On December 16, 2010, a beautifully seven-months-pregnant gynecologist walked into my hospital room and diagnosed me with “the very rare Mayer-Rockitansky-Kuster-Hauser syndrome,” or MRKH. She said I was born missing my uterus and the upper two-thirds of my vagina and, because I was “abnormal,” I would never be able to have my own children. All I could think was, You bitch. How could you do this to me? My world was turned upside down. She was the worst person on the planet. How could they let a pregnant woman tell me I would never carry my own children? A million thoughts ran through my head as my mother and I left the hospital. I never went to see that doctor again.
I'd begun to notice that something was different about my body at 14, when my mother started to question our family doctor on the fact that I hadn’t gotten my period yet. My doctor brushed her off, as I am petite and having a lower weight can prevent menstruation. But the closer I got to 16, the more concerned she and the doctor became. Finally, I went for an ultrasound. This led to blood work, X-rays, chromosome testing, and multiple MRI scans. Finally, after seven months of testing and waiting and testing again, we got word that the gynecologist we had been recommended had reviewed my results and was ready to give us the news.
After my traumatic diagnosis, I switched to another highly recommended gynecologist in Halifax, Canada, who was very supportive and explained my syndrome to me, my mother and my boyfriend very clearly, even drawing us a diagram on a scrap of paper, and dumbing down the language for us to understand. Which is very necessary because this is a confusing syndrome.
It is still not known whether MRKH is a genetic condition or a random happenstance during development. Here's what little the medical professionals do know: MRKH develops in the fetus around 21 to 23 weeks of pregnancy, when the kidneys and reproductive systems are at peak development. There is a documented case study of a set of identical twins, one who developed MRKH while the other didn’t, so they assume MRKH is not genetic. (I don’t know anyone in my family who has been diagnosed with MRKH, but my grandmother and I share other genetic maladies, like scoliosis, which is also linked to MRKH.) There are no data on whether a certain population is more affected by MRKH or not. Statistics say it affects 1 in every 5,000 girls born — .02 percent.
And here's what I know: I have normal XX chromosomes, so biologically I’m female. My hormones fluctuate every 28 to 30 days just like a “normal” woman. I don’t have a period — my favorite part of having MRKH — because I have no uterus and no lining to shed every month. When I was first diagnosed, I relied on ovulation predictor kits for several months to figure out my true cycle. These work because I release eggs every month, but instead of the eggs traveling into fallopian tubes, they just disintegrate upon leaving my ovaries.
This all was, naturally, quite confusing for my fiancé. He was my new boyfriend at the time of my diagnosis and was very patient while waiting for me to be ready to talk more about what this meant for our relationship. I told him about my diagnosis through a private message on Facebook because he was impossible to get ahold of at the time, and he immediately laughed off my worries that he wouldn't want to be with me. He had a lot of questions in the beginning, mostly to do with how sex was going to work, naturally.
Yes, I can have sex. My clitoris, external genitalia, and my breasts are all normally developed, so I've always been able to get off clitorally, but vaginal sex requires from work for people with MRKH. Some women choose to use dilators to gradually stretch their vaginas, but doing it naturally just seems to work better for us. It took months to stretch my partial vagina into a comfortable “pocket” for sex, but now the sex is great. The only issue we ever have is trying to switch positions and try new things, because every new position requires us trying a few times before it is comfortable and enjoyable for me. My vagina stretches around him naturally every time we have sex. It is our little inside joke that he has a “custom-made” vagina because he is the only person I have ever had sex with, so it is molded perfectly for him.
The best part of our sex life, some people might think, is actually our biggest dilemma: I will never have a pregnancy scare, because I can never get pregnant. My fiancé and I have the choice of using in vitro fertilization and surrogacy (in which doctors fertilize my egg with his sperm and implant the embryo into a surrogate mother's womb), or adopting. IVF costs are sky-high, and most insurance companies cover only the bare minimum of the hormones required. Uninsured portions of the treatments run an estimated $20,000 to $30,000 per treatment, with no guarantee of a baby at the end. And in Nova Scotia, Canada, where we live, paying for a surrogate is illegal. A surrogate must be willing to “donate” her body and time in order for the procedure to be done.
Adoption in Nova Scotia is an estimated eight-year wait with no guarantee of being matched with a child. Adoption applications at the time of this writing are on hold in this province as well, because they are placing priority in older children, as well as Native children and African-Canadian children. They do their best to place children within their own culture and race, so they grow up in their own culture. This in turn makes it hard for Caucasian like us to sit on a waiting list with all the other eligible Caucasians in our province, as there’s a higher number of applicants. Adoption is something we have researched extensively, but our first choice for having children is definitely surrogacy, because the child will biologically be ours.
The weight of our inability to conceive is heavy, especially once we begin to marry and think about starting families, but thankfully, the online MRKH community is fantastic. The other women in the MRKH community and I share everything from test results to fertility treatment details and symptoms to sex advice. I rely on women with MRKH who are all over the world; they are my sisters.
We can bond about how hard it was in middle school, when all the other girls in our classes were giggling about tampons and pads and we just thought we were late bloomers. We can bond about the unthoughtful comments we get from women who can't comprehend what it’s like to live without a uterus. “What a sin! You aren’t a woman if you can’t be a mom.” "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: "Everyone should be neutered like you, the world is overpopulated as it is." The comments are meant to be joking and sometimes well-meaning, but they are hurtful to anyone struggling with infertility, not just those with MRKH.
My life aside from my syndrome is pretty normal. I drive a 2011 Toyota, work at a coffee shop full-time as a supervisor and have my own house. We are planning our wedding and spend our free time watching movies and traveling around our province. MRKH is a strange syndrome that I am accepting of some days and completely miserable with the next, but I am extremely grateful to have found the support that I have through the Internet and in real life with family and friends. When I'm with them, I feel like a strong, proud woman, despite my lacking lady bits.
For more of Briana's story, visit her blog or campaign page.
Photo credit: Janet Langille
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