27 year old Joanna Giannouli, says she has rare condition that affects
around one in 5,000 women. She says she has no womb, cervix and upper
vagina. Speaking to Harry Low of
BBC, Joanna said;
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.
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.
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Scans taken in 2013 of Joanna's lower abdomen
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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.
Joanna was speaking to Harry Low