RV Endo - Hysterectomy /Ovaries query

[vixstar84]

Hi All,

I'm after some feedback please. Is there anyone who has had a hysterectomy (kept ovaries), and found their endo has grown back to point of really suffering again and then gone back to have your ovaries out and noticed any improvement? I need a lap either way but wondering about ovaries as torn on this.

I obvs know you can still get endo once ovaries are out. I'm just trying to decide my next step as my pain and discomfort is insane and relentless and I've started ending up in hospital again. I have Stage IV endo (mainly RV) and just started back on Prostap.

I'm just hoping for some feedback whether positive or negative. TIA! x

[dawntildusk]

hi vixstar.

i had a hyster with removal of everything except one ovary. at the same time they also did excision of stage 4 endo. it was a hard surgery but it has given me my life back. i am mindful that it is just a matter of time but for now its good. so far my remaining ovary is still going but was told it is likely to fail within 5 years. x

[vixstar84 in reply to dawntildusk]

Hello, thanks for replying. I'm so pleased it has given you your life back. I know what you mean about it being a hard decision though. I had my womb, cervix and tubes out and excision of endo in Mar 2018 and kept ovaries but still have such severe cyclical symptoms and RV pain which has been getting worse last few months. For me having my ovaries out is almost harder decision than having my hysterectomy which I know sounds weird but it's almost more final x

[dawntildusk in reply to vixstar84]

oh yes its the hardest thing to come to terms with. they had planned on taking both of mine but during the op thought my left ovary was disease free. i was upset at first as i just wanted it all out to the reduce the chances of endo coming back again but am glad now they left it. i was dubios as mine had returned twice in two years.

[2020mw]

Hi, I can't speak to keeping ovaries, as mine were taken at time of excision surgery and hyster. I can empathize with the difficulty in making the decision though. I fought to keep mine but in the end they had to go as they were beyond saving. Surgical menopause has been incredibly challenging to manage, but 5 years in I can happily say I have zero endo pain and mostly I am living a fairly normal life on estrogen replacement therapy. I am one of the success stories.

[Tothefuture in reply to 2020mw]

Hi, yes I had hysterectomy too, I opted for ovaries out- but yes, very big decision . Hysterectomy was fine, I woke with no pain (which is all similar symptoms to endo ) and have never looked back since . 6 months on I think I may have found a balance in my hrt . Happy days but I did find surgical menopause hard - although my GP was not confident in prescribing hrt and wanted to give me anti depresents instead - I insisted on hrt . So go didn’t help the situation . I wish you well and hope you can confidently make your decisions .

[Jraid]

Hi Vixstar,

What did you decide? I am 2 & 1/2 years post total hysterectomy for stage 4 endometriosis and adenomyosis and have been in pain since 7 weeks post hysterectomy.

Had a lap just over a year ago and the endo has grown back. I was very upset that it had grown back and that my consultant hadn’t removed my ovaries as we had discussed this and I had consented.

He said due to my age 42 at the time he thought the cons of removing my ovaries out weighed the pros.

I am now about to start on Gonapeptyl injections this Monday. I am dreading this but if it does make me pain free I will be pushing for an oophorectomy!

I’d be interested in how you git on whichever way you decided to proceed?

Xx