SellUsYourStory.com were contacted by Joanna, who thought that her designer vagina story could help raise awareness of her rare syndrome. She was right, her story was published in That’s Life! magazine, and will be published in New! magazine in the coming months. SellUsYourStory.com is part of the largest press agency in the UK and we specialise in helping people share their stories and get the most money possible for their story.
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Rokitansky Syndrome and my designer vagina
At 14, Joanna still hadn’t started her period. While girls were bragging about boys and growing up, she hid myself away and begged for a hospital appointment. But the results were like nothing she expected. They even lost her a marriage proposal…
Heading into the girls changing rooms, my heart sank. This was the bit of the week I hated. I was 14, and every girl around me had started to sprout breasts and wispy patches of armpit hair.
‘Joanna!’ One girl screeched at me: ‘Do you have a tampon?’
I could feel my face redden. I stuttered and said I didn’t have any and the girls around me laughed. Rushing to the toilet, I pulled down my pants hoping to see a sign. But still, nothing.
My mum, Lillian, 37, was already worried about me. Being an only child meant that I was very lonely at home, and my parents hovered over me at all times.
Eventually mum took me to the doctors where a gynecologist performed an ultrasound. They found that my uterus was very small, but due to my slight frame, it was normal.
My 16th birthday passed by. I went back and forth to my GP. But because of ethical issues in my hometown Greece, they refused to do internal examinations on me. I was eventually referred to an student hospital, specifically for women, in Athens when I was 17. They took some x-rays and performed some internal examinations, in front of students – which was so embarrassing!
I barely knew what was down there. The thought of a bunch of strangers knowing more than me about my most private parts made me shudder. But I hoped to get some answers. I had boobs and wide hips but I just wasn’t bleeding and I just didn’t feel like a proper woman.
A few weeks later I visited the hospital with my father, Alexandros, 52. I stood in the doctor’s office as the chief of the hospital read out the results. ‘I’m afraid you won’t ever be able to get pregnant, Joanna,’ he said. ‘You have something called Rokitansky Syndrome.’
I went cold. He added: ‘You don’t have a uterus, or cervix – part of your vagina is missing.’ The room was silent. I didn’t have a vagina? Breaking the deathly silence, I squeaked: ‘Is that it?’
‘Yes,’ he replied. ‘We have no more information about the syndrome for now.’ He was as cold as the room felt.
I felt my stomach lurch. I would never be able to have kids. Every girl dreams of cradling a baby, brushing their glossy hair and watching them grow up. It was like my whole future had been erased. I started to panic and shake, vomit rose to my throat.
Fleeing the doctor’s office, I was in hysterics. The next few months went by in a blur of grief and anger. I felt empty, incomplete and didn’t feel human.
When I told my mum why I still wasn’t bleeding, she blamed herself. She shut herself off for days and said it was her fault. She seemed to think it was some cold medication she took during her pregnancy, but I reassured her that it was just genetics.
The next year, I was called in to have an operation after I had finished my A-levels.
I stayed in hospital for two weeks – it was extremely painful. I even celebrated my 18th birthday from my bed and commode!
I couldn’t get up from the bed or even go to the toilet on my own, but I finally felt like a woman.
As the surgery was an internal reconstructive operation, I had hundreds of stitches running from my vagina to my bum. I had to lie down for three months while I did exercises to maintain my designer vagina’s brand new shape and length.
Basically, they had to make room for a new vagina, to mimic a normal woman’s. A few months later, I was ready to have sex. Now I felt complete, normal and like I would finally fit in. It was then when I met Marc. He was 23, tall, blonde, blue-eyed and looked just like Hollywood actor Leonardo DiCaprio.
I’d started working in a restaurant at the same time as him, but my first impressions weren’t great. When he first laid eyes on me, he said aloud: ‘Who is that thing?’
Staring back at him with disgust, I hit back and said: ‘Please do not call me a thing. Or this ‘thing’ will slap you next time.’
Flouncing away, I worked hard to keep my distance from him but he was a flirt and kept calling me names or telling me jokes. A few weeks later we had to attend a fancy work event together. Determined to prove to him that I wasn’t a ‘thing’ I made sure my hair was luscious and glossy, and my dress was tight and sexy.
I’d just bought a drink at the bar when I felt a tap on my shoulder, I turned around. He looked amazing in a suit. ‘I don’t have a date,’ he said bluntly. ‘Will you be it?’ It sounded so pathetic.
‘I would say yes, if you actually asked nicely,’ I replied – smiling at the sass in my voice. From then on, we were an item.
Our relationship was blissful. Having sex was perfect and exactly like I’d imagined it. It felt so intimate and like I didn’t need to tell him my secret. And he enjoyed it too much to notice! I felt relieved that I didn’t have to give an explanation for my fake vagina.
Six months down the line, we had our first fight. It was only small and stupid but it was enough for him to storm out.
Sulking in my pajamas the next morning, I got a text from him saying: ‘Please come over, I want to say something to you.’
‘It’s too early, wait until later,’ I replied. Moments later, my phone buzzed with a sense of urgency. ‘No, please do me a favour and come over.’
Confused, I made my way over to his flat. The door opened and he ushered me inside. I was met by four giant teddy bears and bouquets of bright red roses. I even spied my favourite chocolates on the bench.
Taking my hands, he knelt down. I was only 21 but my eyes flooded with tears of happiness. He’s going to propose!
Opening a little velvet box, I saw my engagement ring. It was perfect – like our relationship. ‘Joanna, you’re the love of my life. Will you marry me?’
The words rang in my ears. Marriage was forever. I couldn’t keep my condition a secret for the rest of our lives. A worried look spread across Marc’s face, when I caught my breath for too long. ‘I love you Marc, but we need to talk about something really serious before I say yes.’
Sitting down, I told him everything – right from the beginning. He never said a word. When I’d finished, he took it well at first but needed some time to think over the prospect of not being able to have a family.
After a couple of days he came round to my house and he told me that he couldn’t be with me any longer. He truly loved me but he wanted to have and marry a real woman who could give birth. A real woman?! I felt my heart break in two. I was dumped because I had a fake vagina!
I was devastated and got it into my head that because he rejected me, I was going to be rejected forever. From that moment I fell into depression. I sought professional help to try and accept my condition. I was still scared of myself and what other people would think of me. I’d never find love.
Seeing a psychologist helped me to get to know myself and made me realise that this condition was devastating, but I could do nothing to change it and it was down to me to change myself.
It was like being isolated in the girl’s changing rooms again at middle school. It was like I was unworthy of love.
I remembered my surgeon telling me before my operation that a young girl had committed suicide because of her syndrome. She was only 20.
I had to put myself first, and my love life after. I needed to help other girls in my position.
Unfortunately in Greece, there’s a lot of pressure to get married at a young age and for women to give up a career to have a large family.
I was only 21 and women were whispering about me on the street, sometimes outright asking me if I was getting too old to have children.
Still, I held my head high and got on with my life. I was determined not to let this condition control me.
Then one morning, on my 22nd birthday, I logged into Facebook to respond to a few birthday wishes and there was a name in my inbox that I didn’t recognise.
It was from a dark-haired man called Yannis. He was a little bit older than me and he was so handsome. He’d sent me a message saying that a mutual friend was talking about me and he was impressed by what he had heard. My heart leaped.
We chatted online non-stop and it wasn’t long before he got my number. Everything went by in such a blur and within a few days we were having eight-hour long phone calls. We got to know each other very quickly, and for the first time in my life, I was truly in love. But I hadn’t even met him.
When we met it was like I’d known him for years. I already loved him, and just meeting him face-to-face made me even surer. On our first date, I admitted this and he did too. Suddenly I felt a wave of calm wash over me. I could trust this man, and he would still love me. He was the one.
The sexual side of our relationship was incredible too. We were intimate before I revealed my secret but he didn’t notice anything different about my body. After a few weeks I told him about my syndrome. I cried explaining that we would never be able to create children from our love for each other. But I knew he would accept it, he said it didn’t change anything at all.
We ended up moving from Athens to Oxford to follow our careers and start a brand new life together.
Five years on, we’re still together. We’ve talked about getting married but it feels like we already are. I know he loves me, fake vagina and all.
Most importantly though, we’ve talked about having children of our own. Yannis is amazing and is so open to adoption or surrogacy.
My goal now is to study surgical nursing so I can help people understand the insides of their bodies, and know that everybody is different.
I wanted to tell me story to let other women out there know that they are not alone – and will find someone perfect for them. Who accepts them for who they are.
No one can predict what the future will bring but I know I have found my soulmate. In order to find my diamond, I’ve had to sift my way through lots of charcoal.
*names of Joanna’s family and partners have been changed.
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