Stories about: Mayer-von Rokitansky-Küster-Hauser’s Syndrome

Children’s to host MRKH conference

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.

A MRKH diagnosis can leave some young women feeling very alone

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.

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