Photo: Joanna Giannouli
Photo: Joanna Giannouli

Joanna Giannouli, was born with Rokitansky syndrome, which means she has no cervix, no womb and (until fairly recently) no upper vagina.

It was not until she was 16 years old, after a family doctor referred her to the hospital when she still hadn’t menstruated, that she was formally diagnosed.

Joanna, 27, who currently lives in Oxford, spoke to indy100:

What's your most vivid memory about this condition?

When I was at the hospital for further examination, and after we were at her office, she said that I was never going to have children. Her manner was so sharp and blunt it almost cut me.

I felt sick, numb, I thought my dignity, my personality, my everything, was all lost. I felt empty. And this kind of feeling, it never left my side.

How many operations have you had since you have been diagnosed, and what are they? Do you need to have any more in the future?

At this stage, I have had 2 operations. One major reconstructive surgery when I was 18, when the doctors create a new vagina tunnel in order to have normal sexual intercourse.

I had another operation a couple of years later on my perineum, in order to expand the width of my vagina, as I call it.

Joanna doesn't need any more operations - at least for now - and she hopes to keep it this way.

What would happen if you wanted to have a baby?

Photo: Joanna Giannouli, an ultrasound of her womb

Well, if I wanted to have a biological baby there is one solution, and it’s surrogacy [or] a womb transplant, then IVF. But it’s an extremely risky operation to begin with, still in clinical trial stage.

My last solution is adoption.

Since a recent interview with the BBC, what kind of reaction have people had? Have you met other women with the condition?

People from all over the world are sending me messages to congratulate me, to give me support, it’s really overwhelming, the love that I receive from people around the world, it’s extraordinary. I have spoken to numerous women who have this condition, and I feel so proud of them, so honoured that they decided to take the first step and talk about it.

It is like I have 'sisters' from all over the world.

Joanna will begin her studies in forensic psychology in September, and her determination to raise awareness has lit a fire.

So many women have it and most of them feel so ashamed, so isolated. I want to tell them that they are not alone, we have each other and they should not be afraid anymore about themselves, or guilty.

We are stronger than that. We owe it to ourselves and to the people who love us the most.

Photo: Joanna Giannouli
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