Living with MRKH syndrome
in Women's Health ·
fadedbear22 said:Hi 🙂
How are you doing? What's going on in your world?
(Just thought I'd stir the pot a little—maybe someone else needs some info or just someone to talk to.)
Hey everyone,
I'm new here, but I've actually been living with an MRKH diagnosis for about three years now. I'm from the US, and I was wondering how the healthcare system works for you all? Honestly, getting my final diagnosis felt like walking through hell. It seems like doctors over here aren't really trained to recognize this syndrome at all. I was quite thin and dealt with constant headaches, plus I hadn't started my period. When I was 17, I saw a doctor who basically told me the headaches and weight were just part of puberty, and that not having a period wasn't anything to worry about yet—nothing alarming, I guess. Then, when I finally went to a gynecologist at 18 for an ultrasound, 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 straight up that I had a brain tumor—well, not exactly, but that's how it went down. Turns out it wasn't a tumor, but rather an enlarged pituitary gland due to Hašimotov. The endocrinologist treating my Hašimotov put me on Letrox, thinking my hormones would stabilize in two months and my period would finally start. When that didn't happen after two months... well, things escalated. I ended up being hospitalized for a month, running through endless tests. By the time I was discharged, I was still completely lost. To make matters worse, the doctor told my parents about the MRKH diagnosis and left it up to them to tell me—which, in my opinion, felt pretty unprofessional. I was born without a uterus, and I'm still kind of processing the fact that I'm different. I'd love to stay in touch with you all. Sorry for the long vent. Best,