Endo back after ovary removal: 18 months... - Endometriosis UK

Endometriosis UK
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Endo back after ovary removal

nicolajones63
nicolajones63

18 months ago i had my ovaries removed aswell as extensive endo in various places. My doctor at the time said it wouldnt return as i wasnt going to be producing oestrogen and until now i believed her but the pain has come back in the last month with a vengeance and am now waiting for an appointment next month back with an endo specialist. Has anyone else had their ovaries removed and it has returned and can anyone suggest what action they might do next.

I was so happy being pain free but now feel like this is it for the rest of my life and im only 48

9 Replies
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Hidden
Hidden

Hello, I know it was 1 yr ago that you posted this but I’m searching through for some advice and came across your post. How are you getting on? Had your endo returned? Did you get anymore treatment?

I’m 4 weeks into my recovery after having ovaries removed due to endometriosis. I had hysterectomy in 2016 and previous to that I had lots of laparoscopies to treat endo.

Like you I’ve been told that my endo will not return now I don’t have my ovaries but after reading posts on this site I see that it appears that it can.. I’m so confused with all the info I receive from medical professionals.

Hope things have improved for you and any info from anyone experiencing this would be appreciated xx

EndoJaz
EndoJaz
in reply to Hidden

How are you feeling since the ovaries have been removed? This is an option for me. My hysterectomy didn’t cure my pain. Having another lap soon hopefully. Hyst was 2 yrs ago. Need to decide about ovaries but scared of hitting menopause! And scared of it still returning. Was told at my endo group we have to understand that we will always have endo as there is no cure which is a hard reality to face. Hope u r well today x

Hidden
Hidden
in reply to EndoJaz

Hi, thanks for your reply.. I wish I had a group I could have attended just sharing stories and tips face to face I feel may have been some support. Like you my hysterectomy didn’t stop the pain or endo, referees back to gynaecologist in May where she suggested I have my ovaries removed to stop all this pain. I agreed as I thought this would end it all .. a bit gutted to hear there are so many people talking about it returning ! I’m keeping my fingers crossed mine doesn’t.

So since my ovaries were removed 4 weeks ago I’ve been a bit up and down ... I knew I had to rest ( which I find sooooo hard) this was tricky but I managed better than I did in 2016! I’ve been tired and if I’m honest feeling a bit flat, hard to describe just no motivation or energy. Pain was ok tho not as bad as I had expected so that was a bonus although definitely the last 2 days I have been in a bit more pain and a bit uncomfortable?? Not sure why unless I’m just doing a bit to much to soon ??

I was put onto estradiol as advised by consultant?

Menopause feelings aren’t too horrendous although the have altered my sleep a bit, waking through the night with hot flushes, strange dreams and just generally finding it hard to settled on a night.

Hope I haven’t made it sound to awful, I’m managing really and hoping things start to improve as I get back to work etc

Like you I am scared stuff it returns as there’s not much left inside me that they can take away 😳

Let me know how you get on and good luck which whatever you decide x

EndoJaz
EndoJaz
in reply to Hidden

Thanks for replying. I am going to see what the lap shows then make a decision. Its awful being a woman! If you go onto Endo uk website you can see if there are any local support groups near you. I find them great as there are different speakers with all sorts of advice and just meeting up with people that understand is great. X

Hidden
Hidden
in reply to EndoJaz

Thanks I’ll have a look xx

I decided I would speak to my consultant and say if when they go in and endometriosis was present to take my ovaries during the op ( to save having to go back under again to do treatment) and if nothing was seen to leave them and we could then think about other things that could be causing the pain. She agreed. During the op she found my ovaries were ‘in a mess’ in her words and they had fused to my bowel and the whole lot had fused to my pelvic wall, ( so they were both removed) also had nodules removed though I can’t remember where she said they were as I was still in recovery and it seems a bit blurry. I’m seeing her for follow up in Feb 2020.

Even though I’m still in a bit of pain it’s nothing to what I was in so overall I’m still pleased I had them taken x

Have you got a date for your lap?

EndoJaz
EndoJaz
in reply to Hidden

No.. I have been waiting since June. On cancellation list but so is everyone else! X

Hidden
Hidden
in reply to EndoJaz

Hope you don’t wait too much longer x

Let me know how you get on. Good luck x

Hi there, from personal experience I would recommend having ovaries removed even though it has come back its nowhere near as bad as it was and the menopause symptons weren't that bad and for me being 49 I knew it would come soon anyway so I think it helped me get through it quicker. I listen to friends saying they've been going through it for years but I would say within a year I was over it.

I hope you make the right decision for you and soon get some relief

Hi there, im sorry to hear your in constant pain but hope that once youre over your op youll feel much better. It does take quite a few months to really get on top of it and the menopause symptons will go on for ages.

I saw the consultant a year last August and he agreed to do another (my 5th) laparoscopy. I finally got to the top of the waiting list this last April but unfortunately my husband had just been diagnosed with cancer so had to say I couldn't go through with it. Luckily he had extensive surgery and quickly got the all clear I then asked to go back on the waiting list but was told I had to go to the bottom of the waiting list which is now a year long so not expecting to hear anything until next May. I even put in a complaint to the hospital detailing my reasons for not going through with it but they really didn't care. My pain at the moment is manageable but it was so nice after getting my ovaries removed not having any pain at all.

I have heard some people are lucky and it doesn't come back and the fact youre on estradiol may help, I was advised not to go on anything.

Fingers crossed you feel better soon

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