A woman who was born without a womb, cervix and vagina has spoken out about the condition which means she’ll never be able to have children .
Joanna Giannouli, 27, was unaware she had Rokitansky syndrome until she went to see a doctor after she hadn’t started her period like her other girls her age.
Medics discovered she didn’t have a vaginal tunnel and sent her for major surgery at the age of 17 to create one in order for her to have sex .
Rokitansky syndrome, which affects one in 5,000, means a woman is born with an underdeveloped or absent womb, cervix and upper vagina but have ovaries and external genitalia and still develop breasts and pubic hair.
The operation to create a vagina was revolutionary in Athens, Greece, where Joanna lives, but it left her in a lot of pain as the tunnel was ‘narrow and small’ and she had to go back to have the entrance expanded.
She says that after that she was physically fine but emotionally she struggled with the condition, particularly with ‘abusive’ comments from partners.
At one stage, when she was 21, she was due to be married but her partner broke off the engagement when he found out about the condition.
She battled depression, anxiety, panic attack and struggled with a stable relationship for years after that and describes herself as feeling ‘worthless’ and ‘damaged goods’.
Joanna told BBC Magazine’s Harry Low : “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.”
But now 10 years on from her operation she says that while she still has her battles, she’s not ashamed anymore as she’s realised there’s nothing that can be done to change it.
Joanna says she has been in a loving a stable relationship for the last five years, and her partner has known about the condition from the start and accepts they may never have children.
She added: “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.”
However Joanna says that she is living each days as it comes and not making any plans for the future.
She says one of the most heartbreaking things is that her mother believes she may have done something wrong in pregnancy to have caused it.
Joanna has explained to her mother that it’s a genetic condition – and one which is stigmatised particularly in Greece where she claims people are quite close-minded.
But she told the broadcaster that by speaking out it has given her strength and courage and she wants to help other women in the same position.