Has anyone been officially diagnosed with adenomyosis without having a hysterectomy?

At my recent lap the consultant didn't find any endo so I asked about the possibility of having adenomyosis instead. I have read that it can be diagnosed through an MRI scan. My registrar said she would not refer me for an MRI as it would be a waste of time and the only way to diagnose adenomyosis was after a hysterectomy and studying the uterus. So she said if I thought it was that i would have to have a hysterectomy! Seems very drastic to me particularly if they then don't find any evidence of that either?? Any experiences would be appreciated x

4 Replies

  • I have been diagnosed with adenomyosis using an pelvic ultrasound at a specialist endo clinic in London. It was a doctor who did the exam, she showed me the walls of my uterus and then she flicked a switch on the scanner which then showed the vascularity and blood flow of the muscle walls which should not be visible. There it was on the front wall of my uterus which was also substantially thicker than the back wall because of the swelling from the blood. It requires a specialist to do this though. Ask for a referall to a special clinic.

  • Thanks sj that is really useful information. Did you go private for the scan or was your GP happy to refer you on NHS? I'm finding it difficult to be referred to a specialist out of my local area. My GP keeps saying the cons I'm with is an expet in pelvic pain!? But I hear lots of stories of people being diagnosed with adeno before a hysterectomy x

  • Hi I have been diagnosed with adeno after pelvic MRI. I was in hospital last year and my consultant advised I may have it. I went back to my GP who referred me through NHS right to choose to a local private hospital. Within two weeks I had an MRI and diagnosis. If you are not happy with your Dr or his hysterectomy option you can request to be referred to another consultant. Hysterectomy seems very drastic for adeno diagnosis xx

  • Hi Katt

    I was being treated for endometriosis and despite many laps, hormone treatments, etc was still suffering constant pelvic pain. My consultant referred me for an MRI scan and an area of adenomyosis was visible on there. I understand adeno is hard to diagnose and often it is only when the womb has been biopsied after the hysterectomy that many diagnosis are confirmed.

    If I was you I would be asking for an MRI before even considering having a hysterectomy which is major surgery. An MRI is not a waste of time for the patient and it will help provide you with further information about your health before making a life-changing decision.

    Good luck for the future.

    Caroline, x

You may also like...