Endometriosis after full hysterectomy? - Endometriosis UK

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Endometriosis after full hysterectomy?

Lauraendo
Lauraendo

Hi I was wondering if anyone has had endometriosis come back after a full hysterectomy . I have no ovaries, fallopian tubes or cervix.

9 Replies
oldestnewest

Hello

I've not had this myself. However I do know that it is completely possible and it has happened to others in this forum.

It's due to the fact endometriosis can feed itself and continue to grow without the hormones from the ovaries. And is sometimes due to the surgeon not removing any endometriosis when doing the hysterectomy.

Lauraendo
Lauraendo in reply to Christin_a

Thanks Christin. Nightmare disease isnt it. Im getting hip pain, thighs , pelvic and backache again :(

I was offered a full hysterectomy by my gyne at my follow up appointment, when I said that wouldn't cure the endo she tried to say that endo symptoms would be quashed as there's less estrogen to feed it. I pointed out it would still be there and I'd prefer excision surgery to remove the endo rather than remove a healthy organ so I'm now on waiting list for further surgery. Hysterectomy only resolves adenomyosis as that is contained in the uterus.

I'm sorry your symptoms have returned, hope you find relief!

Lauraendo
Lauraendo in reply to Missingcat

Thanks alot hun for your reply

It’s not the fact that it comes back it’s the fact that it wasn’t removed. Well certainly in my case. I had total hysterectomy over 25yrs ago. I am still in agony with period pains. It’s ridiculous really. I am having excision later in the year. I would avoid oestrogen as that feeds any Endo that is remaining. I was on hrt for20 years. It has taken a huge chunk of my life and my drs have been useless. Best wishes

Lauraendo
Lauraendo in reply to Gwen172

Thank Gwen. Anyone on Feno conti HRT?

Do not have myself but several women still have endo after a full hysterectomy. A hysterectomy is not a cure for endo. So it does still come back

Hi, this is not what you probably want to hear but, unfortunately I had a total hysterectomy and the endometriosis came back!

In July 2018 I had a total hysterectomy to remove severe endometriosis, at the time between me and my surgeon the decision was to keep my ovaries (if possible) because of my age 45. Unfortunately after only 4 months the pain was back in my pelvis and lower back. It was obviously endometriosis and my surgeon agreed, so I had more surgery last year to remove the ovaries, this was November 2019. Sadly I have to say I’m in pain again, I was really hoping that it was over and all of it removed, although I could just be feeling surgical pain as it’s only been 2 months, which I’m hoping, but you know how it feels with endo!

I hope this reply doesn’t upset you, or worry you, we are all different and suffer differently, so to hear that you also suffer pain again after everything removed, made me feel like I’m not the only one. This is just a horrible disease. I haven’t even told my husband that the pain is back, to be honest I don’t know how to tell him.

Anyway, I hope you are having a good day, and whatever is causing your pain gets sorted soon, let me know how you get on.

Positive thoughts and Big hug 🤗

Thanks for your reply. Worried got a scan mext Sat... apparently endo doesnt show up on ultra scans!x

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