Niki Taylor, Freelance Writer and Researcher

August 19, 2008

Revealing My Dirty Secrets?

My secrets aren’t really dirty. Nothing immoral or illegal. They’re just personal medical details I don’t like to tell about myself. One the one hand, I want to be private and professional, but on the other hand, as a writer, I want to write about myself. Writers are narcissists that way. Actually, ten years ago, I did write about my medical condition as a confused, exhilarated, and scared twentysomething at

www.obgyn.net/women/women.asp?page=/women/articles/comfort/comfort008

 

The gist of the piece is I have Mayer Rokitansky Kuster Hauser Syndrome(quite a mouthful) or more simply MRKH. More details are in the above essay “MRKH Madness“, but basically, I was born with an incomplete uterus, no cervix, and a very short vagina. I’ve never had a period and can not have a child unless I use a gestational surrogate or adopt. What I’ve learned over the years is that the condition is not as important as how I react to it. In “MRKH Madness”, I relayed how I developed anxiety disorder including obsessive compulsive disorder and phobias. I discussed how I overcame the anxiety through therapy and Prozac. So to sound like a cheesy entertainment show, where am I now? I am still on Prozac and have started taken another medication Buspar. I still have anxiety and have chosen to be single and childfree.

Another reason I like to write about this “uncomfortable to talk about condition” is for my fellow MRKH sisters. Since this is a rare condition, there is not much known about MRKH in mainstream medical fields. It is not unusual that many medical professionals have never heard of it. So not only is the diagnosis devastating(especially during the fragile teen years), we often feel alone and freakish.

Here comes the Internet to empower us with not only knowledge of MRKH but with connections to other women with the condition. There are email groups for MRKH women where we can talk about MRKH-related matters such as surgeries, various medical problems, and relationships. It’s Sex and the City for the MRKH set. There are women from teens to menopausal from all over the world including the United States, Canada, England, and Australia. Women have gotten together for meetups, and there is an annual conference in Boston.

I get further justification for writing about this on the Internet when I hear from MRKH women who read “MRKH Madness” as their first online MRKH piece. If I’m lucky enough, maybe someone will read this as their online introduction to MRKH and see the light at the end of the tunnel. To my MRKH sisters, you rock.

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