‘Doctors Had To Make Me One’: Meet The Woman Born Without A Vagina

Rokitansky syndrome affects one in 5,000 women.

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Joanna Giannouli was 14 when she first realised something was different about her.

“My mother took me to our family doctor when I was 14 because I still wasn’t menstruating,” she tells the BBC.

At 16, Joanna was diagnosed with Rokitansky syndrome, a condition which causes a woman to be born without a womb, vagina and cervix.

Although Joanna had all the other signs of a female entering puberty – boobs, pubic hair – she lacked any of the female reproductive organs.

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Scans taken in 2013 of Joanna’s lower abdomen

At 17, she underwent major surgery, so that doctors could construct a vagina for her, allowing her to have sex, though she would not be able to conceive a child.

“The doctors had to make one [a vagina] in order for me to have sex… It was a revolutionary procedure in Athens,” Joanna explains.

“The new vagina the doctors made was narrow and small, and it caused me a lot of pain while having sex, and I had to expand the perineum by doing vaginal exercises.”

Joanna says her syndrome has caused her a whole host of emotional problems, and while she’s in a stable relationship now, things were not always so easy.

“I was OK physically, but I was not OK emotionally. It’s a burden, like something that you cannot get rid of it. I had partners who emotionally abused me about this condition.

“The most hurtful thing was when I was abandoned after my former partner found out. I was engaged when I was 21, living in Athens. When I told my fiancé about the condition, he broke off the engagement.

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“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.”

Joanna says she is “okay” with the fact that she may never be able to have children, and says she considers herself one of the “luckiest,” as her surgery was so successful.

“I would love to be a mother in some way, be it a biological, a surrogate mother or a foster mum.”

Initially Joanna wanted to keep her condition a secret, but ten years on she decided to share her story to help others in the same situation.

“It is liberating to talk about it. I want to support every woman that has this condition because I have been through hell and I know what problems this can cause.”

In a Facebook post after the BBC article was published, Joanna said she had received messages of praise and support from “thousands of woman” all over the world, and added that this was “just the beginning” of her journey to help others.


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