Living with MRKH syndrome
in Women's Health ·
Kyle Collins86 said:Hi everyone,
I'm new to this forum, but I've actually been living with an MRKH diagnosis for about three years now. I'm from America, and I was wondering how the healthcare system works for you all? I went through what felt like a total nightmare before finally getting a definitive answer. It seems like doctors here weren't really trained to recognize this syndrome. I was quite thin and dealt with constant headaches, plus I hadn't started my period at all. When I was 17, I saw a doctor who just assumed the headaches and my weight were just part of puberty, and he told me not to worry about the lack of menstruation because it wasn't anything alarming yet. Then, when I was 18, I finally saw a gynecologist for an ultrasound, and they couldn't find my ovaries or uterus. That led to hormone tests and an MRI of my brain; once those results came back, they told me I had a brain tumor—or so they thought, though it turned out to be an enlarged pituitary gland due to Hašimotov syndrome instead. My endocrinologist treating the Hašimotov gave me Letrox, and she was pretty sure my hormones would stabilize within two months and my period would start. When that didn't happen after two months, they hospitalized me, and I spent a month in the hospital undergoing all sorts of tests. By the time I was discharged, I still felt completely lost. To make matters worse, the doctor told my parents about the MRKH diagnosis but left it up to them to tell me, which I think was pretty unprofessional. Being born without a uterus, I'm still trying to process the fact that I'm different, and I'd really love to connect with all of you. Sorry for such a long post. Best,
I've been living with this diagnosis for 18 years, and there have been many incredibly difficult moments, mostly because I didn't have the right support from my family; after the initial denial of "this happening to us," I had to watch friends and relatives start their own families while I felt like I could only engage with the idea of adoption through social services...; I guess I've somewhat processed it all in my head now, and I live with the diagnosis a bit more easily...; I found some blogs and websites online that I really wish I'd discovered sooner, just to know I wasn't alone and that all the emotions I was struggling with were perfectly normal.
http://www.beautifulyoumrkh.org/Stories.html