Joanna Giannouli, 27, has Rokitansky syndrome. She was born in Athens, Greece, without an upper vagina- the vaginal tunnel- and is also missing a cervix and a womb. But she is not without bravery, joy and hope.
After having her condition identified by doctors, when her parents took her to see a medical specialist at the age of 14 because she wasn’t yet menstruating, Giannouli underwent surgery to have a vagina constructed for her body at age 17 so that she could engage in sex when she was ready to do so.
At the age of 21 Giannouli became engaged to be married, only to be rejected by her partner when he learned of her condition.
Living with heartbreak for years afterwards, Giannouli tried to raise her spirits. She tried to carve herself out from the feelings of shame and stigma that she felt in connection with having Rokitansky syndrome, but it was difficult to do.
After years of struggling with her identity and self worth, Giannouli has finally found peace. She found the courage to tell this, her story, to bbc.com and share it with the world, in the hope of giving support to others who suffer from the same thing.
Giannouli has now been in a supportive relationship for the past 5 years and is excited and hopeful at the prospect of one day becoming a mother- or, of staying childless with her present partner, and enjoying life together as a duo.
Women with Rokitansky syndrome typically discover their condition during puberty, as Giannouli did, through the absence of menstruation. Some females have their condition discovered earlier in life while undergoing surgery for other conditions, such as a hernia.
About 1 in 5000 women have Rokitansky syndrome.