Sofie

My mom and sister got their periods at age 11 and 12, so naturally I was expecting a period when I reached that age. When at 13/14 I still hadn’t gotten my period, my mom and I started worrying a bit. Whenever I would go to the doctor for something, we would also always mention my lack of a period. We always got the same answer: “it’s nothing to worry about at this age - you are probably just a late bloomer.”

At 15 I started doing my own research because I got more and more worried. I found an article about MRKH and was terrified but convinced myself it couldn’t be that. It wasn’t until right before I turned 18 and I had a new (female) doctor, that I was taken seriously. She said to not worry but made sure I got tests done and was referred to the gynecologist department at a hospital. Here I was diagnosed with MRKH. It came as a complete shock, as I had been told by a previous gynecologist that it was something else. As soon as I heard “MRKH” I heard nothing else of what the gynecologist said. I already knew what it was. I felt my whole world falling apart. My biggest dream, for as long as I can remember, has always been to become a mom and experience pregnancy.

They were shocked that we were shocked because they thought we had been told it could be a possibility, so they made sure a sex therapist could see me same day. She talked to my mom and I and then just me. We talked about how I was feeling, and she told me about dilation and asked whether I wanted to start dilation that day or wait a bit. I wanted to get started right away. I wanted to “get it over with”. Probably not the right mindset for starting dilation. Dilation has had its ups and downs since then. I now dilate through sex with my boyfriend or alone. I had regular appointments with her where we both talked about how I was doing and checked up on dilation. She also had other MRKH patients, so she understood what I was going through.

I have been struggling with my mental health since I was very young, and this diagnosis made it so much worse. The day after diagnosis, my closest group of friends skipped school to be with me. I am so thankful for that. Within the first few days, I had found support groups on Facebook. It helped me a lot to see that there were others out there like me. Not even a year after diagnosis, I went on a weekend-trip to London, UK, to meet a group of about 20 other MRKH’ers. It was the most incredible experience to meet other MRKH’ers. Not having to explain yourself because they already understood. We talked about dilation as if it was a regular thing. I will never forget this experience or the people I met that weekend. In the summer of 2020, I met another MRKH’er here in Denmark. It’s been so nice to find an MRKH’er so close to me! She’s typically the one I turn to, when I have MRKH-related struggles.

In 2018 I posted a “coming-out with my diagnosis” post on my Instagram. It gave me such confidence to share this with all my friends and family - AND THE RESPONSE I GOT!! They were all telling me how strong I was for sharing my story. With my mental health, I often feel like no one is on my team, but when I posted that, I felt so much love and support. In March of 2021 I decided to share my story on TikTok to advocate and educate on our diagnosis. People were so kind, supporting, and curious. In May of 2021 I went viral and quickly I connected with other MRKH’ers. One of them was MRKH Stars’ founder Vics. I was invited to join MRKH Stars as a writer and on the TikTok team and I of course said yes! MRKH Stars was exactly what I needed when I was first diagnosed, and I am so glad to be part of the team.

Now I am trying to pay attention to my mental health, letting myself take breaks without feeling guilty, pursuing my hobbies, eating better, and exercising. MRKH will be something I will be working through my whole life. I don’t think I’ll ever fully accept it, and that’s okay. I will just need to work on focusing on the positive things it has brought me, e.g., the amazing community.