# could really use some advice.



## SLBEL3 (Jun 1, 2000)

Hi all. I have a problem that is sort of unrelated to the whole IBS thing (well, does have some good news about it towards the end. After suffering for 6 years or more of pain and d I decided to go see my GYN. Haven't seen him in 4 years. oops. So I had a doctors appt yesterday and was informed that I needed a hysterectomy. Now All I have to do is decide weather or not to keep one ovary or none. If I keep one I will most likely still have pain when I ovulate, that sucks, but if I don't keep one I will go through surgically induced menopause which can be really bad in someone my age further down the road. I really hate making decisions like this. I honestly don't know what to do. There is a lot stacked against me either way! Especially because of my history of MS, FMS, bloodclots, and stroke. But the good news it that he said the hysterectomy may actually help me with the IBS because he thinks I may have developed some lesions and endometriosis that may have gone onto my colon and is compounding the problem. Especially since I got so much worse after haveing my appendix out last year. I am so confused it's not even funny. If any of you have had a hysterectomy at a young age I would really like your advice as to what you decided about ovaries, did you keep them and have same pain or did you have them both taken out and have other problems later? I feel like screaming right now. I don't want this decision! I've been reading up on it all and keep finding reasons to hve them both removed, but then is contradicted the next page saying at a young age you should keep at least one to prevent major problems later. Please any advice or thoughts would be appreciated.Sandi


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## Guest (Apr 27, 2001)

I haven't had a hysterectomy but I have always heard that if you can keep your ovaries, you are much better off as far as your mental well being (mood swings and hormones)! You will need to go on hormone therapy if you have them taken out. Now some people do really well with hormone therapy, then I've heard some women go from pill to pill trying to find one that works for them. This is what I've only heard so I'm not positive. Hope you can reach a decision okay. Lynne


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## Debbielee (Jun 14, 2000)

Sandi,I have ibs--fm--lyme--i am 49 now.I had a hysterectomy at 29--i had endometreousis (sp?)I kept one ovary--i did have less pain for sure--it really doesnt help with the ibs.Maybe a little, as my ibs was worse during my periods--when those where gone it was better.I am now in menapause--much easier than a normal person.I personally would advice if you are young, to keep one ovary. You dont want hormones if you can help it.Unless both ovarys have systs--i would keep at least one.If the endo has gone on to your colon--a hysterectomy wont fix that totally.All in all my hysterectomy was the best thing i did.Hope this helps.Debbie


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## weener (Aug 15, 2000)

Hi Sandi:I had a hysterectomy 3 years ago at the age of 40. I had problems with my period from fibroids, ovarian cysts & endometriosis. I had cysts on both ovaries and asked the doctor if he could save even a part of a ovary I would be happy. He couldn't guarantee anything until he operated and I was lucky enough to save part of my left ovary. I didn't want to go into menopause at such a young age. I have been fine since the operation, no pain (touch wood) and the ibs is much better. If anything I'm more ibs © now than (d). I know a friend of mine had a hysterectomy, but kept both ovaries. I guess it depends if your ovaries are affected. Yes, I still ovulate (but I don't get pain)just sore breasts and I get a little cranky. Why did your doc say that you should have both ovaries removed? Having my hysterectomy was the best thing I did. No more painful periods and weeks in bed. It gave me back my life. I would discuss the reason for having both removed with your doc. Maybe they can save part of one like they did with me.


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## Feisty (Aug 14, 2000)

Sandi,I had a "total" hysterectomy 9 years ago at the age of 42. Best thing I ever did. No more pain, no more mood swings, no more periods that lasted 3 weeks, no more bacterial uterine infections, etc. According to my hubbie, my whole "disposition" improved 150% !! Guess that says something, huh?! My Gyn. told me he would save an ovary if it looked healthy, but when he got in there, he said that both ovaries were showing signs of shutting down and their color was not the greatest, so he took everything. The uterus was 3 times normal size. I did experience hot flashes almost immediately, though. The Doc put me on Estrogen replacement. I was given Premarin----bad news is that it is a synthetic and very hard for the body to use properly. I never felt good taking it. Then I started seeing another Doctor and he suggested trying the Climara patch. That worked for me, but due to the exercising and swimming I was doing at the time along with those "glorious" tub soaks I love, they wouldn't stay stuck on me for a whole week. It was getting very expensive having to use double the amount of patches, so he switched me to Estratab. Estratab is a natural estrogen replacement. It works well for me and the only temporary side effect I have had with it is that my legs would have some water retention in them by late afternoon and evening. And, about a 10 lb. weight gain. Without Estrogen replacement, your bones become thinner, hair and skin drier, etc., not to mention the hot flashes. So, it's important to be on HRT if you do decide on a total hysterectomy.I was just told by my pharmacist that Estratab will no longer be made, but another company makes the same thing and it is called Menest. I'm on a low dose of 0.625 mg. daily.Also, please do not allow your Doctor to do your hysterectomy without having an experienced colon surgery in attendance. Since he mentioned a possibility that the colon may be affected, I wouldn't let him operate without having another one there, too. You may even want to consult another surgeon on your own for a second opinion. You mentioned you were young, so age factor can definitely play a part in determining what should or shouldn't be done at this time.Good luck to you and please keep us informed.Take care.Karen


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## moldie (Sep 25, 1999)

Hi Sandi. I find it incredible the number of women with fms who end up having hysterectomies. A lot of them due to fibroid tumors and or cysts. In an FMS Network Newsletter it noted:"At a support group meeting for fibromyalgia in Bakersfield CA, 12 out of 14 women present indicated that they had undergone surgical menopause due to severe symptoms of endometriosis."in another exerpt it noted:"78% of FMS patients in a study of menopause (done by Dr. Jack Waxmen, M.D.), had surgical removal of their uterus and ovaries. Question: Why were they having these surgeries done?"In an Endometriosis Association Report it stated: "In our first data registry results published in May 1983, 68% of a group of 365 women with endometriosis reported diarrhea, painful bowel movements, and intestinal upset. In a later series of 3,020 women with endometriosis, 79% reported these symptoms. In fact intestinal symptoms are the most frequent reported symptom in women with endometriosis along with dysmenorrhea, fatigue/exhaustion."I know that this doesn't answer your question, and I don't necessarily have the answer for you. Like many here I had to make the same painstaking decision. I went so far as to try to contact that Bakersfield fibro support group to see what their thoughts were since they were so experienced and had fibromyalgia too. Unfortunately I couldn't get ahold of anyone, and I wasn't on the web yet. I remember pacing in the waiting room trying to make a decision about it. I found pros and cons in various publishings. Although I had very painful periods ever since I began menstruating, I did not associate my painful or frequent bowel movements with the timing of my periods. In my case, endo was found quite by accident, since they couldn't find any other reason for my stooling problems and decided to explore that reason. Unfortunately they neglected to check out the fact I had been on antibiotics long-term for adult-oncet acne. Hello! All they would have had to do was to have me stop the antibiotic and treat me with an oral antifungal med. Unfortunately, this didn't happen until a couple of years later when my allergist treated me for Candida molds, which he found I was highly sensitive to. He put me on oral Diflucan and a low sugar diet, and within a few months after a few years of dealing with the painful, frequent stooling and bloating, my symptoms gradually subsided. Therefore, I probably had a hysterectomy unnecessarily, and it didn't help my stooling problem. I don't regret it though, because it is one less pain I have to deal with, and I was done with having children. I told my gyno doc to save my good ovary at the time, although he suggested removing it because ovarian cancer can be a silent killer that is often discovered after it is too late. I did not want to be thrust into menopause, nor did I want to take hormones. I felt that ovarian cancer was a chance I would take since I knew of no one in my family who had had it. (Later my mother told me that an aunt of hers had it in New York). Oh well. I may be sorry in the end, but so far it has gone all right.Hey DebbieLee, I'm 49 too! I feel a sisterhood with you now - tell me if we have all this in common: age, endo, fibro, ibs, LPNs, and WI! Do I have that right? Well, I feel a sisterhood with most of you here too, since our stories are so similar. One does have to wonder about the connection of endo, fibro, and ibs though. Seems to be a hormonal connection, but why? As far as endo, the Endometriosis Association has some startling studies on PCB contaminants and a Rhesus monkey study done at the University of Wisconsin Medical College. Apparently PCB contaminants can mimic/change some hormones and confuse the body and its functioning. It also notes a connection with Candida. I hope someone is able to put the puzzle together soon.Alice


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## Debbielee (Jun 14, 2000)

You got it right Alice Very interesting connection with the endo---never thought of that. hummmmmI expect nik will appear soon with some note worthy references on the subject.Debbie


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