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.


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.


Source: www.bbc.com/news/magazine-36054969

Halfricanadian.

#Speechless

jeez! i dont know what to say