, but it is better to have everything in order in case you do and to have this information at your fingertips as you continue to talk to the medical staff about your injuries.
It sounds like you may have had some sort of reaction to the anesthetic as well if you were all puffed up. I agree with Leah that you have to go with your instincts.
Good luck, and I hope your symptoms resolve soon!
March 15, 2009 at 4:10 pm
Hi Michelle,
I pray for a speedy recovery for you first and far most.I keep reading your blog and cannot beleive what you went through. Make sure everything is okay with you and go see another doctor and make sure everything is okay MOST IMPORTANT.
When you are feeling better get some answers. I totally agree with Aja. When I read your blog yesterday I thought the same thing they dropped you while you were in the OR. Your head having a bump then hematma, your shoulder and then your arm. Them telling you, you have a cut in your eye, then the eye doctor not seein it. BULLSHIT. Ask for all your records. Even find out if you have the right to see the operation if thier is tape, I am not sure if that is possible but worth a try. Msut have soem type of camera in there.
Seek answers you have a right to know…I went thorugh a law suit for my surgey I had for fibroids before my hysterctomy and it is possible to find justice. Docotrs have to take ownership of mistakes if one was done. I could be wrong however thats my gut feeling when I read you blog.
Promise me you make sure you are okay with your health first. Then go with your gut and find all the answers you need to know.
Find the strength to get better and use all the love and support you have from your famliy. Please if you have any questions or want to vent do so…….and get better
March 16, 2009 at 1:31 pm
Thanks for replys Demi & Aja. : )
I gotta tell ya, the only hope in this earth really is the Lord. He made our bodies pretty awesome to heal themselves anyway, and I know most all this stuff wiill be fine in time.
The eye thing bothers me the most because I dont know why my vision is so messed up. Its not just the eye that had a cut in it, but the other one too. Im waiting for my records to show up at my doctor’s office so I may find out something.
I started making notes of each day’s events yesterday. Thought I should do that while some things were still fresh in my memory (although the first couple days are quite a blur), LOL.
I remember reading on this thread that one of the ladies had a change in vision after her surgery. I wonder if she had the upside down thing, and how long she was in surgery? I sure would like to hear from someone that it goes back to normal after time.
Today my hair is falloing out where the hematoma is on the back of my head. Fun!
May 9, 2009 at 2:06 pm
Hi everyone, my name is Pat, I’m 52, and this is my experience. I started having a clear-colored discharge that just never stopped, and a feeling of a hot oven inside of my vagina. I went to the doctor a few times about it, but it was thought to be a part of menopause as I was peri-menopausal. After about a year of dealing with this, I called my gyno’s office and requested an estrogen cream to ease these symptoms. I was then requested to have a pelvic ultrasound done which showed elevated thickening of the uterine lining. I then had to go through an endometrial biopsy, which is an “in-office” procedure somewhat similar to a pap smear. The report came back that I had endometrial cancer (also called uterine cancer). The cancer appeared to be well contained within “pre-cancerous” cells on my uterine wall. I was then referred to a gyno-oncologist. I met with the doctor, and he recommended a full lapro-hysterectomy. He would be using the robot to do the procedure, and it was the least invasive. From the day I received the report to the day of the surgery was about one month. The surgery was scheduled for Monday, May 4th at a hospital in North Scottsdale, Arizona. So during this time, I read everything I could, including this blog. Last Monday, I went into the hospital for what would hopefully be a one-night stay. As I tend to suffer from nausea from the anesthesia, I requested Zofran be given to help with the nausea, and it worked great. I was told my surgery took about 1 ½ hours and they removed my uterus and ovaries. The robot allows the surgeon to see 3-D images and to precisely locate the cancer areas. The lymph nodes were examined and found not to have any cancerous cells, so they remain intact. I am now awaiting the final pathology report to determine if any further treatment is necessary. I should have that by Wednesday. The hospital was really great and each room has a fold-out futon for someone to stay the night. I chose to have someone stay with me, and I was glad I did. The nurse that was assigned to me was “awesome.” His name is Fred, and he was the best you could ever ask for. The only problem I had after surgery was shortly after I was placed in my room. My blood pressure started to spike (190/98). They gave me some lopressure medication, and it quickly took care of the problem, and it never returned, so I assume it may have been due to the stress of the surgery or the pain. In my case a pain pump was used, and it was quite effective in keeping my pain level well managed. The next day, the pain pump was removed mid-day, and I was well enough to go home. I’ve been home since Tuesday afternoon and was given Percocet for pain management. Tuesday through Thursday I experienced a little more pain than in the hospital, and I was taking it every 4-5 hours to manage the pain. The pain is like you “over exercised” and are sore in the abdominal area, but it’s not a pain that can’t be managed. By early Friday morning, I switched to Advil and the pain has been very manageable. I am now the proud owner of 5 one inch horizontal incisions and an altered belly button (lol). I am also displaying bruising around the belly button area of the most gorgeous purple, orange and yellow colors I ever saw. The last hurdle I had to get through was a bowel movement. I had taken stool softeners since the day I arrived home, as pain medication and anesthesia tend to stop everything. By the fourth day (Friday), I was getting a little concerned about it so last night I took some Miralax (a gentle laxative and stool softener), and this morning it did the trick. Some of these things that happened to me may seem very common for the surgery I had, but I am not someone who has a medical background, so I thought it would be helpful to mention my experience. I went out yesterday for the first time, my sister took me out to lunch, and she drove as I’m not ready to do that yet, but I know I’ll get there. My best friend in the car? A full-size pillow I keep to help me over the bumps. Thanks for letting me post my experience, and like the others before me, I hope it helps make things easier to someone who is about to go through it. If I could leave you with any advice, it would be to very “pro-active” in your care and not be intimidated to do all you can to be sure you are getting the right care for you. I’m very happy I did. Finally, to those of you who took the time to post your experiences on this forum, thank you so much, you helped more than you’ll ever know. Okay, time to carry the laundry upstairs ….. lol just kidding
May 12, 2009 at 9:01 pm
I am staring down a hysterectomy, feeling like my only other option is to do nothing- not sure.. I don’t know if this is the right thread to post this.
I don’t know how many other peri-menopausal women with large, multiple fibroids (who have been told they’ll shrink up after menopause) end up going under the knife anyway- I’d be curious to hear from them, hear about their experiences.
I’m 52, and have known about my fibroids all my adult life. When I was in my 20’s a hysterectomy was the only option. Since the fibroids never bothered me, I hung onto my equipment and have had a series of sonograms throughout the years, and an MRI about 1 1/2 years ago, when it looked like the fibroids had a growth spurt- my hormones last hurrah before menopause.
I have many and quite huge fibroids (9 cm+). I can feel them up above my belly button. Throughout the decades, my menstrual cycle was fairly normal. My last period started on November 11th and lasted through December 29, (first time it was ever that long) when I had an endometrial biopsy which removed a benign uterine polyp and stopped the bleeding & also had a DnC. My regular GYN had retired a few months earlier, so I was now in the hands of someone new- who seems really nice, caring, and intelligent. It is now May 12th. I have not had my period since November, but have had long bouts of PMS (bloating, cramps) lasting weeks at a time. I went for my annual today, and the new doctor couldn’t even take a pap smear – it was that uncomfortable/painful. I’m going for another sonogram next week. Even though I’ve been told that the fibroids would shrink up after menopause, the doctor strongly is suggesting I have a hysterectomy now- abdominal, removing the uterus, cervix too- keeping the ovaries. I’m too old and the fibroids too big for other options. I am weighing the pros and cons, mostly the cons: 6 weeks of down time and the possibility of bladder problems, scar tissue, urinary infections, other health issues. I am considering getting a 2nd doctor’s opinion- not because I don’t trust this new doctor, but because she IS new.
Any comments, thoughts appreciated..
Thanks all,
Claudia
May 30, 2009 at 12:49 am
I haven’t checked this thread in a while so I just read your post tonight. I understand your apprehension. It is a big step, one that you’ve known about for a long time, but managed to avoid until now.
I can’t supply any direct information because I didn’t have fibroids. My mother did, but hers were so painful that the choice was obvious and urgent.
I can supply this one bit of knowledge that I gained from my present hormone specialist. Leaving the ovaries could cause problems. I struggled with the decision myself, but my doctor told me that she has seen horrible cases of pms that resulted from leaving the ovaries after surgery. The ovaries are traumatized by getting a significant amount of their blood flow cut off when the uterine blood supply is tied off and their production of estrogen can begin to decline and sometimes get very erratic. This might result in mood swings, hot flashes, heart palpitations, anxiety, depression, trouble sleeping and other less common symptoms. Not all women experience these problems and you might be one of those lucky ones, but it is something to keep in mind any way. Just make sure you have a doctor who understands menopausal hormones to help you with any post surgery problems. Having the ovaries removed can result in these same symptoms, but the difference is that you can get on a patch like Vivelle Dot for a while and control the symptoms and then wean yourself off gradually if you’d rather not be on estrogen long term. It puts you, not your misbehaving ovaries, in control of the situation. It can be tricky to find the right dose, but it can be done.
I don’t know about the fibroids shrinking after menopause. Hopefully, someone else will be able to give an account of this. The other things that you mentioned being concerned about are all of course valid. I know you will spend the time to make sure you have a competent surgeon. There are some doctors who aren’t all that good at performing surgery and I think women have to pay attention to their inner voice and avoid letting someone cut them open who just gives them bad vibes. The doctor I picked was very personable and gave me detailed explanations of the surgery before hand. I had a long list of questions which she answered to my satisfaction. I managed to avoid any damage to internal organs or nerves.
I used to have a lot of bladder infections, but haven’t had any since the surgery in April 2008. I was on the patch even before the ovaries came out and have been on a reasonably steady estrogen dose since then. I also take cranberry pills and drink copious amounts of water which seems to keep my bladder flushed out. No problems so far.
Sorry I don’t have any information that exactly fits your situation, but I know you will make the right decision. I just hate that it has been forced on you this way.
Best of Luck,
June 15, 2009 at 1:48 pm
Hi everyone:
I had my surgery back on jan 7th.
I am doing great. I do not miss my period at all! Not a second. I am regular now, another HUGE bonus. I lost 9 inches off my waist!
Anyhoo. All you. Newbees out there. Sit down. Call for home delivery of food, be helpless. Do it with a smile. It is not east and your body is messed up. From the tumors that were sure sucking the life out of u, so sit down, order in, and realize this is the last time you soil the sheets, or cramp so bad you just scream. Or drop a blood clot the size of a apple! It is over!
June 20, 2009 at 10:00 pm
I would like to thank all women who are honest about sex and orgasms after a hysterectomy. I have (had) six girlfriends that had hysterectomies because of Fibroids. All I ever heard was how great they felt after the hysterectomy and how wonderful things were. They told me that they didn’t have any problems with sex and that sex was better than before. Well all six were married and their husband would talk to my husband and it appears as if they were lying to me according to their husbands. After they had the hysterectomy it was like our friendship had changed, something very different and I couldn’t put my finger on it. The reason that I know about the conversations that their husbands had with my husband is because I almost had a hysterectomy, then my husband told me about what their husband said to him. One husband told my husband that sex was like sticking his penis in a can. I choose alternative medicine and shrunk my fibroids naturally, and I lost some weight as well. Processed and fast food contributes a lot to fibroids. I look great and feel great. I am 48 and never felt better. Sex is better than before. Out of the 6 ex-friends 4 are now divorced and the full truth is coming out. The other two husbands feel as if they have to stay in marriage because of children and one of the two is having an affair. I have a master’s degree and I am back in school part time to get a PHD in Psychology. From my personal perspective, I believe that misery loves company and I also think that a hysterectomy will change a woman, and some women become very deceitful, evil and nasty. I would like to believe that before my ex-friends had the hysterectomy that they would never lie to me about something so serious. I thank all women who are honest and tell the truth about orgasms and sex after the hysterectomy. I am sure that not all women experience what my friends experienced and they have a great sex life after a hysterectomy but I am having a hard time with my medical background understanding how they can be even with HRT. Maybe they didn’t have a great sex life to begin with. I don’t know
June 22, 2009 at 7:42 pm
Hi All,
I had my surgery on March 19th and thank the good Lord it was not cancer. I had the worse case of endometriosis the doctor has ever seen. I had everything removed uretus, tube, ovaries etc. I was in the hospital 4 days and the pain was really not that bad at all…the whole time it was about a 3. During my surgery of 8 hours the doctor told me one of the tumors crushed my right ureter which she rebuild and also placed a stent in. 5 weeks later I had it removed and right after started to have fluid on my right kidney. I went for many test…finally was told to see a urologist. He saw me and said I need another surgery because of scar tissue which closed over the ureter. A tube was placed in my back to drain my kidney until I had the surgery. I underwent a 4 hour surgery had to have part of my bladder removed and a ureter re-implantment. This surgery was HELL ….pain like I have never felt and I was in the hospital for 1 week. It has been 3 weeks since the surgery and I have another stent in until it is removed mid July. Sorry to go on so long but what I need to know is has ANYONE ever had this or heard of anything like this? I would appreciate any imput. Thank you
June 27, 2009 at 4:37 pm
Denise, can’t offer any help, but good luck and keep us posted!
June 30, 2009 at 2:35 am
Hiya!
I really wish I would have come across this site before my hysty. I had to have a complete LAVH due to re-occuring dermoid cysts. In 2003 I had to have emergency surgery to remove the first one in my right ovary (10cm) because it had twisted and was cutting off circulation, causing massive pain and i was hardly able to move. I had an abdominal incision so that they may save the ovary, which they did cuz i was only 23 then. So a year later i started to have pain again with periods, went to the doc and they had spotted another cyst but just monitored it, and it did shrink and eventually disappear.
I met my now husband in 2005 and at the time was told it would be extremely difficult for me to be pregnant, and tho my hubby wanted a child he was fine with it being just the two of us(i mean, he still married me after all). Not to get too TMI, but we did have a very active sex life and did nothing in the form of birth control. I actually got pregnant in 2007, and my baby girl was born in april 2008. I had to have a c-section tho due to the previous operation. About 2 months later, i tell him i’m hurtin a bit in my right side again. He says it’s from scar tissue from the op and that he noticed i had a lot of adhesions, so he writes me a scrip and tells me to take it easy.
2 months after that in august, i went back to him because the constant pain was making me miserable. They do an ultrasound see nothing on the right side, but a 12cm dermoid cyst on the left. It overstretched my ovary so it had to be removed laparscopicly. After my birthday (also in april) i was having pain AGAIN!! not to mention i was becoming not such a nice person, tho i tried to keep myself under control i was still a nightmare. Back to the doc, another ultrasound and …WALLA!… another friggin’ cyst in the right side and it was already almost 8cm.
And here we are. I had the hysterectomy because i was so sick of constantly being in pain and my uterus, tubes, intestines and so on had lots of adhesions. I had to be referred to an gyn-oncologist and my reg doc would assist, because of all the technical issues he wanted to make sure it was preformed by somone with a lot of knowledge on the subject just in case of anything else crazy. I went in 8am monday morning (oh, btw the prep for my surgery was ridiculous and i hate that more than actual surgery) and i was knocked out by 9 and back up around 11:30. in total i was there 36 hours, so was my hubby. I was getting up by the end of the night and wasn’t too bad off, i didnt have to use the drip very much. by the next day felt better and by friday i was feeling super! i was laughing and happy, making jokes and blowing kisses….I almost saw myself again. Saturday night however, i was in such excruciating pain that i went to the e.r. they shot me with dilaudid and was sure i was gonna have to be re-opened cuz of how much pain i was in. they took x-rays and bloodwork and know what they found???>>>> NOTHING!! they said i could get admitted but i just wanted to sleep, so new scrip and home i went. I feel like my stomach is soo heavy, peeing kinda hurts like its releasing pressure, and worst of all i am back to miserable and want to just cry, but that hurts. So i called my original doc and they told me call the surgeon, i called them and they made me an appointment for wednesday. well now i’m nauseus and can not eat anything and worried. i can’t be too close to my baby cuz she might accidently hit my tummy……overall just sux and i miss friday. so i aqm going to the surgeons office tomorrow because i dont think i should wait.
sorry this is so long, i just wanted to share and hopefully something i said may help someone else. I will update as soon as i know anything. hopefully it gets fixed in office and no hospital, and then no mo dr for a while!
thanks
manda
June 30, 2009 at 10:40 am
Hi Manda,
I hope they figure out why you are having problems during your recovery ASAP and that you feel great soon!
June 30, 2009 at 11:27 am
Question: Is there anyone out there who had IBS, and had it before their hysterectomy?
Have you noticed a difference in your IBS since your surgery?
I’m 52 and have had IBS my whole life. I also have multi & large honkin fibroids, (Diagnosed in my 20’s). Latest MRI a few weeks ago shows my uterus is the size of a 5 month pregnancy.
One big one is sitting near the colon. They say those fibroids can cause constipation. This was NOT a problem with *my* IBS. Actually the opposite- frequent and sometime urgent bathroom needs.
I’m hoping this might change after the fibroids are dealt with.
Within say the past 6 years I noticed the IBS was getting worse. Doctors (Gynos as well as gastro-enterologist) have no definitive answer on the connection between IBS and hormonal changes as a woman approaches menopause.
I never really had any problems from the fibroids until this past November when my period went on for 6 weeks. I had a D&C/ endometrial biposy which removed a benign uterine polyp. Ever since then I am aware of my belly every day (bloating, pain, pressure) and one menstrual period in 5 months- a two hour flood (ick)
For years I was told hang in there, the fibroids will shrink up when you hit menopause. So, here I am (age 52) on the verge of, and I am now being urged to have abdominal hysto, because of the fibroids.
I am getting 2nd & 3rd opinions for alternative treatments to a hysto.
In an effort to gather as much info as possible before deciding, I was hoping to hear from women whose IBS was changed/worsened/improved after their fibroids/girlie parts were taken out.
Thanks in advance.
July 5, 2009 at 7:40 pm
ok, i have responded twice and both still wont show up. so, trying again.
real quick, the fever was caused by some medication used by this particular hospital to put me under. my thyroid apparently doesn’t like it. they never found out why i was in pain.
anyway, i am doin so much better now. no fever, hardley any pain, the incesions are just about healed and bending over to pick things up is no problem at all. i can’t wait to see how i feel as time goes on!
July 7, 2009 at 6:45 pm
Hello Everyone,
Whoever said mid life was going to be easy, had to be joking. From the age of 40, (I’m now 50) I have been having endless problems with my periods…prolonged and heavy, not to mention periods of tiredness that left me bereft on the sofa, backaches etc etc…..anyways – a total hysterectomy was the verdict! Out with the ovaries, fallopian tubes, cervix and uterus and of course my buddy the countless Fibroids!
Vaginally Assisted Laparscopic Surgery was on the 29th June..a 3.5 hour long celebration of the dismissal of my vital life giving organs! And then the joys of pains. I must say I have been fortunate to only suffer gas pains….agonising gas pains and the reason why I decided to write this blog.
Stupidly I came home and decided it was time to eat…my normal meals in order to put back what they took out…oohh la la..mistake number one! Eat, but eat wisely please…let your stomach take its own time in delivering to the bowels that which it is capable of disgesting without loading up your system with whatever. Eat small portions of food, which is easy to digest and stop eating early in the evening…drink lots of liquid and eat a healthy balanced diet…gas will be a thing of the past.
It’s been day number 9 for me and though tiring easy I am resting up with no pain or complications. After so many years of agony and living just half a life, I am really looking forward to better times.
Good luck to all of you who are going to have a total hysterectomy or who have had one already and in the same boat as I am.
Cheers to womanhood and the strength we have to endure!
Dianne
July 9, 2009 at 12:51 am
Hi everyone. I am so glad I found this site. Wish I had found it before I had my TAH. I was really nervous about what happens after the op, in hospital, so I have written a fair bit about that in case others are interested.
I am 40 yo married mother of 2. I had a total abdominal hysterectomy 2 weeks ago on 25 June. I have enjoyed reading everyones entries and thought I would share my hysterectomy experience too.
I have always had heavy, painful periods, however in the past year they became much worse. I had to plan car trips so that I would be able to stop at a toilet after 45 mins. I carried spare pants with me. I had to get out of bed up to 5 times a night to change pads and tampons. Even then, I still soaked pjs and bed linen. The bathroom looked like the aftermath of a massacre.
I had mentioned all this to my Dr 6 months ago during a regular pap test. She suggested I try ponstan, a period pain med. She didn’t even palpate my abdomen. The period meds were useless, so I just lived with the discomfort, relying on ibuprofen for pain and scheduled 45 min toilet visits.
A couple of months ago I was admitted to hospital overnight for an inner ear viral infection which had me totally incapacitated with vomiting, vertigo and nystagmus (eyes moving involuntarily which had the room really spinning). A routine blood test showed a low iron count. They asked me about my diet and whether I had heavy periods. Since my diet is normal, they suggested I see a gyno about the period problem. An ultrasound showed an enlarged uterus with a fibroid about the size of a tennis ball plus a 4cm cyst on an ovary.
The fibroid explained the extra symptoms I had been experiencing since my totally unrelated hospital visit. I was feeling ‘strange’ while running. I felt like my abdomen was ‘full’. I was starting to have trouble getting enough air or breathing deeply, while bent over cycling. I needed to go to the loo to wee more often. I could see my bladder bulging above my stomach when lying in bed. My period lasted longer and the pain lasted longer. I called the gyno and explained the problem and the ultrasound findings to the receptionist. She slotted me in just a few days later.
At they gyno, she had me lie on the bed, where she palpated my stomach. She said it was enlarged and about the size of a 12 wk pregnancy. She read the ultrasound report, and asked me my family situation. She asked whether I had finished having kids. My husband had a vasectomy about 8 years ago. As I expected, she recommended I have a hysterectomy; TAH since it was too big to extract via the vagina or keyhole. She would leave the ovaries if possible, remove the uterus, cyst and cervix. I wasn’t upset about the loss of the uterus. I am still not sure whether the cervix should have been removed. However I was looking forward to no more bloody periods.
4 weeks later I turned up at the hospital for the operation. The fibroid had grown at a lot. Cycling to/from work was really difficult, in the weeks before the op. I had to have regular stops to get my breath back, and made sure to have pain meds an hour before the ride home since I was in constant pain for the past 3 wks.
I was nervous about the operation, but had the support of my husband and oldest daughter. The operation experience was fine.
Post op in hospital
The first thing I remember was waking up lying on my side in recovery with the oxygen mask over my mouth and nose. They removed the mask fairly quickly and replaced with an oxygen tube which sat over my nostrils. I was wheeled in my bed back to my private hospital room, where my husband and daughter L were waiting for me. Boy was I pleased to see them. I had a sleep and an hour or so later, I felt quite good chatting to my parents, hubby and L. I was on a morphine drip, and was told to push the button whenever I needed more of a boost. To tell the truth the extra boosts of morphine didn’t give the instant relief I was hoping for! My husband told me the morphine was on a 10 min cycle and would count down for me, so that I could push as soon as 10 mins were up.
The nurse put compression stockings on my legs up to the knees. She also put sequential stockings over these, which were connected to an air pump, which regularly pumped air through tubes up my legs. These massaged the legs and kept blood from pooling. I think they did a good job, because the next day when I got out of bed I didn’t feel the least bit wobbly.
The first evening I was hungry so I begged for food. I had already eaten a couple of small chocolate bars and wanted something savoury. I was allowed sandwiches and soup. As soon as they arrived, I struggled into a more upright position and promptly felt faint and nauseas. I gave up on the idea of food until breakfast. I was able to drink just fine though, form my cycling water bottle.
I didn’t even notice I had a catheter until late evening. It was great not having to worry about going to the toilet. My mum had a hysterectomy about 25 yrs ago and she had to beg them to put in a catheter after the op, because the bladder fullness was causing such pain and she couldn’t manage to ‘go’.
Post op in hospital next day
The catheter was removed first thing in the morning and I was encouraged to get up and try to go to the loo as soon as I wanted to. 2 hours later I needed to go, so a nurse, unhooked me from the sequential stockings and helped me get to the loo. I was still in a hospital gown, was bottomless, in a fair amount of pain and hooked up to the IV/morphine drip. I was relieved to find that I produced wee with ease, tho it felt really strange. I didn’t bother waiting for the nurse, and got myself back to bed OK.
Breakfast in bed was easy for me, because my husband popped in before work to help me. I found rolling over in bed relatively easy, and preferred lying on my side with a pillow stuffed behind my back for support. Eating food off the tray was impossible in this position, so my hubby was a great help. I was starving and really enjoyed the meal.
By lunch time I found I could sit up in bed easier and found this meal a lot easier by myself. I always included fruit or fruit juice at every meal. Otherwise, I ate whatever I felt like. I have had a few gas pains but it was never much of a problem.
In the afternoon, the IV was removed, the sequential stockings were removed and I was freed from bed. I started walking around and spent most of the afternoon sitting up in the comfy chair, chatting to visitors.
My surgeon told me that they op had gone well and that the fibroid had grown at about the rate of a normal pregnancy. The uterus was enlarged to a 16 wk pregnancy size. Before the op, my tummy had a nice, rounded appearance that I would have been very proud of, had I been pregnant! After the op, my surgeon happily informed me that I had a lovely flat stomach now.
As indicated by my surgeon while lying down, my stomach is indeed nice and flat, however it’s a different story as soon as I stand up. I didn’t discover this until 5 days post op and I removed the dressing and stood in front of a mirror. Read more in the ‘muffin top’ thread on this site if you want to know more. My experience is much the same as many others who have entered a comment.
2nd day post op
I was pretty much ready to go home by now. I was weeing, and had a first BM that morning which was a relief! I had a lovely shower and washed my hair. I was walking around the hospital in my pjs. I found the chair more comfortable than bed. I watched all the news on the demise of Michael Jackson. After my afternoon visitors left, I had an hour lie down to rest before the family arrived after dinner.
There seemed to be much confusion over whether I should expect to see my surgeon again before discharge, which was written up as being the following day. She didn’t turn up and she didn’t show on the following day either, so they let me go since I was healing well and meeting all their criteria.
3rd day post op – going home!
I was actually quite enjoying my hospital stay now that I was able to get around and didn’t have to wait for nurses to do stuff for me. It was like a motel room with lovely 3 course meals all day. The nurses didn’t blink an eye at my husband and kids bringing in take away dinners for themselves or at their unconventional visiting hours. However, I was keen to get home to my family and to family stuff, and to my two lovely golden retrievers who were missing me very much.
On the drive home I held a soft pillow over my stomach for protection and tummy comfort. I held this over my tummy when we got in the house too, since our dogs were very excited at seeing me and I didn’t want one of them causing me injury.
I sat myself in the lounge in my pjs with a blanket and pillow. The dogs arranged themselves at my feet. My husband and kids sprawled on the couches. I was home
4th day post op
My husband had arranged to stay home from work on my first day home. We slept in and had a lazy day at home. I stayed in my pjs all day, and was waited on for breakfast, lunch and dinner.
From the following day, my daughter (it was school hols) and I made a daily walk to the milkbar (corner store) to buy a paper. On the first day I walked upright but very slowly! Since then, I am now in less pain and am now able to walk past the corner store and on to the park. I am even able to walk the gentler of our two dogs. I feel great and am not as tired as I expected. I don’t need a sleep during the day, but I do get a bit sore and need a sit down for a while. I am enjoying cooking new dishes. I cooked chocolate soufflé yesterday; which turned out beautifully. I will have to watch the calories tho!
2 weeks post op and I am on the anti-inflammatory meds partly due to pain (which is much improved now) but mainly due to the swelling in my muffin top (which my surgeon doesn’t understand to my bafflement). Thank goodness you guys understand me.
I am thinking about going back to work at least part time next week. I know I shouldn’t rush things but my job is sedentary (I am a desk bound engineer), and I have run out of sick pay. I will let you know how I go.
Best of luck with your experience.
July 14, 2009 at 1:29 pm
Claudia,
My situation is similar to yours and we are about the same age as well. I lived with the firoid situation for way too many years. Not wanting to get a hysterectomy!!(big mistake). As the fibrods grew they were puting pressure on my bladder and comprimising my bowel. Dr said it soon would have been blocked whcj could of killed me. Hence I also thought I had IBS due to the fibods. My uterus wa almost the size of a 6 mo pregnancy. Anyawy, I had a lap hyst and my bowels are already more regu;ar . I’m 3 weks post op. Get the hysterectomy and don’t waste any more years in discomfort. They don’t shrink despite what you here not when they ar so large. And if you don’t get rid of them it will compronise your other organs! My best wishes and prayers for you!!
July 20, 2009 at 3:13 pm
I had a hysterectomy about 6 years ago, in August 2003 after I had my son, I was only 25. I was told I would have later on had to have this because of my family sisters mother and grandmother on both sides of my family. My tubal was first and then the doctors talked me into it. I have since then gained 80 lbs and can’t seem to loose it at all.I am now weighing in at 235 I go down a lb or 2 and gain it back. I am in such a mess I am more stressed over my weight, diets dont seem to help and my life is more depressing. I love my kids more than life itself and I am tired all the time. I cant seem to catch up with them activitites are hard to keep up with. I JUST WANT TO LOOSE THIS weight and make myself more healthy. HELP someone talk to me polease!
September 19, 2009 at 4:45 pm
Hi all,
I’m posting this because this blog isn’t working very well anymore. My apologies if you’ve already received this, but I’m trying to find support for getting this blog to fully function again!
(For those of you new to this site, welcome, it has provided a great forum for those of us suffering from fibroids to find out more about fibroids and support each other. Unfortunately, it hasn’t be been functioning very well (a lot of the links are down to the other threads on this blog, among other things) and it has been getting very little traffic over the last few months. But, I’m working to see what we can do, even though we didn’t start this blog, because we haven’t heard from the founder since early 2007. If you too, find this blog helpful and want more info about our efforts or want to help, read on.)
I just wrote a long letter to wordpress.com support asking what we can do to get this blog working again… I also said I and others would be willing to pay to keep it going. I would even be willing to maintain the site if they would allow it.
If anyone else knows anything, has any ideas, or would be willing to contribute to keep it going, please let us know here.
If I get the go-ahead I’ll post back and let you know.
It really pains me to see that most of the links are broken and to see that most all the the personal histories on this site have disappeared, and that this site may not be around to provide the forum for so many of us to support each other.
When I posted on the wordpress forum, other users said it would be out of our control because the site essentially belongs to Eclectic Geek to do with as she pleases… unfortunately, if say, she died…. it seems that we should be able to do something…..
Maybe, if enough people log on to: http://support.wordpress.com/contact/
to express their concern, maybe, they would be more likely to do something.
Thanks all!
September 19, 2009 at 7:04 pm
YAY – WordPress tell’s me it has been fixed!!! (so don’t deluge WordPress with requests to fix it!!)
September 20, 2009 at 12:52 am
Paula,
Check out the book Women, Weight and Hormones by Dr. Elizabeth Vliet. She addresses the problem of weight gain in a way us ladies can understand – stubborn pounds you just can’t seem to chisel off. It isn’t always just about will power and exercise. Dr. Vliet advocates getting all the hormones checked. My guess is something is out of whack. Could be thyroid or cortisol or estrogen or something else. Even if you still have your ovaries, they could be going south on you. You’ll need to get a good doctor who can monitor what could be causing the problem. If you can get your blood levels in range, those pounds might finally start to fall off.
Best of luck to you.
October 1, 2009 at 2:54 am
Hello Readers/Contributors,
My mother will be having a hysterectomy in a few days. I was looking around for pre/post op information when I ran into this forum. Just wanted to thank geekwithfibroids.com and all contributors for sharing your knowledge and experience.
Take care all.
November 3, 2009 at 7:20 pm
Hello all,
Been reading up on the hysterectomy thing. I have always wanted kids, but decided I loved my husband enough to marry him, vasectomy and all, even though I don’t have children. I have his 2 step-children. Despite this being the case, the prospect of losing the baby-makers is a bit overwhelming! I have had 2 miscarriages, probably because of endometriosis. I had a surgery in 2001 to trim it all out, but it’s obviously back. Pain, heavy periods, and a small fibroid now taboot. They are thinking there may be some up around my pancreas, because I keep having a mild pancreatitis. Everyone is saying I will feel so much better, and that I have no choice. My hubby is wonderful, but I don’t think he understands my ambivalence. He’s convinced that all my health problems will be solved by the operation. Well, maybe some of them that are hormone-related… I’m pretty sure I’m making the right decision. Afterall, even if we could have kids, and I had one today, by the time the kid was 20 I’d be 61! Any thoughts anyone?