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a question for the ladies

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Ulcerative Colitis
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Posted 6/10/2011 1:49 AM (GMT 0)
Ok, My colitis showed up a month after I started on the pill. (almost 20 years ago). 3 years ago, I was put back on the pill and within 5 days was in the worst flare of my life. I know it is no coincidence. So, I am having issues with my cycle and breakthrough bleeding. I am considering having a hysterectomy because the issues are so bad. I have been on progesterone (Bioidentical) for 12 days out of the month and it seems to help. I would like to get bioidentical hormone replacement. I was wondering if anyone has had a hysterectomy with UC and if your colitis got better, worse or no change. And if anyone had done bioidentical hormone replacement-and if it helped or hurt your colitis. Thank you all for you input.
Posted 6/10/2011 2:27 AM (GMT 0)
Funny my UC showed up 10 years ago when my hormones changed due to peri-menopause, bleeding both vag. and rectal, a very bad time in my life. Had to get a transfusion due to blood loss. Earlier years I could never take the pill because it caused bleeding.

Why did you start back on the pill? One of the 5 GYN's I consulted with put me on the pill to stop the bleeding but it made things way worse and yeah she and all the others wanted me to have a hysterectomy. I finally found a good doctor who found the fibroid causing the bleeding and he removed it. Cured... but the UC stuck around.

Sorry I can't answer about hormone replacement since I kept all my parts.
Posted 6/10/2011 8:16 AM (GMT 0)
I had a hysterectomy 4 years after diagnosis when I was 38. I was also put on HRT, oral estrogen for many years then switched to the soy-derived patch.

I wouldn't say it made my flares worse, but I did have endometriosis, so the more steady hormones made a huge difference in that aspect. At least I didn't have the ups and downs monthly regarding my period/UC.

Now, a few years back, I decided to go off the patch and I ended up with a horrific flare where I bled the first time in 14 years. I'm very inclined to almost guarantee the hot flashes and hormone wonkiness influenced the flare.

To me, if you need a hysterectomy, go for it. Having periods and flares were hell for me, so my perception is very subjective.

q
Posted 6/10/2011 1:34 PM (GMT 0)
They put me back on the pill for heavy bleeding, excessive cramping, blood clots and mid cycle spotting. Also, very irregular cycles. I am not currently on the pill. I am on 12 days of progesterone (bioidentical) and it does seem to help a little. I would love to get a hysterectomy, but am worried it will make my UC worse. I can live like this, but I would be really upset if I lived like this for 5 more years and then decided to get they surgery and everything was great afterwards. A wasted 5 years of feeling yucky. Just trying to get all the information I can.
Posted 6/10/2011 3:07 PM (GMT 0)
If you are considering a hysterectomy, how about just getting a uterine ablation? This will reduce the amount of bleeding you experience every month. You will not be able to get pregnant, but you will still keep your ovaries, which I think is an important consideration when you're only 35.
Posted 6/10/2011 4:23 PM (GMT 0)
I guess I should update my signature. I am 38, but still pretty young, I agree. I have been advised not to have an ablation because the uterus lies very close to the colon. if something goes wrong, it could be a problem. In addition, the ablation is no guarantee that it will help my issues for the long haul. I don't know, I think my next move is to discuss testing to see if there is a hormonal imbalance and then seeing if the bio-identical replacement helps. I wish this was easy and there was an agreement among my docs as to what the best course of action is. It is really hard when everyone disagrees. My gi is totally against any surgery. My OB suggests surgery, but will do whatever I want. So confusing.
Posted 6/10/2011 5:40 PM (GMT 0)
They put me back on the pill for heavy bleeding, excessive cramping, blood clots and mid cycle spotting. Also, very irregular cycles

This sounds very like what I went through and it turned out to be a fibroid that was difficult to detect although not that small. The pill made my heavy bleeding worse if that were possible and I ended up in the hospital for a transfusion. I went to 5 OBY-GYN's before one of them found it. I don't want to sound cynical but really believe the reason every single OBY/GYN suggested a hysterectomy is because they would profit by surgery. I, however, wanted to find the problem not just remove a body part because it was "suspected" to cause the problem.
Posted 6/11/2011 3:09 AM (GMT 0)
How did they finally find it? I was wondering what test to ask for???
Posted 6/11/2011 3:32 AM (GMT 0)
I had ALL the tests from various docs including ultrasound and something else I can't remember the name of and nothing was found until the 5th doctor found it manually in an office exam. Honestly all it takes is a good doctor.
Well that and my bull-headedness about not wanting a hysterectomy unless someone could tell me WHY and not just "well let's see if this works".

Ablation therapy was mentioned to me also but was not appealing.

I'm not telling you not to get a hysterectomy. All my friends who had one are very happy with their lives. I am just a person who wants truth not guesses and if surgery is required I'll do it if it is necessary and not just a theory or a paycheck.

If you live in Delaware I'll email my doctors name if he's still practicing (it was 10 years ago).
Posted 6/12/2011 2:36 AM (GMT 0)
I live in Cincinnati. I am just having sooooo many issues, and I never feel good. I am leaning towards the surgery. I figure if I get that out of the way and can get the hormone replacement stable at the levels that I feel pretty decent at UC wise, then my quality of life will improve because I am only worrying about the UC. Call in my OB?GYN on mnnday to see what we can do.
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