Ovaries removed rather than full hysterectomy

[ccsmith]

I’ve just seen a new endo specialist as my last one has just left. I’m stage 4 endo with bowel envolvment. I’m at the stage where I need surgery and went in thinking I need a full hysterectomy & end up on hrt. The specialist however is reluctant to do full surgery as my bowel envolvment will mean I need a resection if my bowel. He has suggested just taking out my ovaries & leaving the rest! I’ve never heard of this before but it did make sense. He’s suggested I have 6 months of Zoladex & HRT which will give us a both idea if I respond well to just having my ovaries out. I’ve previously had Zoladex for 3 months but stopped it because I became so muddled/forgetful/fatigued and last resort was just missing a car crash. However endo pain had gone! He thinks my previous consultant should of put me on hrt as well and would like to check hrt will take those symptoms away.

Anyone else had just ovaries out?

[girli1111]

Hi, I’ve had both ovaries removed, with uterus left for same reason as you ie bowel involvement/risk. My ovaries were removed on two separate ops, two years apart, both times because of large growths, endometriomas and a large dermoid. Between the two surgeries I had prostap, then later zoladex, and I do believe it’s just brand names. Had livial (hrt) first rounds but not second. Both times had some night sweats, and some day flushes, unpleasant, but worth it to stop endo lesions growing more before surgery. Mine is a fairly positive experience, I am however 48, so close to natural meno age anyway.

[ccsmith in reply to girli1111]

Thanks it’s good to hear from someone who had the recommended surgery. It sounds like it was successful for you so that’s reassuring. If I can avoid the bowel recesection I will be delighted.

Best wishes

[Hidden]

Are you being seen at a bsge centre? I've had a hysterectomy with excision of bowel endo and removal of ovaries and my understanding is that you must have the endo excised or you may well continue to have pain as the endo can produce it's own oestrogen and carry on cycling even without ovaries.

I would also strongly recommend that you get a second opinion before agreeing to have your ovaries removed. Although it might seem like an easier option surgery wise it does all sorts of horrible things to your long term physical and mental health and should absolutely be the very, very last resort.

[ccsmith in reply to Hidden]

Thanks, it’s so overwhelming to know the right answers. Yes I’m at a bsge centre & I the consultant is a endo specialist. He explained because my endo pains were minor on the Zoladex then we could get away with just the ovaries. I’ve got 6 months to decide as having Zoladex & hrt which he explained would mimic the surgery!!

The full surgery scares me as it will be obviously big. Did you end up with a colostomy or did they manage to avoid it. He said I’m a high chance of colostomy because of where my endo is on the bowel.

I just want something to help me manage life better! I’m ever 2 weeks with severe pain & bleeding or like a zombie/ struggling with medication side effects.

Thank you for your advice. This support group helps sooo much & takes that feeling away of no one getting it!

Best wishes

[Hidden]

They were able to shave the endo off my bowel so I didn't have a resection. A resection is pretty rare if you look at the stats though what you've been told does make you wonder if some centres keep the stats low by refusing to perform trickier bowel excisions. I had a large rectovaginal nodule with an obliterated POD plus I had more endo at the right adnexae sticking my bowel and uterus together at that point as well. I do feel sometimes though that they talk about removing ovaries like it's something and nothing and that couldn't be further from the truth.

bsge.org.uk/wp-content/uplo...

[Hidden]

Hi I just saw your question i understand it was 4 years ago but did you have your ovaries removed in the end? As i am currently in the same situation as you were 4 years ago and wondering how is your pain now ? many thanks if you see this message and reply xx