Living With MRKH
Originally Published: February 9, 2018
Revised: January 3, 2019
I’ll never forget the day when I almost peed my pants in a hospital lobby. After a technician tried and failed to perform a successful ultrasound, she ordered me to fill my bladder with 12 Dixie Cups of water and try again later. “I just can’t see anything,” she explained as she sent me away for almost two hours.
Later that afternoon, I found out the real reason why she couldn’t get a good glimpse of my uterus—I don’t have one. I am one of the many girls and women affected by Mayer-Rokitansky-Küster-Hauser syndrome, or MRKH.
Imagine if someone told you tomorrow that your body wouldn’t support a pregnancy.
All About MRKH
Named after the four doctors who discovered it, MRKH is a disorder in which babies are born with either an undeveloped or no uterus or vagina but normal external genitalia (vulvas). In some cases, this means a partially formed uterus called a “uterine remnant,” and in the most extreme cases, there is no uterus or vagina at all.
Although not many people know about MRKH, it’s actually quite common—at least 1 in 4,500 women are affected! The number is probably higher, but many go undiagnosed until their teens since MRKH patients have normal vulvas. Primary amenorrhea—the scientific term for not starting your period even though there have been other signs of puberty—is how most girls find out about their diagnosis, but other potential signs include scoliosis, uneven limbs and a missing kidney. In my case, primary amenorrhea was the main clue that I had MRKH, and an ultrasound and MRI confirmed the diagnosis. I don’t have any of the other symptoms.
Living With MRKH
There wasn’t always much that a girl or woman with MRKH could do about her diagnosis. But thanks to science, today there are plenty of ways that people like me can have vaginal intercourse and even have biological children.
One of the first steps that many MRKH patients take is creating a “neovagina,” a vagina that has been created through medical procedures. Usually, this is done through a process called “dilation”—over a period of about nine months to a year, patients spend thirty minutes a day expanding the vagina with different sized dilators (small plastic tubes). After a while, they can reduce the dilating to once a week or stop entirely if they are having regular vaginal intercourse.
This doesn’t work for everyone, however. In some cases, dilation isn’t successful, or a patient wants to take a shorter route by getting surgery to create their neovagina. Other times, some girls and women simply don’t want to create a neovagina at all, which is also a perfectly acceptable option. Patients and their health care providers work together to create a plan that’s right for their lifestyle, plans and goals.
Pregnancy is the harder hurdle to overcome. Those with MRKH can hire a surrogate to carry their child since the disorder doesn’t affect their ovaries. In recent years, uterus transplants have started to become an option, with a handful of successful surgeries, mainly in Europe, paving the way for more widespread success. Adoption is another route that women may choose.
Emotional Effects of MRKH
Besides the physical treatments, MRKH patients also have to deal with the emotional effects of their diagnosis. Imagine if someone told you tomorrow that your body wouldn’t support a pregnancy. That’s a lot to process! Doctors may refer their patients to a therapist, so they can get over the initial emotional hurdles.
The other emotional struggle that can come with MRKH is feeling left out. Those with the disorder often feel on the “outside” when their friends chat about periods, pregnancy or birth control. It’s also tough for MRKH teens to explain their situation to family members or partners. For me, it was a big relief when my friends came together to learn more about the disorder and celebrate my treatment milestones.
In the end, it’s important to remember that any girl or woman you meet could have MRKH—you would never be able to tell. So if you want to be an MRKH ally, be sensitive to the fact that everyone’s body is different, and everyone’s body is beautiful.
*Sydney Sauer is a 16-year-old contributor who lives in Ohio.
Photo by Jacob Ufkes on Unsplash
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