When Joanna Giannouli was 14 and still hadn't gotten her first period, her mom started to worry and took her to see a doctor. Refusing to fully examine her, (Giannouli told BBC he wouldn't touch her "private parts"), she went to a hospital for a proper examination two years later when she was 16. It was then she was diagnosed with Rokitansky syndrome—a genetic disorder that causes women to be born without a vagina or uterus.
"When we first saw the doctor, my father put on a brave face. My mother, on the other hand, didn't take it so well," Giannouli told BBC. "We didn't talk about it much for the first five years. I wasn't able to talk about it. I felt destroyed and incredibly weak. My mother believes she may have done something wrong in her pregnancy. I've explained to her that she didn't do anything wrong, it was just genes."
Rokitansky syndrome affects about one in every 4,500 newborn girls, and like Giannouli, most women who have it don't have periods and can't get pregnant, but still have normal external genitalia, breasts, and pubic hair. Also like Giannouli, the first symptom that a woman has Rokitansky syndrome is usually that she still hasn't started getting her period by the time she's 16 and well into puberty.
Sex isn't always possible because the vaginal canal is much shorter in women with Rokitansky syndrome. In Giannouli's case, doctors made a vagina for her when she was about 17. "Because I was born without a functional vagina, the doctors had to make one in order for me to have sex," she said. "I stayed in a hospital for about two weeks, in order to recover. Then I had to be about three months laying on a bed—I couldn't get up. I did vaginal exercises in order to expand my new vaginal tunnel."
As she told BBC, sex was painful at first because the vagina the doctors created for her was "narrow and small." But over time, and with vaginal exercises, her sex life has gotten healthier. But still, Giannouli had a hard time maintaining relationships.
"It's a burden, like something that you cannot get rid of it," she told BBC. "I couldn't have a stable relationship for many years because of that. It is a haunting and unbearable situation. It steals your happiness, your mentality, your chances of having a good and stable relationship. It leaves you with a huge void that cannot be filled, it fills you with anger, guilt, and shame."
Giannouli said the most painful part of the whole process wasn't the surgery, but when her fiancé broke of their engagement after learning about her condition. But as she said, "that all belongs in the past." She's now in a loving relationship. "He knew from the beginning that I have this condition and he chose to stay with me," she said. "He knows that maybe the future will be without children. He's OK with it. I'm also OK with that. I am one of the luckiest."
Since talking with BBC about her condition, Giannouli posted to Facebook that she's been receiving messages from women all over the world who also have Rokitansky syndrome and are happy to see a story like theirs being shared.
"Women with this condition or similar, were brave enough to talk about it, and I am so proud of them," she wrote. "This syndrome puts a stigma on women and right now, it is a huge step for them in order to accept it and finally, be ok with it. Through my story, many women were able to find out more about their condition, also, I made sure that now they have someone to talk to, and I made them feel that they are not alone anymore, we have each other."
This article originally appeared on Cosmopolitan.com. Minor edits have been made by the Cosmo.ph editors.