I am Tired of Hiding

While I imagine that most will continue past this post, I hope you’ll stop and read it. It contains brutal honesty and personal info; be prepared for a giant case of TMI. Most guys will probably want to scroll past, unless you’re interested in reading about genetic disorders.

As many of you know I have MRKH, also known as; congenital absence of the uterus and vagina (CAUV), genital renal ear syndrome (GRES), Müllerian agenesis, Müllerian aplasia, Müllerian dysgenesia, or Rokitansky syndrome.

In the simplest terms, MRKH means that something happened between 6 to 18 weeks in gestation that caused my reproduction organs to develop improperly. At this same time hearing, other internal organs and skeletal parts begin to form. For me this means not only did a vaginal canal and uterus not develop as expected, I have joint and spine problems, as well as being completely deaf in my right ear. I also have an enlarged kidney that rests where my uterus should be and I have the bladder of a five year old.

Why am I sharing this with you? I’m sharing this with you because I am 1 in 5,000. I want everyone to understand why Tom and I have passed the four year marriage mark and don’t have any children. I am tired of hiding.

In order for Tom and I to have a fulfilling sex life I have to use silicone dilators to create and maintain a normal vagina. In order for us to have biological children, I will have to under go IVF treatments, except that after egg retrieval and fertilization, another woman will have to carry our embryos.

Why do I share this? Because many US states have laws in place that make it practically impossible for couples like Tom and I to have children. They don’t understand how a female can have working ovaries, but not a functioning uterus.

I share this because I have sisters in the Middle East who can’t get dilators and who are forced to stretch their vaginal area through natural intercourse (very painful FYI.) These same women, if they are able to get dilators do not receive the proper instructions on their use. My sisters don’t even have access to KY Jelly or lidocaine to ease the pain of dilation.

In some places their are probably women who don’t even know they have MRKH and who are being treated horribly by their societies for being “other.”

I share my very personal condition so that you will see and hear about MRKH. So that maybe together we can help my sisters who live in stricter cultures. Maybe through my brutal honesty we can help these women get the supplies and education they need to lead healthier lives. And yes, an enjoyable healthy sex life can lead to overall health.

-Brittany A. Boone

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This entry was posted in awareness, family planning, infertility, MRKH and tagged , , , , , , , . Bookmark the permalink.

5 Responses to I am Tired of Hiding

  1. Maryam says:

    Thank you so much for sharing.

  2. So glad you are sharing. It can benefit all of us to be more aware of what others are going through. I hope it eases the burden on you and your husband to share this as well, and that your journey of growing a family runs smoothly as possible.

  3. Thank you, Brittany! This is a great post.

  4. Reblogged this on travelingeneticist and commented:
    So proud of Brittany and the entire the MRKH community. It took courage to write this post so that just maybe one person would see it and know they are no longer alone. One person doing one thing can change an entire community. You’ve got this, Brittany!

  5. creationwept says:

    Thank you for sharing. I also was born with a DSD called AIS. Keep on living out!

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