Who knew that just four little letters can change someone’s life.
When I was 11, my mom told me about how I was born with a severely underdeveloped uterus and vagina so during my surgery when I was 6, my uterus had to be removed and my vagina was created using my colon. She never told me a specific name for this condition because she herself didn’t know it. Growing up, I always dodged the questions or conversations around periods and puberty because I couldn’t relate to my friends and peers. It was hard to hear everyone else talking about their periods when I knew that I’d never have one. For six years, I had never hear or met anyone who was like me so I just accepted that I was the only with this unnamed condition.
Fast forward to March of 2021. Due to airline issues and other health challenges, I was referred to the best children’s hospital in my state to get established with a team of doctors who could care for all of my medical needs. I met with four different providers on the same day and one of them was a gynecologist who asked me what I knew about my reproductive anatomy and health. I told her everything I knew but never mentioned an actual diagnosis name. The doctor noticed that and after I finished, she commended my knowledge and self-awareness and that’s when she mentioned those four little letters. She explained how I was born with something called MKRH and that was why my uterus and vagina were underdeveloped. She then told me about an online resource called Beautiful You MRKH. At first, hearing and receiving the diagnosis name didn’t really change my life at all since I’d know about the way my body was for a while.
However a couple of weeks after that appointment, I decided to look up the what Beautiful You was, found their website, and started reading the blogposts they had. As I read, the tears rolled down my face. The words that I was reading looked like something that would’ve been written in my own diary. I had never hear of anyone who shared my struggles with infertility and now I was ready people’s stories which were like a mirror reflecting my own hardships.
After that, I began searching the internet and social media for anything and everything related to MRKH. That was when I came upon the MRKH Stars Instagram page. I followed the account for a little while and looked forward to every post until one day, I reached out to them asking to start my advocacy journey. The rest is now history. It’s funny how those four little letters opened up my eyes to a whole community that I didn’t even know existed.
The isolation and loneliness that I felt is what motivates me to continue the work I’m doing on Stars. My goal is to make sure that no one diagnosed with MRKH is alone in their struggles and to show them that though our journey may be extremely difficult, it doesn’t make it any less precious and beautiful.