Sunday 4 December 2016

Woman opens up about condition that saw her born without a womb, vagina and cervix

Published 29/04/2016 | 14:30

Joanna Giannouli (27) revealed that she was diagnosed with Rokitansky syndrome when she was 16. Photo via Facebook
Joanna Giannouli (27) revealed that she was diagnosed with Rokitansky syndrome when she was 16. Photo via Facebook

A Greek woman who was born with a rare condition which means she has no womb, cervix or upper vagina has opened up about the impact it has had upon her life.

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In a blog posted on BBC.com, Joanna Giannouli (27) revealed that she was diagnosed with Rokitansky syndrome when she was 16, when her mother became concerned that she was not menstruating. Doctors discovered that Joanna did not have a vaginal tunnel and revealed that she would never have children naturally as she was born without a womb.

Following her diagnosis, Joanna underwent major surgery to construct a vagina in order for the teen to have sex in the future.

“After that I was OK physically, but I was not OK emotionally. It's a burden, like something that you cannot get rid of it,” she told BBC.

“I had partners who emotionally abused me about this condition. 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.”

One of the hardest aspects of the syndrome, which affects one in 5,000 women, is that Joanna will never be able to carry a child because she does not have a womb, which she says was tough to come to terms with.

“I would love to be a mother in some way, be it a biological, a surrogate mother or a foster mum. A mother is not the one who gives birth but is the woman who cares for a child.

“At this stage of my life, I'm not thinking about it but maybe in the future I will have children. I love kids, we will see,” she said.

Joanna revealed that it has taken more than a decade to come to terms with her Rokitansky diagnosis but she is no longer ashamed.

“I'm still feeling bad about it but I'm not ashamed any more, it's been way too long. And I've realised that I cannot change it, it's just the way it is, I have to embrace it and live with it.

“For the first few years, and still sometimes, I thought I was worthless. Damaged goods. Not worthy of being loved. I was a lost soul for many years. It can destroy your life. It puts you in a really hard position. I battled depression, anxiety, panic attacks, you name 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. Many women have committed suicide because of this. It can be really depressing.

“I found the strength and courage because I want to help other women in the same position because if we don't help each other then who will? It gives me strength when I talk about it,” said Joanna.

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