Does anyone have adenymyosis as well as endo?

Had a lap in June this year and had endo removed and my bowel and uterus separated. After suffering the pain of the coil coming out after 4 weeks post op, and being in agony I got seen my a different consultant who was excellent and discovered I also have adenymyosis. I'm on prostap injections now and her until I go in for my op on 4 th February for a hysterectomy, leaving only my ovaries there. I'm 27 so this is still all a shock. Looking for some info, how long off after the op, etc how they find life now if they have both or just the adenymyosis?

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  • Hi :)

    Many of us on here have adenomyosis as well as endo. they kind of go hand in hand.

    27 is awfully young to be getting a hysterectomy, and presumably you've thought about it all long and hard, but the good news is that you won't have adenomyosis anymore once your womb is out. If it was that causing the majority of your pain you're going to be a lot better off.

    Out of interest, how did they diagnose the adenomyosis?

    C x

  • They picked up a bulky uterus on the lap but did nothing about it, I went to see a specialist consultant who told me after doing an internal ultrasound that it is def adenymyosis. The hormonal tablets don't work unfortunately and the last resort was prostap and hrt before having hysterectomy. Will be glad to be pain free as I have started to get pain again this month xx

  • I was told I had possible adenomyosis, but have to wait for the stuff removed in my op to be biopsied to confirm it!

  • Ive been told by my endo specialist consultant that you can't be told you have adenomyosis until its biopsied until after a hysterctomy they can only suspect and that in most cases they should try and keep your uterus in until at least 40 because of all the other problems it can lead to. Please make sure you have seen an endo specialist before you make this decision as lots of gynaes suggest it as they dont know what else to do.

    Lots of ladies say it can take six months to fully recover. You are not allowed to lift or do strenuous activities for at least six weeks.

    Good luckxxx

  • Hiya,

    Yep seen an endo specialist and now I'm seeing another specialist,an excellent consultant in wales.he actually showed me and explained to me exactly what adenmyosis actually is and I def do have it. Having the lap didn't show it as it can't see inside the walls of the uterus just the outside and surrounding areas which did show endo.

    Def haven't gone into this lightly due to my age but its thw last resort :(

  • Oh so glad you are seeing a specialist so many ladies on here aren't.

    My gynae thinks i have adeno too and prob need an early hysterectomy also as zoladex was brilliant but cant be on that forever. Other stuff doesnt work.

    Im 30 but want children. I wish all the answers were simple and we knew how effective our actions would be.

    Wish you all the luck in the worldxxx

  • Thanks Hun.ive been on prostap injections for months now but like u say can't be on that forever! I'm Lucky that I've had 2 beautiful children and don't plan on anymore now.im also a childminder so still see children and have them round me all time :)

    Just need to perm sort problems out.good luck to you to in future :) xx

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