Woman born without cervix, womb, vagina speaks on condition

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Joanna Giannouli, 27, made her condition known during an interview with BBC News, explaining the challenges of a syndrome that affects around one in 5,000 women around the world.

The young woman reveals the stigmatisation that has become a part of her experience due to the condition that was purely a case of genes.

Speaking on her experiences, reactions to her condition so far, Joanna says:

"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. She blamed herself for the past 10 years. It was really heartbreaking to see her like that.

"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.

"It’s a condition that is stigmatised. 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 fiance about the condition, he broke off the engagement. 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."

Joanna had first been taken to see a family doctor after she had not begun menstruating at age 14, but the doctor had reportedly refused to have any contact with her private parts, sending her to the hospital to be checked out at age 16.

The condition called, Rokitansky syndrome, was finally pinpointed after the doctors had realised that Joanna did not have a vaginal tunnel, going on to create one for her which would allow her to have sex.

Speaking on the procedure, Joanna says:

"It went well, really well. 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. The first sign of it is you have primal amenorrhea – you don’t have any menstruation at all. Apart from that, you cannot have sexual intercourse. That’s why I had major surgery aged 17. The doctors made me a new one. It was a revolutionary procedure in Athens.

"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. It’s a small area underneath the vagina. It’s skin, it’s tissue, and they had to cut it more in order to expand the entrance, as I call it.

"After that I was OK physically, but I was not OK emotionally. It’s a burden, like something that you cannot get rid of.. 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.

"Apart from that, it was hard afterwards. It was just taking a toll on me emotionally, psychologically – it was really, really hard."

It has been 10 years since Joanna found out about her condition and began working on it, and she reveals that she stills feels hurt but is no longer ashamed of it.

"Well, it’s been almost 10 years. 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.

"It taught me a lesson. Although I don’t believe in God, I do believe that this was a huge wake-up call – never take anything for granted."

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At least, Joanna has a semblance of a normal life since coming to terms with her condition, which cannot be said for many others suffering from the same condition all around the world.