Joanna Giannouli hadn’t had her period till the age of 16 and this was starting to concern her mother. That’s what led to her first medical examination where she was diagnosed with Rokitansky syndrome.


Rokitansky syndrome is a genetic disorder where a girl is born with normal external genitalia, breasts and pubic hair, but without a vagina, uterus or cervix.

The condition affects one in every 4,500 newborn girls. One of its first symptoms is when a girl still hasn’t started getting her period even though she’s well into puberty.

Year Of The Detox

According to BBC News, upon being diagnosed, Giannouli and her parents were devastated and she found herself putting up a brave face as the family didn’t even discuss her condition 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.”

Sex for women with Rokitansky syndrome isn’t always normal as sometimes, the vaginal canal is a lot shorter. Born without a functional vagina, the doctors had to build her one to facilitate a normal sex life.

“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.”

While the sex was painful at first, over time her sex life has gotten healthier. Joanna admits, however, despite that, maintaining relationships has been a challenge.

“It’s a burden, like something that you cannot get rid of it.” … “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.​”
Sober Recovery

Engaged when she was 21, Joanna suffered heartbreak at the hands of a man who ended their relationship when he discovered her condition. But things are looking up now.

“That all belongs in the past and I am OK now. For the past five years, fortunately, I have had a stable and loving relationship. He knew from the beginning that I have this condition and he chose to stay with me. 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.”

Her journey has been far from easy, and we’re gonna be here rooting for all but smooth-sailing for her, here on out!