Adenomyosis NI

[chronicpaingirl]

Stage 4 IDE/RVE, multiple laps, now feeling a different kind of pain for past 2 years and believe it is likely to be adenomyosis based on symptoms.

Is there anyone with adeno who has found a consultant in Northern Ireland (NI) who knows about adenomyosis? Or even what tests I could be asking for? General gynae refused any tests or possibly of hysterectomy due to my age (33) and the Trust not scheduling any gynae surgeries at the minute. Only option was Mirena IUD (which I already have) and mini pill (which I took for a year and never again, turned out I have progesterone intolerance).

Having to go privately with Benenden thanks to the length of the waiting lists and just looking for some guidance.

Thanks!

[Thecraftyadder]

I'm in the south (not great service here) but I got referred for an internal ultrasound which I had last summer, partly to see if I had adenomyosis as well because they can measure the thickness of the lining of your womb. (I don't have it, 'just' DIE, endometrioma and frozen pelvis ) I also understand adeno changes the shape of your womb to a globe so that would be visualised I'd assume.

Maybe see if you can get an ultrasound done as a first step.

[Victoria_Sponge]

Hi there. Am in NI as well. I had no idea I had endo until MRI picked it up. Doctor initially referred me for a ‘routine’ ultrasound on NHS. I knew it was bad, so was grateful I had Benenden to push things through a bit faster. Ultrasound didn’t pick up endo or adenomyosis but MRI did!

Have been on Zoladex but it’s not working. Seeing consultant next week so will let you know if I can get a hysterectomy(hoping that will make a big difference).

VicSponge x