Jen Irwin still hadn’t gotten her period by the time she was 15. A visit to her doctor right before her 16th birthday didn't offer any answers, but when she followed up the appointment with an MRI, the results were inconceivable: She didn't have a uterus.
It turned out that Jen, who’s now 33 years old, had Mayer-Rokitansky-KÃƒÂ¼ster-Hauser syndrome (MRKH), an abnormality that affects about one in 5,000 women at birth. Those with the congenital syndrome are either born without a uterus and vagina or they have underdeveloped ones (they do have working ovaries, however). Jen spoke with us about how MRKH has affected every aspect of her life since her teen years.
Growing Up Without a Period
Not having to deal with PMS cramps and remembering to change your tampon every few hours sounds like a dream come true, right? But before her diagnosis with MRKH, Jen was jealous of her friends’ monthly bleed.
“I definitely remember being in middle school and my friends talking about having their periods—or girls in gym class saying, ‘Oh, I have cramps, I have to sit out,’” says Jen. “When I was young and didn’t know what was going on, I lied about it for a while. Now, everybody says I’m really lucky that I don’t have a period. But I would like to try it for a month just to see what it’s about.”
Love & Marriage
Jen met her husband Jason when she was 20 years old, and they’ve been married for more than five years. While her MRKH has never been an issue for the couple (in fact, she told Jason two weeks after they started dating), that hasn’t been the case with every guy.
“I once had a boyfriend who broke up with me when I told him,” says Jen. “He tried to be cool with it, but the next day he was like, ‘This is not going to work out for me.’ This definitely affected me. I became a little bit standoffish to men. When I met my husband, I really liked him—so I told him right away, and he didn’t care.”
Some women with MRKH are born without vaginas and others, like Jen, have shortened ones. In the case of having a shortened vagina, women can use plastic dilators to stretch and expand it over time. “I haven’t used them since I met my husband,” says Jen. “Sex is a little uncomfortable sometimes, but it’s not painful.”
While women with MRKH won’t ever experience a period and can’t carry a pregnancy, they can fertilize their eggs through IVF and use a surrogate. Jen and Jason briefly discussed IVF as an option; however, Jen found out her insurance wouldn’t cover any of it, and since she’s always wanted to adopt, they decided that that was the best option for them.
“We’re not currently in the [adoption] process,” says Jen, “but we’ve gone to some research sessions. We’re getting to the point that we’re ready, but we’re trying to save some money and knock off as many things as we can on our kid-free bucket list before we jump into that. It’s so intimidating—you have to be mentally prepared.”
Jen’s also at the point where a lot of her friends are having babies—and she acknowledges that it can be tough for her emotionally to deal with that. She started a blog, When Life Doesn’t Give You a Uterus…Make Lemonade, in 2012, to help her cope. “I posted my blog on my Facebook page for the first time three years ago,” says Jen. “I did it because I was tired of people asking when I was going to have kids. It was my way of saying, ‘This is the situation, and we’re not having kids right now.’ I had an outpouring of love and connected with other people with fertility issues. A lot of people have reached out to me since then.”
The Future for Women with MRKH
In November 2015, the Cleveland Clinic announced a revolutionary bit of news: Within the next few months, they hope to transplant a uterus into a woman born without one, making pregnancy possible for people who it was never possible for before.
“I personally feel like it’s very exciting for the MRKH community and others who it might affect,” says Jen. She's still got her heart set on adoption, but the fact that pregnancy might become an option for others fills her with hope. "Although I've never had the desire to get pregnant, a lot of women really, really want to do that, so I think this is great."