A teenager has spoken of her 'total shock' at being told at
the age of 17 she had no vagina. Jacqui
Beck, 19, has MRKH, an rare syndrome which affects the reproductive system -
meaning she has no womb, cervix or vaginal opening.
She was only diagnosed after she went to her GP about back
pain - and mentioned in passing that she hadn't started her periods.
Tests revealed her condition and that where her vagina
should be, there is simply an ident, or 'dimple' - meaning she is unable to
have sex or carry her own child.
Women with the condition appear completely normal externally
- which means it is usually not discovered until a woman tries to have sex, or
has not had her first period.
Miss Beck, from the Isle of Wight, admits when she was first
diagnosed, she felt 'like a freak'.
'I'd never considered myself different from other women and
the news was so shocking, I couldn't believe what I was hearing.
‘I was sure the
doctor had got it wrong, but when she explained that was why I wasn’t having
periods, it all started to make sense.
‘She then explained that I would never be able to carry a
child and might have to have surgery before I could have sex.
‘I left the doctors in tears - I would never know what it
was like to give birth, be pregnant, have a period. All the things I had
imagined doing suddenly got erased from my future.
'I was really angry and felt like I wasn’t a real woman any
more.'
Because she had never attempted to have a physical
relationship, Miss Beck had never noticed the problem herself. Had she tried, she would have discovered it
was impossible for her to have sex.
She said: 'It wasn’t really a conscious decision not to have
a boyfriend, I just didn’t really fancy any of the boys in my area, which is
lucky, considering what I know now’.
MRKH affects one in 5,000 women in the UK. Most discover
they have the condition because they haven't started their periods, but some
find out when they struggle to have intercourse.
Miss Beck explained she has a 'dimple' where her vagina
should be so from the outside it looks normal - which explains why the
condition wasn't detected earlier.
Despite the shocking news, she is trying to see her
condition in a positive light - and even as a way of making sure she meets the
right man.
She said: 'If he has a problem with it, then he’s not the
kind of guy I want to go out with.
'I’m a hopeless romantic and I see it as a great test of
someone’s character. Instead of focusing on it putting off men, I actually think it will help me find, “the
one”.
'I want to be upfront with any men I meet and tell them
straight away about my condition. I don’t want them to feel tricked into being
with me.
‘I will feel more comfortable if they know the truth and
besides, if they run at the mention of MRKH then I don’t want to be intimate
with them.'
She says that as a teenager, she was blissfully unaware of
her condition - with no idea that the development she was waiting for would
never happen.
'When I was 14, my friends started talking to me about their
periods. They started carrying tampons around, complaining about cramps and
sharing notes on what it was like.
‘For a year I waited to go through the same, until at 15,
everyone I knew had started their period apart from me.
‘I didn’t panic
though, I’m tall and skinny and thought that might be something to do with me
being a late developer.’
Instead, she focused on her future and when she was 17,
applied to attend a music college in Guildford.
But after suffering from pain in her neck in summer 2012, she
went to see her GP.
'While I was there, I mentioned I hadn’t started my period
yet. I still wasn’t overly worried but I thought it was worth saying something
‘My doctor was very surprised but didn’t seem to think it
was serious. He just suggested that he would do some scans to see what the
problem was.'
When scans showed nothing, she was referred to a
gynaecologist, who immediately spotted something was wrong.
Miss Beck said: ‘My other scan results had been sent to her
and just from looking at them, she knew I had MRKH.
‘She sat me down and basically explained that I didn’t have
a womb, or a vagina, that I was born without them and instead just had a small
dimple in it’s place.'
So mortified by what she had heard, she was too embarrassed
to admit to family and friends she had the condition - let alone the prospect
of telling any future boyfriends.
She said: ‘I was too embarrassed to call my mum and talk it
through with her, so instead, I sent her an email.
'She called straight back and came over to Guildford the
next day from the Isle of Wight.
‘Although mum was upset for me, she tried to focus on
finding out as much about the condition as possible, so we could understand it.
‘She also encouraged me to focus on the bright side. We
laughed as we listed all the things I wouldn’t have to go through, period
cramps, childbirth, smear tests - to try and look on the bright side.’
Focusing on her treatment, Miss Beck was admitted to the
Queen Charlotte and Chelsea Hospital in London, which specialises in the
condition.
There, she was given dilation treatment, which involved
using different sized dilators to try and stretch her vaginal canal - but was
told if it didn’t work, she would have to be operated on.
She said: ‘I spent two days there, getting taught how to use
the dilator and learning more about MRKH.
‘The first time the nurse showed me how to use a dilator I
nearly died of embarrassment. But now I've got used to it, I see it as any
other form of treatment.
‘At the hospital, they referred me to a network of other
women who have the same condition. It was great to speak to other girls who
felt like me.
‘I stopped feeling so lonely and it also gave me hope as I
spoke to women who had gone on to have a full sex life.’
Thankfully, her treatment has worked and if she continues
she will not need surgery and when she chooses to, will be able to have
intercourse.
Further down the line there are more difficult conversations
she will have to have to have when she wants to have children.
She said: ‘I’m not at an age when I’m thinking about kids,
but I think that will hit me later on. I will use a surrogate, or adopt, but I
will have to make sure any guy I meet is ok with that too.
‘Again, I try and take it as a blessing that, unlike woman
who discover they can’t conceive when they are already trying for a baby, I
have time to get used to the idea.’
For Miss Beck, her one hope is that the condition becomes
more well known, so that other women realise they have it earlier than she did.
‘I had only told five of my best friends, but then I
realised it’s not something I should be ashamed of.
‘If I had cancer, or, any other medical issue, people would
be supportive. So, I recently came out to everyone on Facebook, telling them
about my condition.
‘I was surprised at how positive everyone was, they said I was brave and beautiful, now I wish I had been open about it from the beginning.
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