Endometriosis after a sub total hysterectomy

Hi

I was diagnosed with endometriosis over 10 years ago, 8 years ago decided my best option was to have a hysterectomy I was 46 years old and was not going to have any children at this age. My gynaecologist said he would decide exactly what needed yo be taken out during the surgery which I agreed too. Turned out he left my ovaries and cervix as he said these didn't seem to be effected by the endometriosis and at my age then didn't want me going into menopause. 1 and half years later the pain returned as bad as it was pre surgery. How I wish he had taken out my ovaries! I have over the years been on various courses of zoladex which really worked. But I couldn't stay on this for ever do had yo keep taking breaks from it. 3 years ago got early stages of breast cancer so when I returned to see the gynaecologist although I could continue with zoladex he suggested HRT too but this wasn't possible because if the breast cancer. I was at a cant move on situation. I try and get by with painkillers and the pain only happens sporadically now but when it does its bad! I also have bleeding which is something new does anyone else experience bleeding after a sub total hysterectomy? I am now 53 and keep trying to hold out for natural menopause but no signs yet! My advice if anyone decides on a hysterectomy is insist they take your ovaries at the same time it saves on having the repeated pain afterwards! I certainly wish I had but at the time didn't know enough about the condition to insist myself!

4 Replies

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  • Hi Jan

    I am so sorry you are going through such a rough time :(

    The problem with endometriosis though is once you've got it, you've got it. Even if you had had your ovaries removed, the chances are it would have found a way back; when your ovaries are taken away prematurely the body compensates by producing estrogen (albeit in minute amounts) from elsewhere.

    Doctors have got to stop offering hysterectomy as a 'cure' for endometriosis full stop. It may give a period of relief but it will almost always come back.

    You need to have that bleeding checked out - my initial suspicion is that the endo has built up on or around your cervix and it's that that's bleeding but I'm not a doctor.

    Sending lots of love from somebody else living on painkillers until the natural menopause kicks in

    C xxxxx

  • Hi chrissie

    Thanks for your reply I will def get the bleeding checked out. Thank god for painkillers eh?!

  • Oh yes! :)

  • Thank you for the advice re: removal of ovaries, should I be facing this option. I am so sorry to hear about all of your health problems and hope your menopause comes soon.

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