Support thread for those waiting for a diagnosis.

[Mindfullness4791]

To cut an extremely long story short. I'm 50, have had painful periods my whole life. The past 3 years the symptoms have been much worse, with constant pelvic pain with associated bladder and bowel issues.I had a hysterectomy a year ago for Adenomyosis and multiple Fibroids. All of my tests for Endo have come back clear. Gynae now believe I could have microscopic endo, as my pain returned very soon after starting estrogen only hrt. I am now waiting to see a bsge specialist as I am now in the same position as I was before my surgery.

It would be good to speak to others in the same position. I know what a lonely place it is xx

[Marcia71]

sorry you’re struggling. You should”d never have been put on oestrogen only hrt. As an endo or adeno sufferer combined and continuous hrt is the recommended course.

Yes the oestrogen may have unfortunately reactivated endo. And there may well have been tiny spots of endo left at hysterectomy.

A scan with someone trained to spot endo would be a good first step. All bsge centres have to have a radiologist they can refer people to for such a scan.

Hope you get answers soon. I too had endo issues after a hysterectomy and felt no one listened or understood it was even possible. I had to have 3 more surgeries to help

[Mindfullness4791 in reply to Marcia71]

Thank you for your reply. I'm so sorry to hear you still suffered after your hysterectomy. Its a nightmare.I have been referred to a bsge centre but I should imagine I have at least another year to wait. I have left my job, as it is so debilitating but then I doubt myself without the diagnosis x