Adenomyosis

Hi three years ago my 15 Years of severe pelvic pain due to endometriosis came to me getting a full hysterectomy at the age of 35 yrs. After surgery the surgeon wrote to me to say my womb was badly damaged due to a type of endometriosis called adenomyosis. For the last three years my pain has got so bad and no painkillers help. Has anyone on this know of or have this condition?

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  • I have adenomyosis, it's when the endometrium lining the womb grows into the outer muscle layer causing damage, inflammation and intense pain.

    If you've had a full hysterectomy then it can't be adeno causing you pain anymore as it only grows in the womb - which has been removed.

    If you still had your ovaries I'd say it was likely that you have endometriosis left in the abdominal cavity that's been stimulated by oestrogen.

    If you don't it could be scar tissue, adhesions or something else post menopausal?

    Sorry I don't have any other advice but it definitely isn't adenomyosis causing your trouble anymore.

  • Yes full hysterectomy but I'm going through tests as it can spread to lining of bowel which I never knew until was recently in hospital. If serious if can cause damage to all muscle wall lining front and back, so that's why I was seeing if anyone had anything similar. It's horrible as I thought hysterectomy solved all but not that simple it seems x

  • That's dreadful, you poor thing, my gynae has been marketing a hyst as a cure all for me!! If it's any use - I did have an op last year to remove a 'nodule' of endo from my bowel wall with partial resection. It didn't give me much relief as the main problem - womb - is still there.. Having an op next year to remove adenomyoma nodule from the womb. All much of a muchness isn't it.

    Will probably be having hyst in a few yrs too. So sorry it hasn't been the solution for you x

  • Hi - adenomyosis is a condition inside the uterus that affects the uterus lining whereas endometriosis is thought to be bits of the lining of the uterus that get outside by menstrual blood backing up the tubes and being transformed into endometriosis by an impaired immune system that turns it into a disease process. The jury is still out as to the origin of adenomyosis and whether it has the same root as endo -perhaps being there from birth. But it is a fact that then often co-exist. Your adenomyosis was removed with your uterus so it is impossible for you to have this now but unfortunately if all endo is not removed after a hysterectomy it can continue to grow and cause pain.. Did you take HRT and can you describe your symptoms and are they on one side more than the other? Do you know where your endo was and whether it was all removed?

  • Hi always have more pain left side and the surgeon just said full womb and surrounding was badly damaged with it. My symptoms go on for miles lol I am a law university student and I have been asked by go to give up due to my daily pain but I refuse to let this condition win. I was put on hrt for a 3 month trial due my age had stop x

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