Joanna Giannouli, 27, has a condition which means she has no womb, cervix and upper vagina. 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. 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, BBC reports.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. My mother took me to our family doctor when I was 14 because I still wasn`t menstruating. He didn`t examine me because he wouldn`t touch my private parts and when I became 16 he sent me to a hospital to be checked out. They realised that I didn`t have a vaginal tunnel and I had Rokitansky syndrome. Because I was born without a functional vagina, the doctors had to make one in order for me to have sex. 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. The first sign of it is you have primal amenorrhea - you don`t have any menstruation at all. Apart from that, you cannot have sexual intercourse. That`s why I had major surgery aged 17.The doctors made me a new one. It was a revolutionary procedure in Athens.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.After that I was OK physically, but I was not OK emotionally. It`s a burden, like something that you cannot get rid of it. I had partners who emotionally abused me about this condition. I couldn`t have a stable relationship for many years because of that. It is a haunting and unbearable situation. 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. Apart from that, it was hard afterwards. It was just taking a toll on me emotionally, psychologically - it was really, really hard. Well, it`s been almost 10 years. I`m still feeling bad about it but I`m not ashamed any more, it`s been way too long. And I`ve realised that I cannot change it, it`s just the way it is, I have to embrace it and live with it.For the first few years, and still sometimes, I thought I was worthless. Damaged goods. Not worthy of being loved. I was a lost soul for many years. It can destroy your life. It puts you in a really hard position. I battled depression, anxiety, panic attacks, you name it.It taught me a lesson. Although I don`t believe in God, I do believe that this was a huge wake-up call - never take anything for granted. I was reborn. It gave me a new life, a new identity. It changed the course of my life. Before, I was a typical teenager with ups and downs. Afterwards, I became really, really mature. I grew up rapidly. I am thankful for that.
This defined me as a person. I am living each day as it is. I am not making any future plans because I don`t know if I`m going to be alive. Not many people know this about me. I wanted to keep it a secret and my mum told family members. It wasn`t the best experience because people pity you. I don`t want people to feel sorry for me. I`m not dying, I`m not in danger. People had this pitiful look. It made me feel sadder about myself.I couldn`t talk about it because in Athens - in Greece generally - people are really close-minded. Sometimes it felt like I was living in the Middle Ages. I couldn`t find a support group in Greece, I couldn`t find anyone else to talk about it. And I needed someone to talk about it! It was huge, and most women with the condition are ashamed, really. I`ve found a couple of women that were willing to talk about it, and after a while they disappeared because they were ashamed of it.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. At this stage of my life, I`m not thinking about it but maybe in the future I will have children. I love kids, we will see. It is liberating to talk about it. I want to support every woman that has this condition because I have been through hell and I know what problems this can cause. Many women have committed suicide because of this. It can be really depressing. I found the strength and courage because I want to help other women in the same position because if we don`t help each other then who will? It gives me strength when I talk about it.