A 27-year-old woman came out in public to raise awareness about a rare condition that had caused her to be unable to menstruate or have sexual intercourse. Joanna Giannouli, from Greece, was born with the Rokitansky syndrome, which meant that her body has internal genitalia that remained underdeveloped.
In an interview with the BBC, Giannouli explained how surgeons had to make an artificial vagina when it was found that her body did not have a womb, cervix and upper genital tract. The Rokitansky syndrome is known to affect 1 in 5,000 women who happen to realise the symptoms mostly when they are unable to start menstruating in their teens. Such women are able to grow breasts and pubic hair and have a normal appearance otherwise despite their internal condition. However, Giannouli admits that she has suffered great physical and psychological distress from the Rokitansky syndrome apart from her inability to biologically have children.
She says that although her mother took her to the doctors when she was 14; it was only after two years that she was correctly diagnosed after getting a hospital scan. Surgeons were then able to create a replica genital passage through invasive surgery so that she could have a normal sex life.
“The new vagina 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,” she says, also adding that the area is made of skin-like tissue which had to be cut more in order to expand the entrance.
Currently living in with her boyfriend, she hopes that she would one day become a mother via adoption or fostering.
