Joanna Giannouli was 14 and still wasn’t menstruating. Her mother took her to their family doctor. But he would not examine her because he would not touch my private parts. When she turned 16 the doctor recommended her for a full check up. There they realised that she did not have a vaginal tunnel. She was suffering from a special condition called Rokitansky syndrome.
Rokitansky syndrome is a condition for women who are born with an underdeveloped or absent womb, cervix and upper vagina. Though these women have ovaries and external genitalia (vulva) and they still develop breasts and pubic hair as they get older. The first sign for this is that a girl does not start having periods. Having sex may also be difficult for them because the vagina is shorter than normal.
Joanna, 17, when diagnosed with Rokitansky syndrome
Joanna was born without a functional vagina, so the doctors at the hospital had to make one in order for her to have sex. She had her major surgery aged 17. As 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.” She adds, “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.”
Things went well for her physically but the struggle did not end there. She was going through a lot emotionally. Joanna had partners who emotionally abused her about this condition. She could not have a stable relationship for many years because of that.
This was all 10 years back. Joanna, now 27, tells, “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 knows that it is a stigmatised condition. People say a lot of hurtful things and one goes through a lot physically and emotionally. She wants to support every woman that has this condition because she has been through hell and she knowa what problems this can cause. Many women have committed suicide because of this. It can be really depressing.
She found the strength and courage because she wants to help other women in the same position because if we don’t help each other then who will?
H/T: BBC