27-year-old Joanna Giannouli 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.
Here, she explains the challenges of a syndrome that affects around one in 5,000 women.
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.
These scans of Joanna’s lower abdomen were taken in 2013
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.
Read more: bbc.com