During pregnancy, a baby’s reproductive system may not finish developing in the mother’s uterus. When this happens she may be born without a vagina and have other abnormal reproductive organs, the most common being Mayer-von Rokitansky-Küster-Hauser’s Syndrome (MRKH). It’s not unusual for the condition to go undiagnosed until puberty. The Center for Young Women’s Health at Children’s Hospital Boston offers free monthly chats for young women with MRKH, as well as host an annual conference where families whose lives have been affected by MRKH can come together, bond and learn about the condition. This year’s conference is happening on October 22. (Click here for details.)
In the following blog post, a three-time conference attendee describes how the experience has changed her understanding of MRKH and ultimately her views on life.
I could never have anticipated the profound effect MRKH would have on my life. At 17, I considered myself happy, confident and strong. But when I was diagnosed with MRKH all of those feelings were challenged. Suddenly, the only dream that seemed to matter was the dream of having a family.
Learning the reality of my diagnosis—I would never be pregnant because I was born without a vagina and uterus—devastated me. It shattered my confidence, robbed me of my happiness and put my strength to the ultimate test. It’s easy to be strong when you can’t imagine a life different from what you’ve come to expect; that strength becomes harder to muster when faced with an unknown future. After diagnosis I struggled to cope with something I didn’t understand and couldn’t fix.
After that MRKH became my identity. I started believing that nobody could truly know me unless they knew I had MRKH. However, the people that really mattered to me saw things differently. Not only did they know about my condition, but they also saw things in me I couldn’t recognize back then— that every other part of me was more important than my MRKH.
One of the greatest things my parents ever did for me was seek out more MRKH information than my local doctor could give us. They always said that knowledge was power. When you have knowledge, they said, you regain the power to explore your options and cope with the situation ahead. Having searched the Internet, my Mam discovered the Center for Young Women’s Health at Children’s Hospital Boston. She saw a notice about an upcoming MRKH conference and flew to Boston. At the time she didn’t know what to expect, but knew she needed to know more about MRKH.
What she discovered was overwhelming. Although I wasn’t there, it was clear when she returned how much it helped her. She talked passionately about the brilliance of the medical team in Boston and every time she spoke about the conference she had a new light in her eyes. She was inspired by the confidence of the conference attendees, impressed by the way the Boston team shared its wealth of MRKH knowledge and moved by the compassion she received as a mother to a girl with MRKH.
The following year, I attended my first conference (I’ve been to three since.) Looking back on the experience makes me quite emotional because it shows me how far I’ve come.
The first year I went I was incredibly nervous but the moment I heard Dr. Laufer’s presentation I understood why my Mam had spoken so highly of the conference. It was the first time anyone had told me everything I needed to know about MRKH. It was honest and empowering. Although it was a lot to take in, I finally felt like I had been given all of the information I needed to deal with the uncertainty I had been living with. That first conference gave me some of my power back and with each additional conference I attended I left with more and more power.
After the presentation we broke up into support groups. I was still quite nervous and didn’t have much to share, but it helped to listen. One of the real beauties of the conference is the sense that it’s okay to just listen and learn. Everything can be taken at your own pace.
By the time I attended my third conference, I felt like I had truly learned to cope with MRKH. I had just completed dilator treatment and knew that I could finally put it aside. I walked into the conference with a smile on my face, feeling like I had more to offer than I had to take. Of course I will always learn something new at the conferences, and be inspired by the strength of the other girls who attend, but I finally felt like I had overcome MRKH and I couldn’t wait to share that with my peers.
When I was first diagnosed with MRKH, I spoke a lot about perspective. Perspective to me meant prioritizing the way I felt about MRKH above all else. I now realize the true meaning of perspective: MRKH does not have power over me and it will never be the most important aspect of my personality.
If I could speak to my younger self, I would share a few secrets I learned about living with MRKH.
- Part of being strong comes from allowing yourself to grieve MRKH. It is okay to not be okay.
- Allow yourself to accept the help you need to cope with diagnosis.
- Even though you’re upset about your MRKH, don’t forget to appreciate the good times; those moments will eventually build up to outweigh the sadness.
After five years of living with MRKH, I am happier than ever. Although it took a lot of personal work to get there, I will never forget the support of my family, friends, teachers and incredible medical team at Children’s. Their dedication to girls with MRKH—and the invaluable conference they hold—is truly changing lives and I thank them for it.