Hello Ms. Joanna Coles and Fellow Staff At Cosmopolitan Magazine,
I have been a loyal reader for several years, and was born with Mayer-Rockitansky-Kuster-Hauser Syndrome, usually shortened to MRKH. My syndrome affects 1 in every 5000 women born around the world. I was born with no uterus, one normal ovary, and only the lower 1/3 of my vagina. I have normal exterior sexual characteristics associated with puberty. The syndrome is not usually detected because of these normal characteristics, until, at the age of 15 or 16, you are questioning why you still haven't had a period when everyone else has. After ultrasounds, blood work, MRIs, and sometimes CT scans, a general practitioner or gynecologist confirms the organs that are malformed/absent and gives you your diagnosis.
As you can imagine, the shock and horror of having no normal sex and not being able to have your own children are always at the forefront of my mind. I was diagnosed on December 16, 2010. A vagina is created either by dilation, slow penetration from a male partner if he is willing to assist, or by surgery. I was fortunate enough to have the lower 1/3 of my vagina, and my boyfriend at the time (who I am still with today) was very helpful and more than willing to help me stretch out and lengthen my smaller-than-normal (read: tighter) vagina. And even though I am missing my actual cervix, I still have some cervical cells and create cervical fluids just like anyone else when sexually aroused. Here is a diagram I did with PAINT to show a normal reproductive system compared to my own.
I have been a loyal reader for several years, and was born with Mayer-Rockitansky-Kuster-Hauser Syndrome, usually shortened to MRKH. My syndrome affects 1 in every 5000 women born around the world. I was born with no uterus, one normal ovary, and only the lower 1/3 of my vagina. I have normal exterior sexual characteristics associated with puberty. The syndrome is not usually detected because of these normal characteristics, until, at the age of 15 or 16, you are questioning why you still haven't had a period when everyone else has. After ultrasounds, blood work, MRIs, and sometimes CT scans, a general practitioner or gynecologist confirms the organs that are malformed/absent and gives you your diagnosis.
As you can imagine, the shock and horror of having no normal sex and not being able to have your own children are always at the forefront of my mind. I was diagnosed on December 16, 2010. A vagina is created either by dilation, slow penetration from a male partner if he is willing to assist, or by surgery. I was fortunate enough to have the lower 1/3 of my vagina, and my boyfriend at the time (who I am still with today) was very helpful and more than willing to help me stretch out and lengthen my smaller-than-normal (read: tighter) vagina. And even though I am missing my actual cervix, I still have some cervical cells and create cervical fluids just like anyone else when sexually aroused. Here is a diagram I did with PAINT to show a normal reproductive system compared to my own.
MRKH is sometimes accompanied by spinal malformations, kidney problems, and hearing problems. Personally, I have scoliosis, which is a twisted, S-shaped spine, and a malformation in my tailbone. I also have two kidneys, but they are both on my right side, separate and fully functioning, while my second ovary is up where my left kidney should be. The doctors have informed me that the reason for this is that somehow during development, where your kidneys and reproductive organs usually trade places, some of mine "went the wrong way" and some didn't form at all.
The most difficult thing with MRKH is the social stigma that is attached to your uterus, vagina and babies, which are all supposed to equal womanhood. And this is not so. I am a woman based on my chromosome tests, which show perfect XX chromosomes, and my hormone levels, which fluctuate every 29-30 days just as a "regular" woman's does. I receive a lot of nasty, un-thoughtful comments as other women around me try to comprehend what it is like to live without a uterus, from "You lucky bitch! I wish I didn't have to bleed every month!", "So you can't have babies, right? That's ok, you don't need them. Just adopt!" and even "You should be spayed or neutered anyways, the world is overpopulated as it is." The comments are meant to be joking and well-meaning, but are really hurtful to anyone struggling with infertility, not just those with MRKH.
I have also developed a lot of amazing connections around the world with other women who have MRKH syndrome. We are a sisterhood, being a shoulder to cry on and an ear lent when the rest of the world just doesn't seem to understand.
I know I am able to have children through surrogacy, although it is an extremely expensive procedure, and is not a guarantee. I can also adopt, although our first choice is definitely surrogacy.
MRKH was recently featured on an episode of The Doctors, where a friend of mine was featured and spoke about her own personal experiences with the syndrome. I am hoping to have your help, Cosmo, to bring awareness to other women and to the world about those living with MRKH and infertility in general, and show that just because we are missing some of our "normal" woman bits, we are still Fun, Fearless Females!
Thank you for reading!
I hope to hear back from you soon.
Sincerely yours,
Briana
The most difficult thing with MRKH is the social stigma that is attached to your uterus, vagina and babies, which are all supposed to equal womanhood. And this is not so. I am a woman based on my chromosome tests, which show perfect XX chromosomes, and my hormone levels, which fluctuate every 29-30 days just as a "regular" woman's does. I receive a lot of nasty, un-thoughtful comments as other women around me try to comprehend what it is like to live without a uterus, from "You lucky bitch! I wish I didn't have to bleed every month!", "So you can't have babies, right? That's ok, you don't need them. Just adopt!" and even "You should be spayed or neutered anyways, the world is overpopulated as it is." The comments are meant to be joking and well-meaning, but are really hurtful to anyone struggling with infertility, not just those with MRKH.
I have also developed a lot of amazing connections around the world with other women who have MRKH syndrome. We are a sisterhood, being a shoulder to cry on and an ear lent when the rest of the world just doesn't seem to understand.
I know I am able to have children through surrogacy, although it is an extremely expensive procedure, and is not a guarantee. I can also adopt, although our first choice is definitely surrogacy.
MRKH was recently featured on an episode of The Doctors, where a friend of mine was featured and spoke about her own personal experiences with the syndrome. I am hoping to have your help, Cosmo, to bring awareness to other women and to the world about those living with MRKH and infertility in general, and show that just because we are missing some of our "normal" woman bits, we are still Fun, Fearless Females!
Thank you for reading!
I hope to hear back from you soon.
Sincerely yours,
Briana