Pain after hysterectomy

This is my first post, so here goes. I am only just finding out about endo and adeno. After the coil, an ablation and hormone injections to deal with 'fibroids', I finally managed to push for a hysterectomy as I still had so much pelvic pain. The hysterectomy was on 19th July and it was only on my follow up on the 19th September that I was told that the operation had taken 4.5 hours to remove extensive adhesions and scar tissue. (They took my cervix but left my ovaries) The consultant described that they had found endo in my fibroids in my womb? From the description I take this to be adeno but am not sure so have asked for a copy of my notes from the hospital. I was totally unprepared for this having always just been told it was fibroids. I have since done a lot of research on in and now have loads of questions. I still have pelvic pain and bad lower back ache. I am going to ring the consultant tomorrow and get another appointment but don't want to be fobbed off with the excuse that the pain I am feeling is post op pain when I think it is the same problem come back. After reading on this forum I feel pretty certain that the pain I am feeling is endo where the surgeon didn't get it all and wonder if anyone else had had this experience post hysterectomy? I will add that my hysterectomy was abdominal and not keyhole due to previously having had a caesarian.

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  • Unfortunately the only thing that a hysterectomy will remove is the fibroids and periods. It is when the ovaries are taken too that some consultants claim this to be a 'treatment' for endo but unfortunately any residual will still remain. lf the ovaries are left then they still keep producing oestrogen to feed it and if they are removed then HRT will usually need to be given which will continue to feed it too. Additionally endo can produce its own oestrogen. You need referral to a specialist endo centre - have a look at my files for more info.

    I now have a Facebook support group with several women with endo after hysterectomy if you would like to join so we can follow through your treatment.

    facebook.com/groups/1148144...

  • Thank you. Will take a look at your files and have put in a request to join your group on Facebook

  • Hi, I had a hysterectomy in April this year and I now have more and worse pain than before. I was diagnosed with adenomyosis from a previous lap only to find the pathology showed no adenomyosis. I'm at a loss as to what I should do, I'm currently waiting for an MRI and CT scan to see if that shows anything. Let me know how you get on when you speak to your consultant xx

  • Hi both. I had a hysterectomy in Feb 2015 (TAH and BSO) and continue to suffer really bad pelvic pain every day. I've had CT and MRI and don't show anything. A further lap removed endo by ablation, and did also remove adhesions, BUT didn't put any barrier in after to stop more forming.

    I'm now with a BSGE centre trying to get help - I didn't know about them before - and used Lindles posts here, and on facebook to help me get to the right people. I'm still trying to find the right treatment, and am currently on tramadol and paragabalin which at least keep pain to a level that is just about bearable.

    Good luck to you both.

  • Hi all, thanks for your replies. It is nice to know that you are not alone! Phoned the consultant today to be told I had been discharged and in order to get back to see them I would need to get a new referral from the GP! Funnily enough post arrived after with the discharge letter which confirmed Adenomyosis and didn't mention endo. Letter said I had made a 'brilliant' recovery and did not mention that I had said I was still in pain....! After reading all the posts on here I now know to get a referral to a BSGE clinic, so doctors appointment booked for next week. Will keep you posted.

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