CysticAdenomyosis

Being diagnosed with Cystic Adenomyosis helped me in so many ways, it answered so many questions. Why I was getting all of this abdominal pain, why my periods had stopped, why I was bloating so badly and why I was always hormonal!! But then my GP explained to me Adenomyosis is very common, especially in women of child bearing age (which I am). But Cystic Adenomyosis was an extremely rare form of the disease and only 46 cases since 1908 had been diagnosed worldwide. I nearly chocked on my water, I couldn’t have heard that right, right? Wrong I did hear it right. And right there in that moment |I felt like I was the only person in the world| dealing with this, no one to turn to for support, no doctor to help me who’d ever seen and successfully treated a case without having to resort to a hysterectomy.
I still feel that some days and still I feel I’ll end up having an hysterectomy because of a surgeon that hasn’t treated this before is unable to save my uterus. And now 47 will forever be my unlucky number!
#RareDisease #CysticAdenomyosis

Every time I’m laid here in crippling agony, tears streaming down my face, I just want someone to say “I know how you feel”. However with Cystic Adenomyosis I’ve yet to find anyone else with this ugly disease that can say that. I feel alone, in pain and wishing someone else could say those words. Then I realise I’m wishing this ugly disease on someone else, which I’d never dream of. I can’t win.. #CysticAdenomyosis #Adenomyosis