My journey with Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome started when I was 15 years old in Cerritos, a little town in the state of San Luis Potosi, Mexico. Unlike most, my diagnosis was not so unexpected. My sister was diagnosed with the same syndrome about 10 years before I was. Therefore, my family already had some knowledge and experience dealing with the syndrome.
After my diagnosis, they provided all the medical information I needed, but they didn’t push me to take any action right away. I was pretty upset when I got diagnosed. I didn’t know how to handle it, so I didn’t. I was in denial for a long time, about 5 years. I rarely thought or talked about it. It took me a while to accept it, and learn to love myself as I am.
At the time, I didn’t realize how important it was for me to have a role model like my sister around. While we didn’t talk about MRKH much, seeing her happy and able to achieve her personal and professional goals made me feel that I could do the same. She became my motivation when I felt down.
Dating was always difficult. I am an introvert; social situations are always awkward for me, even before my diagnosis. My family was overprotective; they were afraid I would get hurt.
I had to get out of my comfort zone, far away from my family to figure out who I was and what I wanted in life. Studying abroad helped with that. I was 21 years old when I left. Being far away gave me the strength to start dating people and talking about my condition.
I figured if things went wrong, I could always go back to Mexico, and no-one would know. However, things went much better than expected. Eventually, I realized I wanted to have vaginal sex, so I decided to start dilation treatment. I don’t like thinking of MRKH as something to be fixed but I accepted the treatment to improve my quality of life.
At the time, I looked for the support of the Rokitansky association in France. They told me how to buy the dilators and provided the contact of a specialist for the syndrome. The treatment went well. My relationship eventually ended but I kept the nice memories, and the experience.
Now I am getting closer to the second stage of this challenge, dealing with infertility. For a while, I tried to convince myself I didn’t want any children. However, working with kids made me realize I like them. In conclusion, I haven’t made up my mind about it. Right now, I am a Ph. D. student and don’t have time to take care of a child, but I haven’t discarded that option for the future. Hearing about other people’s experiences in American charity, The Beautiful MRKH Foundation, has provided useful feedback. I like keeping myself informed, so when the time arrives to decide I will be prepared. Well, that’s what I hope.
It was hard for me to write this blog because usually I am not so open about my personal life. However, I did it because community support has been fundamental to helping me with my struggles related to MRKH. Between family, friends and MRKH associations, knowing I am not alone dealing with this makes me feel stronger.
I realized most of you didn’t grow up with a big sister showing you that this diagnosis is not the end of the world (even though it feels like that sometimes). I want to be that support for anyone who needs it.