When the cost of life-changing surgery is too high, where can you turn to for help?
In some cases, it’s the internet.
Earlier this month, the family of Kaylee Moats launched a to raise money for vaginal construction surgery.
Moats was born with a rare congenital condition known as Mayer-Rokitansky-Küster-Hauser syndrome (MRKH). It’s also called Müllerian or vaginal agenesis.
An estimated are born with MRKH.
Women with this condition have two X chromosomes.
They tend to have working ovaries, as well as typical external genitalia.
But due to the incomplete development of their internal reproductive tract, they lack a fully developed uterus, cervix, and upper vaginal canal.
The exact cause of MRKH is unknown.
Like many women with MRKH, Moats learned that she had the condition as a teenager when she visited a doctor to learn why she hadn’t started to menstruate.
Now 22 years old, Moats told she hopes that vaginal reconstruction surgery will help her “feel normal.”
“One thing that we hear very frequently is that many of these women feel kind of incomplete as women,” Dr. Martine Cools, a pediatric endocrinologist who specializes in differences of sex development at Ghent University Hospital in Belgium, told Healthline.
Women often question whether, without a fully formed vagina, they’ll be able to satisfy a sexual partner.
Many feel a sense of loss or inadequacy when they learn that they can’t bear children without a functional uterus.
“Even in the United States, womanhood is tightly associated with being able to bear children, which is dependent on having a functional uterus. And the vast majority of women with MRKH are not able to carry a child. So, I think that stigma is there,” Amy Lossie, PhD, told Healthline.
Lossie is the president and chief executive officer of , an organization that increases awareness and empowers women who have MRKH.
When coverage of Moats’ crowdfunding campaign gained traction, Lossie noticed a lot of misinformation and stigmatizing responses in online comment sections.
In response, she helped pen an open letter published by to address misconceptions about MRKH and the surrounding stigma.
“There is so much more to a woman than being able to carry a child. We are mothers, aunts, daughters, lawyers, scientists, doctors, world travelers, accountants, grandmothers, students. We are enough,” the authors wrote.
With support from healthcare professionals and loved ones, women with MRKH can lead healthy and fulfilling lives that include satisfying sex.
Many women with MRKH decide to undergo treatment to construct a vaginal canal.
Nonsurgical and surgical treatment options are available.
In the standard nonsurgical approach, patients use dilators on a daily basis to stretch their vaginal tissue over the course of several months.
This dilation technique is the first-line treatment recommended for most women by the .
When done correctly, it’s safe and has a high rate of success.
It’s also much less expensive than surgery.
However, the procedure requires commitment to achieve the desired results.
“It requires a lot of effort and dedication from the affected individual,” Cools said. “It takes time and motivation to do this dilation, often for five to six months. It also requires a setting where this is possible. For example, when you’re living in a student house where everyone can walk into your room every five minutes, it’s not an ideal setting to start this therapy.”
In comparison, women with MRKH often regard vaginal construction surgery as a quicker fix.
However, surgery carries higher risk of complications and is more expensive.
“Not only for just economic reasons, but also with regards to processing the diagnosis and avoiding complications, we think dilation tends to be the better option to start. If it’s not successful, which happens in around 10 percent of cases, they can still go for surgery,” Cools said.
“The most important thing is that there’s a team available with experience in the therapy. If this team is not available, I think a woman should be referred to a place where it’s available,” she continued.
To help women manage a diagnosis of MRKH, psychosocial support is also critical.
For example, psychologists and other members of Cools’ clinical team offer guidance and reassurance to help women understand and manage their condition.
“It’s more like counselling, support, going through the diagnosis again, and discussing the different aspects, the different therapy modalities, the ways you can communicate with your partner, and so on,” she said.
Peer support may also help patients cope with an MRKH diagnosis.
“I think that meeting other people with MRKH is critical, whether that be through Facebook or other online venues, or preferentially in person. I think that’s one of the best things that you can do for yourself, in regards to MRKH,” said Lossie.
The Center for Young Women’s Health at Boston Children’s Hospital offers free for young women with MRKH and an for people with MRKH and their families.
Beautiful You also runs an where people with MRKH can connect with peers.
By spreading awareness and increasing support for women with MRKH, Lossie hopes that organizations like Beautiful You can help women gain self-acceptance.
“If that’s all we ever do, is give people a freedom, a sense that it’s safe to come out and say, ‘I was born this way,’ to me that’s all that matters,” she said. “Because I’m hoping that whatever we do allows people to feel like, ‘I can be who I am.’”