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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7 Comments »

  1. Hi Niki, I clicked over to your blog from the WAHM Quality Rater thread. I love that you use the term “childfree;” I am as well. Funny that we both follow a thread on a forum called “Work At Home Mom” – I was beginning to wonder if I was the only Work At Home Non-Mom…

    Enjoyable blog, take care! – Deb

    Comment by Sniffy — August 30, 2008 @ 1:32 am | Reply

  2. Thanks for writing, Deb. I will use any site to further working at home!

    Niki

    Comment by dharma63 — August 30, 2008 @ 5:22 pm | Reply

  3. Hi Niki, Hope you’re well.

    I stumbled across your “MRKH Madness” piece, and I loved it. I also have MRKH. I’ve just turned 19, and I was diagnosed with this at the age of 17. It was such a huge shock, and to be honest I don’t think I’ve fully come to terms with it. I still get very emotional.

    As I was reading your article, I started to get tearful. I just want you to know how much it touched me. It really inspired me, and Im so grateful you wrote about it. I know I shouldn’t be ashamed. I should strive to be the best I can be, and with a story like yours I know I can do anything I put my mind to too.

    I was thinking of writing a book. Or at the very least creating a website, to help others, just like you did with your article.

    I would love it if you could write me back. Or email me. And maybe I could ask you a few questions.

    Thank you so much. I hope to hear from you.

    Christina

    Comment by Christina — December 29, 2008 @ 12:01 am | Reply

  4. hey Nikki! Of all places, I didn’t think to look for you here and happened to stumble upon your blog just by tagging one of my entries MRKH. I’m a member of some of the yahoo groups you’re in.

    Laura N

    Comment by sweetemotion — February 4, 2009 @ 12:10 am | Reply

  5. Hello, im 16 and was diagnosed with MRKH last month.
    My name is Niki as well!
    Im very glad that i stumbled across this because this whole time i felt like the only one in Canada with this.
    Thank you so much for showing me that i can get through this.

    Comment by Niki — May 25, 2009 @ 9:53 pm | Reply

  6. […] written by a woman who also has MRKH which I referred to in http://nikianntaylor.com/2008/08/19/revealing-my-dirty-secrets/ Her blog is very funny and tender as she prepares for marriage and gestational surrogacy.  Even […]

    Pingback by A Fellow MRKH Sister « Niki Taylor, Freelance Writer and Researcher — June 27, 2009 @ 4:51 pm | Reply

  7. hi we just in the process of discovering my gran daughter has mrkh we are waiting for scans to see what see has got and what see has’t we know at the moment she has no external opening reading some of these stories makes me and her mum feel not as alone

    Comment by pauline wyper — November 4, 2009 @ 1:24 pm | Reply


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