MRKH IN YOUR WORDS
Mayer Rokitansky Kuster Hauser
We have not written a medical description on our website. Instead, we asked women and people with MRKH to describe their diagnosis as it's important to know that each person with MRKH is unique. Our bodies are as diverse as our faces.
This page is continuously growing with voices - want to be part of it? Contact us on
HOW WOULD YOU DESCRIBE MRKH?
I describe MRKH as a condition usually, or a disorder. Everything externally appeared "normal", but after not starting my period at 16 and having difficulty with sex I had an ultrasound and blood tests. The results determined that I had Mayer Rokitansky Kuster Hauser Syndrome and meant I had ovaries that produced eggs, female chromosomes but internally I had a tiny non-functional remnant of a uterus, no cervix and the upper part of my internal vagina was underdeveloped meaning it was much shorter than the average womans.
HOW DID YOU FEEL WHEN YOU WERE DIAGNOSED?
I felt lonely and isolated. I felt different. I wanted a period, desperately. I felt incomplete as a woman. I felt sad and lost.
WHAT TREATMENT DID YOU GO THROUGH AFTER YOUR DIAGNOSIS?
I chose to do dilation therapy to stretch my vagina over time. I was given these white medical tubes, you start small then work your way up. I held them in for about 20 to 30 mins every morning and night for about 9 weeks. I was able to have completely normal and comfortable sex after this, partners didn't notice either!
HOW DO YOU FEEL NOW AND WHAT ADVICE WOULD YOU LIKE TO PASS ON TO ANOTHER GIRL WITH MRKH?
I feel like I have grown with MRKH rather than let it consume me. I've found beauty in my rarity and pride in my truth.
My advice would be to let yourself feel. Connect with other girls. Know that no-one can hold MRKH against you, and that you are beautiful and unique. You are no less woman, no less worthy and no less of a person. And your mind is fragile, so don't ignore it. Disclose MRKH only when you feel safe, choose treatment only when you are ready, your MRKH is yours and it's special.
Ellamae - 27