M.R.K.H. Support and new Facebook Page
A year ago I wouldn't have believed it were possible, but as of today, there are about 130 other girls in the world, that I have learned were born with similar conditions, just like me.
When I was 13, I was told I would most likely never meet anyone else in the world that was born like me. That was isolating and it led to years of depression for me. As I check today, there are about 130 ladies or family/friends of ladies that have been diagnosed with vaginal agenesis or what is professionally termed M.R.K.H.
What is M.R.K.H?
As found on the Genetics Home Page,
What is Mayer-Rokitansky-Küster-Hauser syndrome?
Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome is a disorder that occurs in females and mainly affects the reproductive system. This condition causes the vagina and uterus to be underdeveloped or absent. Affected women usually do not have menstrual periods due to the absent uterus. Often, the first noticeable sign of MRKH syndrome is that menstruation does not begin by age 16 (primary amenorrhea). Women with MRKH syndrome have a female chromosome pattern (46,XX) and normally functioning ovaries. They also have normal female external genitalia and normal breast and pubic hair development. Although women with this condition are usually unable to carry a pregnancy, they may be able to have children through assisted reproduction.
Women with MRKH syndrome may also have abnormalities in other parts of the body. The kidneys may be abnormally formed or positioned, or one kidney may fail to develop (unilateral renal agenesis). Affected individuals commonly develop skeletal abnormalities, particularly of the spinal bones (vertebrae). Females with MRKH syndrome may also have hearing loss or heart defects.
How common is Mayer-Rokitansky-Küster-Hauser syndrome?
MRKH syndrome affects approximately 1 in 4,500 newborn girls.
For more info: http://ghr.nlm.nih.gov/condition/maye...
About a year ago, I was set to undergo vaginal reconstructive surgery, and I began wondering if there were other women out there on the internet who might be able to help me understand my condition, and any other problems I might have, as I age.
I stumbled upon Esther Morris' Missing Vagina Monologues, and I realized I had finally met the first person in the world that was like me. It began a healing process. Then August of 2010, Tyler Clementi took his life because of his sexuality, and I thought, maybe if there are other girls out there struggling with sexual development and identity issues, they might benefit from my story. I wanted to let other girls know that no matter how bad it is, no matter how many situations they struggle with, it can get better.
I sat down and penned Bad Girl Gone Mom in about three months, and then edited it several times to publication in December. Since then, I have met women all around the world that know what I am talking about. It has been invigorating, uplifting and I cherish every one of these women who are left wondering, what is my purpose on this earth if I cannot do the one thing that men cannot do, bare children.
The fact of the matter is, there are so many things women with M.R.K.H. can do it is a shame they even question themselves, but they do. I have learned I am not the only who has dealt with depression, and suicidal thoughts. I am not the only one who became self-destructive. I am not the only one that wants a better life. I am not alone.
130 and counting
As of today, there are 130 of us on the Facebook MRKH Suport and Awareness Page. To me, that is simply thrilling.
If you know of someone who has not been able to bear children, they might be someone who is affected by M.R.K.H. (although there are many reasons why a woman might not be able to bear children).
Please let them know about this group. It is a very positive place to be for those who feel all alone and have been identified as not having a uterus, a cervix, a vagina
Also, many of us have experienced doctors who are not aware of this syndrome. If a girl is in her teens and doesn't get her period, this is a first sign that there might be a problem. Some girls can go through menses but have a blockage which can be deadly if not discovered in time. Others do not have a menstruation period because there is no uterus. Anyway, please help us get the word out to those that might need to know this. Thank you once again, for your continued support.
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