Comments on: Uterine fibroid symptoms (not my idea of fun)

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By: Serenity

Serenity — Sat, 30 Jan 2010 23:33:46 +0000

Serenity Says:
January 25, 2010 at 11:23 pm
Hi!
I stumbled upon this blog after a visit from my OB/GYN in December 2009. She had been my GYN for apprx 10 years! I put my trust into her ability to handle my medical needs. for years she monitored my HPV stats (human Papilloma Virus). I too am a medical provider (pediatrics).. I have to say TRUST YOUR GUT (literally).. After my pre op consultation with her, i left with so many unanswered questions and many of my concerns not met. She was about to sccedule me for a Myomectomy with “possible HYSTORECTOMY”. Normal consent you say …huh? Well it doesnt have to be. I left her office in shock. Im 34 years old and she could not tell me 100% if I would come out of surgery an intact women.. Despite our years of previous conversation for my ‘back up plan”(sperm donor). Her response was ‘ I wont know for sure until I open you up”
We discussed the shape of the fibriod (on a pendullum or stalk), she would clamp the stalk to cut off the blood supply. We discussed donating my blood prior to surgey because the uterus is very vascualr and bleeding is likely. she couldnt confirm the # of fibriods. “I wont know till I open you up”. Uhh…dont you have and MRI? I questined why she didnt ask for my films. She also could not confirm that she would use sugical glue instead of staples.. She told me a women of my size typically won’t do well with sugical glue. Althought this was my most superficial question, i think she forgot that I too was a practitioner I have adult patients that are post op, GYN , twice my size ( Im 200lbs) and return to thier bed with surgical glue. Her answers didnt sit right with me. She cant take my uterus! So I found this blog while searching for answers. I read the term “RE”. Not until the blog i heard about REPRODUCTIVE ENDOCRINOLOGISTS. These are GYN”S or OB/GYN’s that specialize in procedures to maintain your fertility. REMINDER Iam a NURSE PRACTITIONER with a masters degree. i have never came across this specialty. Through Divine intervintion (long story) I found Dr. Stanley West . He removed my Fibroid 1 big ole honey dew melon size fibroid. made several cuts to my uterus (fibroid too big for the typical incision) removed the fibroid and reconstucted my uterus. According the Dr West if i was ready i can have children in 4 months! Did I tell you he is a “microsurgeon” . I cry because of this divine intervention. The fibriod shape was nothing like my GYN described. I dont know what MRI report she read. Dr West read my MRI report whle drawing pictures. I donated no blood . he said that will cause me to be anemic and cause othe problems for surgery. At St vincents hospital they use a cell saver. My blood loss during sugery is collected and i guess cleaned, and put right back in my IV. I saw it upon awakening from anesthesia. it wasnt alot either. Oh yeah Im home healing sore not really pain. dont get me wrong Im exhausted! But… I got my GLUE to a bikini line cut you cant even see! My sugical opening is closed in 5 layers! Nothing is gonna break free! In this case the glue is cosmetic. His final stitch is right under the skin. This is not the typical closure of GYN thats why they prefer staples its Quick! They go back to thier office or go delivery another baby.. Iwas the only obligation on his work schedule. He had all the time he needed to reconstruct and stitch it back. Please go to a RE!!!!!!!! My sugical consent read “MYOMECTOMY NO HYSTERECTOMY” brought me to tears!

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By: Susan

Susan — Thu, 17 Dec 2009 02:55:37 +0000

Hi, I’m new here and just began having problems this past summer when the heavy bleeding/clots started. I found out I had a 5 cm fibroid and am trying bc pills to control the bleeding. Because estrogen in the past gave me migraines and progestin (progesterone?) whatever is in the low-dose pills made me nearly certifiably insane, I opted to try Yaz. So far it’s been great (only on my 3rd month) but my question is this – suddenly this month (3 days ago to be exact) I began breakthrough bleeding which is as heavy as a period (while on Yaz….not heavy like before Yaz). Could this be from the fibroid dissolving? there are just a few tiny clots, nothing like the ones before I started taking Yaz. I don’t like taking it because of the risks, but I can’t see living w/ the bleeding the way it was. I have three children and can’t be confined to my house for 2 weeks a month because if I move the wrong way I will gush. Anyone else had this experience w/ breakthrough bleeding and if it is the fibroid dissolving? Thanks so much — hang in there, all of you!

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By: Celine

Celine — Thu, 12 Nov 2009 00:08:33 +0000

Hi Is, Les and Amy. I tried to fight the broid, too. I tried herbal supplements for a few months but my broid was too big so I had surgery and got my life back. But, if you can stand the flooding and you can see a difference with your herbal supplements and nutritional changes you should keep detailed records so you can share with other women. It would be incredible if that was a treatment.
I researched a lot, read articles and tried Indole=3=carbinol, a cancer fighting compound that also controls irregular cell growths like fibroids. The compound is found in brocoli. It didn’t do anything for me but I didn’t take it long enough either. Also be careful with websites that promise you that this wonderpill will get rid off the fibroids. Those are scam web sites that only want your money. I agree with Is that you should eat healthy. Definitely! I also agree with Amy that removing the fibroid is a good thing. You get your life back. No more double pads and running to the bathrooms every half hour and all that. I wish they would do more research and actually find a non-invasive treatment for fibroids.
Celine.
PS: I definitely recommend taking a daily multivitamin, iron and vitamin c if you are flooding.

By: Amy

Amy — Wed, 11 Nov 2009 22:14:20 +0000

Is – For what it’s worth, I think I had a period in March… but it is on again off again…I only took BC pills once for about a week and stopped because of really bad migraines. I hardly ever eat beef, and have chicken or pork a couple of times a week. As for HRT: estradiol via the vivelle dot patch (which my hormone doc insists is okay – he says the hormones that were supposed to cause problems are taken orally and include other hormones like premarin etc.) I first had my hormones tested when I was about 45 and even though I was having regular periods my estrogen was really low – actually lower than a man’s! So that is why I started on the estrogen patch. It really made a huge difference for my hot flashes, my memory, and my hair stopped falling out. I also stopped having migraines and to my surprise, even some chest pains that I would have regulary (I would go to the ER only to be sent back home). The reason I don’t take them all the time anymore is due to the news about them (just in case) but really, it’s a pain to have to remember to change the patches and then I’m left with adhesive on my stomach that doesn’t want to come off. ..and I just hate having to depend on these darned things to feel better.

I don’t remember if I had fibroids then… so I sometimes wonder if the hormone might have caused the fibroids…. I think they did increase the size of my breasts (which was NOT welcome!) although that could have been due to some weight I put on.

Interesting about the flight related bleeding.. never had that! But at least you found the tea. I never had any discharge except after the endometrial ablation, but that eventually went away. Again, I’m really thankful I had that done and can’t stress enough the toll anemia takes on our bodies… so please consider it . If you haven’t, find the page about endometrial ablations. You’ll see I’m not a fan of the newer types of ablations (novasure, thermachoice, etc.) Best.

By: Is

Is — Mon, 09 Nov 2009 18:59:26 +0000

Amy–What type of fibroid do you have? How long since your last period? What type of HRT? Did you take BC Pills when young? Do you eat conventional meat? I think there is something to the artificial things we have ingested over the years that cause the fibroids. And yes stress is a biggy. Have you considered trying “natural” hormonal balance? There is a good md/nd Dr. Susan Lark that has written a book “Hormone Revolution” and she has had good results with here patients on a variety of HRT, naturally and bio-identical. Yes the “wait until menopause” is uncertain and frustrating. I just keep trying to find as much info as possible and do to my poor experiences with conventional doctors, I will probably try everything on mine own naturally. I’m not having incontinence, constipation, pain–just flooding with the monthly cycle and some “discharge” during the month. Also, everytime I fly, when I land I get a mini gush of blood, sometimes more if it is closer to my period and also if I get stressed I bleed mid cycle. I was really stressed in May and was non-stop bleeding with flooding off and on when I tried the nettle/red raspberry leaf infusion that Susan Weed recommends and it worked. No mid cycle flooding, I can actually go through the month with just a panty liner.
Clair–the discharge is usually a semi-mucous clear-yellowish-pinkish color, smells a little like ammonium and usually about 1 teaspoon to 1 tablespoon in volume several times a day. I didn’t know what this was and came across a mention of it on obgyn.net where I have found quite a bit of info on fibroids, but yet still the doctors couldn’t elaborate on the discharge and I refuse to get stressed with the fear tactics that I believe the industry practices.

I am most happy that we have choices and we can make our own decision for our health. I hope for the day when all women of the world will have their own say of their bodies. I wish everyone well on their journey. Peace

By: Clair

Clair — Mon, 09 Nov 2009 12:43:56 +0000

Question for IS…. what is “fibroid discharge?”

By: Amy

Amy — Sun, 08 Nov 2009 20:58:42 +0000

Hi Is, fortunately, I am less symptomatic than I was, but not due to shrinkage. What took care of the bleeding was a hysteroscopic endometrial ablation (using a roller ball and a D & C) – which I highly recommend over other types of ablations.

There are several things I don’t like about the “wait until menopause” approach:
1. no guarantee when that will happen, meanwhile the fibroids may continue to grow, you become (more) anemic with everything that brings (I feel your whole body is affected and it takes a long time to recover from anemia), not to mention the worry, the mess, other symtoms etc.

2. shrinkage assumes the woman is not going to use hormone replacement therapy, and while many women now opt to stay away from hormones now, some women who have especially bad menopausal symptoms may benefit from taking them – at least for a year or two – as I have chosen to do on and off.

3. while it is possible that one won’t bleed as much following menopause (after all, I didn’t bleed horribly the entire month, just during my period), it doesn’t mean the other symptoms go away. They can still cause some incontinence, pain during intercourse, back pain, etc. My fibroid also makes me look a lot fatter than I really am (if it weren’t for my fibroids, my pants size would be 14 instead of 18.

I still want to look around for a doc who will do the myo… but I still want to do some research.. (of course, meanwhile, I’m just getting older!)

Find out how much fibroids actually shrink… I read somewhere that they actually shrink very little. Mine haven’t shrunk at all, even when I was off of HRT for almost a year.

So, if your main complaint is the bleeding, definitely look into the endo ablation. Best to you!

By: Is

Is — Sat, 07 Nov 2009 23:53:21 +0000

Hi Amy,

? for you, as you are menopausal have the fibroid(s) not shrunk? Does “it” still cause bleeding? Why is a myomectomy or abalation not available to you? Do you have any fibroid discharge? I’m 50 and was hoping for menopause to take care of mine, but I’m still menstruating monthly–actually flooding and holding off severe anemia with loads of supplements.

By: Amy

Amy — Sat, 07 Nov 2009 22:55:22 +0000

Hi Les,
You know, after reading this blog for many years, I’ve come to the conclusion that it’s better to just get the fibroid dealt with traditionally. Maybe herbs or other things can prevent them in the first place, but to get rid of them, I doubt it. The only thing that shrinks them at all are some hormones with a lot of side effects for some people – and usually these are given to prepare women for laparascopic surgery. More often than not, at least with the women who post here, it seems that women just waste time trying to deal with these things naturally and meanwhile, they waste precious reproductive time, the fibroid(s) keep growing, they become severely anemic, or as in my case, I’m now considered to be too old to get the darned things removed because I’m in menopause.

Have you seen the page here that has to do with heavy bleeding? http://blog.geekwithfibroids.com/2007/02/02/how-are-you-managing-your-heavy-menstrual-bleeding/ Best to you.

By: Les

Les — Thu, 05 Nov 2009 01:40:43 +0000

I am so glad to find this site. Why is it that most of the medical sites rarely use the word clots. They say “heavy bleeding”- not the same thing – I had to really search to find other women using words like: “looks like a piece of liver” or “Monster clots”. I seem to be quite fortunate in that my two 18+ month old fibroids are very small and my monster clotting usually comes around the end of my period and rarely lasts more than a day. I’m never woozy or weak and so far not spotting in between periods. I have been on the pill for most of the last 20 years (I’m 43 today!!) and maybe that is why it is under control – for now. I am a little weary about any changes. I learned the hard way (twice!) to always be prepared for the gush. I usually wear a pad up to 5 days before and after my period. Thank goodness pads have come a long way since I was last wearing them regularly in the 80s.

Question: has anybody gone the herbal route? I’ve tried some of the “meno-herbs” Wild Yam, red clover, vitex stuff. But I’ve had my hormone levels tested and I am still not peri-menopausal yet, eventhough I have some of the classic symptoms – I’m guessing from the fibroids

By: Amy

Amy — Thu, 29 Oct 2009 06:20:23 +0000

Linda, try asking on this page: http://blog.geekwithfibroids.com/2006/09/21/how-are-you-feeling-after-your-uterine-fibroid-embolization/
best of luck to you, and none at all to your alien!