Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome affects approximately 1 in every 5,000 women worldwide. A congenital abnormality, MRKH affects the reproductive tract during fetal development, essentially meaning that the reproductive system doesn't grow fully. In most cases, this means MRKH women are born without a uterus, cervix, or vaginal canal (or that these are not considered "fully functional"). The condition is not normally detected until during puberty and/or when an MRKH woman becomes sexually active, as no external signs are apparent, but penetrative sex is often painful and difficult. MRKH women cannot conceive children, though their ovaries are unaffected and so they can provide eggs for a surrogate.

One of the most public faces of MRKH presently is 26-year-old Jaclyn Schultz. Schultz won Miss Michigan USA in 2013 — her first time in a pageant, no less — and went on to make MRKH awareness her platform at Miss USA later that year. Last fall, she competed on the latest season of long-running CBS reality show Survivor, where she placed as the first runner-up. This didn't come with a tiara, but a prize of $100,000.

Schultz spoke movingly about MRKH, and its impact on her life, during her time on the show; she says the experience, and the ensuing publicity for her cause, has been life-changing. And in an interview with Cosmopolitan.com, she says she'll be using some of her winnings to freeze her eggs, so she and her fiancé can start their "all-American" family. Here, she discusses pageant sass; balancing life, love, and family with MRKH; and how she's decided the condition won't define her:

I was diagnosed [with MRKH] when I was 16. I had never had a period, so at first, my mom took me to our family doctor — they just assumed it was because I was so tall and thin and I played sports. And then a year goes by and I still don't have a period, so we went and got an ultrasound done, and then they diagnosed me. It was kind of a whirlwind time, to say the least. I'm like, "What is going on? What, I can't have kids? What, I'm only 16." You just want to fit in with everybody in school and then the last thing you want to hear is that you're the girl without her period who now can't have kids.

I kept it totally secret — I didn't say anything to anyone really for years. My parents even said, and [this happens to] a lot of girls with MRKH, "You can't say anything." Part of the condition is that you're born without your upper vaginal tract and cervix. Every girl with MRKH has a different story to tell, but I was able to have sex after I was diagnosed without much medical treatment. A lot of girls who I speak to now are 16 or 17 and they're in relationships but can't have sex, or can't have sex fully. I mean you can — but your vagina opening isn't, like, 6 or 7 inches long. It's shorter because you don't have your cervix. Some girls need to have surgery; some girls need to use a [vaginal] dilator. So I think most parents are like, "I don't want to talk about it" — you know?

I never met or even spoke to another girl with MRKH until I was 25.

I never met or even spoke to another girl with MRKH until I was 25 and had come out with it publically. A lot of girls feel really isolated and alone, and that's a huge thing to be alone about. The foundation that I work with now, the Beautiful You MRKH Foundation, is great because they connect girls globally. I was just put on the foundation's advisory board, actually, and am helping to facilitate conferences and [meetups] where they get MRKH girls together.

I didn't say anything for years. I started to open up about it in college to my close girlfriends. And I told my boyfriend Jon. [Editor's note: This is Jon Misch, now Jaclyn's fiancé, with whom she competed on Survivor: San Juan Del Sur.]

Jaclyn and her fiance, Jon. Courtesy of manstromphotographyblog.com.

I remember we had been dating about a month, and I'm like, OK, we're about to tell each other we love each other, and I can't have kids, so I need to tell him. So of course, I was emotional and I'm like [wailing], "Don't date me anymore, I can't have kids," and being so dramatic about it, and he was just like, "Shut up. It's fine, it's fine." He was great about it! I was so nervous to tell him; I think a lot of girls with MRKH are very nervous about telling their significant others. But it's a good way to weed out the bad ones — that's what I say to all the girls. I'd dated a few guys who I had told and they completely shut off; they didn't want to talk about it at all. Those relationships never work out because it's like, if you can't talk about the most intimate part of it that is such a big part of my life, then how can I date you?

Miss Michigan was the first pageant I'd ever done in my entire life — and I won. I entered the competition [because] I was bored at my job, and I thought, I guess I'll give this a try! I didn't even mention MRKH in my interviews at the pageant though. All I had talked about was my career and working on the college newspaper, basically. Then it was about two months after I got crowned [as Miss Michigan] that I saw a post on Facebook and it was from an older woman who had been involved in the state pageant system. She wrote something like, "Good job! Now you're going to thank your sponsors all year and you're just going to be pretty," and I got pissed. I was like, "OK, really, do I literally just 'be pretty' all year? There's got to be some substance to this." That was fuel for me to be standing for something. I wanted to use my title for a greater purpose than for myself — so I just decided to come out with having MRKH.

Schultz competing as Miss Michigan in Miss USA 2013.

My first interview was with a local ABC station in Detroit. It was really scary; I remember sitting at work, at a marketing agency, and I just started crying. I was like, "Holy shit, now the whole world knows," because the interview's title was something like, "Miss Michigan — Born Without a Uterus." It just took off from there. I did an interview with U.S. News and World Report and that got lots of attention, so when I went to Miss USA, I had letters from all over the world from girls with MRKH. It was awesome.

People asked me why I'd kept it a secret. I said I was ashamed of myself. I felt different, like not a complete woman.

It was like a switch flipping. I'd never even talked about [my MRKH] with my immediate family; my aunts, uncles, grandparents, they never knew anything really. When I was diagnosed, I think my mom talked to them maybe once and we never really discussed it again. But when it came out everyone was so proud of me. And it made me feel so empowered. People asked me why I'd kept it a secret. I said I was ashamed of myself. I felt different, like not a complete woman. I felt terrible, and I was told my whole life to keep it a secret, but everybody's different, I'm not going to be ashamed of how I was born.

A casting director for The Amazing Race messaged me on Facebook and wanted me to be on the show. They met Jon and loved him too, so when it turned out that [the cast] for that show was all booked, they said, "What about Survivor?" So we remade our casting videos and sent them in. [I know] we were cast as the "all-American" couple and I was supposed to be the beauty queen, but throughout the casting process, in all my interviews, I pushed my story and talked about my MRKH. I kept telling them, "I'm not your stereotypical pageant girl!"

I didn't talk about it on the island during Survivor though. In my confessionals, when I'm crying about not being able to have kids, that's the first time most of the cast saw any of that. I did talk about it with Josh and Reed [a gay couple also cast on the show] because they need a surrogate too, but it wasn't emotional; no one was aware that it was bugging me. It was toughest at the Final Tribal Council [Editor's note: This is where a "jury" of voted-out contestants vote for a winner, the show's "Sole Survivor"]. I remember thinking, How can I give an emotional story about how I want to win so I can [use the money to] have kids to a jury of men, who are all really young? If it were all mothers, maybe it would have been different.

Schultz on 'Survivor.' Monty Brinton / CBS via Getty Images

The show ended so well. Since I got second place [and a prize of $100,000] — Reed voted for me, thank god, because he knew I wanted to get my eggs frozen — I'm actually planning on starting that process. With surrogacy — for us, the technical term is "gestational carrier" — it's my eggs and it's my husband's sperm — a fertilized embryo, then — and it goes into another woman. We want to adopt too, but we're going to try in vitro first. It's going to be a little Survivor baby! I was like, "Reed, you're going to be the godfather because you voted for me and helped us so much!"

And sure, the title of "Sole Survivor" would have been great, but the exposure that MRKH got, it just — it filled me with joy. It sounds so cheesy but it was like having a greater purpose on the show even than [playing the game] for myself. I feel like it's helped so many other women.

I started receiving letters and messages on Facebook back during my year as Miss Michigan, and now it's at an all-time high. I still haven't responded to nearly 50 girls' messages from during the Survivor finale. It's almost overwhelming now, and I need to take time out of my day to reply to them all — because I want to give everyone the attention their story deserves. It was not a lot at first … now it's blown through the roof. But it's cool. I've even gotten women in their 40s and 50s saying, "I never even knew what my condition was and now I understand it's MRKH." A lot of mothers message me — mothers often feel like it's their fault, like they did something during their pregnancy to cause their daughters to have MRKH; my mom felt this way — and they all say, "Thank you, you're helping my daughter so much."

On the flipside, there's — ugh, this is, like, so stupid, but there's always those people on Twitter who are angry. They're like, "You're terrible, you blindsided Jeremy [a popular contestant on the show] and that's why you're barren." Or, "You can't have kids, good. You're selfish!" I've got a lot of crazies — I told Jon I would rather go through another 40 days starving on Survivor than deal with social media hate. But now I just block everyone negative.

—As told to Alex Rees.

For more info on MRKH, visit YoungWomensHealth.org.

Note: Pictured above at the Survivor: San Juan Del Sur finale, Jaclyn wears a dress designed in partnership with Cincinnati-based fashion designer Amy Kirchen. Ten percent of proceeds from all sales of the dress (via Shoptiques.com) will benefit the Beautiful You MRKH Foundation.

RELATED: I Was Born Without a Vagina, But I'm Still a Woman

Follow Alex on Twitter.

Alex Rees Deputy Editor of News I’m the news director here at Cosmopolitan.com, and I could really use a cup of tea right now.

This content is created and maintained by a third party, and imported onto this page to help users provide their email addresses. You may be able to find more information about this and similar content at piano.io