Looking for an adenomyosis specialist

[Katt]

Could anyone suggest an adenomyosis specialist in the midlands please? My GP and consultant have told me i should stop obsessing about why I am in pain after a negative laparoscopy and just accept it and learn to manage it. Feel incredibly frustrated so would like a second opinion. Thanks x

[PPSN_JudyB Pelvic Pain Support Netwo]

Is your consultant a gynaecologist or a pain specialist ? are you anywhere near Leicester ? How was the adenomyosis diagnosis arrived at: by MRI ?

[electricjaws]

i'm sorry I can't help with the adenomyosis specialist but what I would like to say is (as I have been told this with certain aspects of my health) it really annoys me and personally I feel it condescending that we are told basically we have to put up with it,that must be so easy to say when they are not the ones suffering , if your gut feeling is to try to at least get the bottom of your particular health issue then you must follow your gut feeling , only when you have exhausted all possibilities and found nothing that will help your medical problem ,then is the time to try to accept it can't be sorted and then take one day at a tim but until then good luck ,

[Woodland16]

What country do you live in?

[Katt]

Thank you for your replies. I live in Staffordshire England. I have seen a consultant gynaecologist, who performed the laparoscopy as I have been treated for endometriosis for 3 years, but she could not find anything. When I was examined I was told my uterus felt large but during the lap they said it looked ok on the outside. I have done a lot of research which says that adenomyosis is not usually detected with a lap. I asked the cons if I could have an MRI as heard this is now effective in identifying adenomyosis but both cons and GP have refused as said its not that and I need to just accept it is unexplained pelvic pain. I cannot just accept this if there are still conditions that could be investigated, hence me looking for a specific specialist. I have been referred to a pain management clinic so waiting for an appointment with them, sorry for long post x

[Aisha in reply to Katt]

Hello Katt, Sorry for the late reply to your letter. I myself suffered from Endometriosis for many years. When they said it had finally cleared up I was glad but I still continued having Abdo pains, most of the Gynae doctors said there was nothing wrong with me and that I was imagining my pains! My Laparoscopy didn't show up anything. I was then referred to another Gynae doctor, to cut a long story short, I ended up having a hysterectomy and when the Pathology report came back it said they found I had Adenomyosis which is something that grows on the muscle of the Womb! An MRI will show it up and the only way of removing it is by having a Hysterectomy, my pains went after that but of course I lost the chance of having Children. Love Aisha xx

[Anuba]

I recently had artery embolisation for my adenomyosis ( you have to see a radiologist for this procedure which is normally used for fibroids but can help adeno too) . You cant see adenomyosis properly ifrom a laparoscopy and only real way to see it is with MRI....only way I got properly diagnosed as they thought I had a fibroid but I had adenomyosis......Goodluck