Last week, the Wake Forest Institute of Regenerative Medicine, known for the first-ever lab-grown bladder transplants, announced its latest, Frankenstein-esque feat: four fully functioning vaginas, made from the patients’ own cells and implanted. The patients in question are Mexican teenagers, ages 13 to 18, and their successful transplants called attention to a not-as-rare-as-you-would-think congenital malformation affecting one in 5,000 women: called Mayer-Rokitansky-Küster-Hauser syndrome, or MRKHS. Women with MRKHS are born missing some or all of their internal sex organs, a condition that is hard to picture and harder to talk about. (Although The Daily Mail manages.) The Cut enlisted Laura, a 26-year-old who runs a MRKH peer support group for some frank talk about Wake Forest’s breakthrough, as well as life with and without a vagina.
When did you find out you didn’t have a vagina?
I was diagnosed when I was 16 years old because I hadn’t gotten my period but the rest of my body was fully developed. My pediatrician didn’t know what was going on and sent me to a radiologist so I could get an MRI. They scanned and realized I missing my uterus, and through a gynecological exam, also missing the vaginal canal. From there I was sent to an MRKH specialist.
One of the reasons MRKHS gets sensationalized in the news, I think, is that we use the word “vagina” so loosely that the uninitiated can only imagine a Barbie blank space.
That’s the thing. MRKH is basically a genetic mutation, and the genes responsible for external sex organs and internal one are different. So the external ones develop completely normally, everything’s fine and functions the right way, that mutation causes the absence of the internal sex organs. It’s important to know that MRKH can present itself in many different ways, actually. There are some cases where women are actually born with a vaginal canal but no uterus, some women have skeletal issues or kidney problems.
How did it feel to be diagnosed?
I was so young, at the time it was confusing and devastating. To find out a major life change at such a young age and know you are 1 in 5,000, it makes you feel like, “Why did this happen to me?” They presented it to me in medical terms with some treatment options, including dilation treatment and surgical treatment, and my options for having kids, surrogacy and adoption, and they discouraged me from doing anything right away. The problem is that a lot of doctors don’t provide the emotional support you need before talking about physical treatment, and sometimes women will shy away from going to the doctor as a result. It’s a lot to take in and to understand. I ended up not seeing another doctor for about eight years. By the time I was 24 I was ready to confront it, see another doctor, and talk about treatment options.
What changed in between when you were 16 and 24?
My boyfriend. I had dated before and I had talked about my condition in my other relationships, but I didn’t really feel like I wanted to do the operation until I was with someone serious because I knew it was going to be a long recovery process.
What’s dating with MRKHS like?
It definitely makes you come out of your comfort zone. At first it was hard because you’re revealing your most personal secret with someone maybe you just met and you don’t know how your sexual relationship is going to work yet. But it helps weed out the good ones from the bad ones. In the end it was kind of a resource.
Which treatment did you go with?
I ended up deciding to get the surgical procedure, called the McIndoe procedure. They basically take a skin graft from your butt, cut out a square of skin. They go in and cut open the closing where your vaginal canal would be. They put in a stint and that piece of skin molds to your body and becomes your vaginal canal. There’s a big dilator they have to keep in there until it sets in place. The skin reprograms itself to be lubricating.
Are you happy with it?
It’s been good. It was a really long process, really physically demanding and emotionally demanding. I was in the hospital for 7 days and I was bedridden. I wasn’t allowed to eat and I was getting shots every couple of hours to make sure my muscles didn’t atrophy. After I had the surgery there were some complications, and I had to do a post-op. I quit my job, I was staying at my parents’ house [and] I just stayed there until I was fully recovered. I couldn’t walk because all my muscles had deteriorated from lying down. I had to go to my gynecologist every week for six months after the surgery to do dilation.
Reading about the lab-grown transplants, do you have any regrets?
I’m happy that they’re looking for treatments that are less painful and less arduous. I only wish I could have talked to some people. I didn’t really know how to get in contact with anybody else with MRKH and I spent so long just not talking to anybody. It’s a very isolating condition; a lot of women really hide away. Certain doctors were very matter-of-fact and it was difficult to understand what that was going to mean for my future. It’s one of those conditions that only gets harder as you get older. First, in your teen years, it affects your sex life, then when you’re an adult it’s about having kids. It affects different parts of your life differently.
Some MRKHS activists worry that transplants over-prioritize vaginal penetration — there are other ways to have a sex life — and would rather people focused on accepting the full spectrum of genitalia and address the other health problems associated with MRKH. What do you think?
A lot of organizations are trying to help MRKH women feel normal. Just because you have MRKHS doesn’t mean you’re not a complete woman. I don’t want to speak for other people. It’s something I’d thought about a lot with my boyfriend. We were happy together without it but I think like there’s something — I don’t want to say I felt into peer pressure — but growing up and having girlfriends talking about their sex lives, it’s very difficult to feel like you’re so different. Especially because nobody, when I was diagnosed, was talking about it. I also think that doctors should do more research into MRKHS itself. The symptoms, related medical problems, and even long-term side effects of current treatments. There are still a lot of unanswered questions for MRKH women.