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.
Shock: Jacqui Beck was told
at the age of 17 she had no vagina. She was diagnosed with MRKH, an unusual
syndrome which affects the reproductive system - meaning she has no womb,
cervix or vaginal openingShock: Jacqui Beck was told at the age of 17 she had
no vagina. She was diagnosed with MRKH, an unusual syndrome which affects the
reproductive system – meaning she has no womb, cervix or vaginal opening.
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.’
Jacqui Beck
Unaware: Miss Beck explained
she has a ‘dimple’ where her vagina should be so from the outside it looks
normal – hence why the condition wasn’t detected in her younger years
Unexpected: Miss Beck 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,
which means she is unable to have sex or carry her own childUnexpected: Miss
Beck 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, which means she is unable to have sex or carry her own child
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.
WHAT
IS MRKH SYNDROME?
MRKH (Mayer Rokitansky
Küster Hauser) is a congenital abnormality which affects one in 5,000 women in
the UK.
It is characterised by the
absence of the vagina, womb and cervix.
Women suffering from the
condition will have normally functioning ovaries and so will experience the
normal signs of puberty but will not have periods or be able to conceive.
The external genatalia are
completely normal which is why MRKH isn’t usually discovered until women are in
their teenage years.
It’s usually discovered when
the woman tries to has sex or fails to get her period.
Many women are able to
create a vaginal canal using dilation treatment, which uses cylinder shaped
dilators of different sizes to stretch the muscles.
However, if this is
unsuccessful then surgery will be used to stretch the vaginal canal.
Following treatment women
are able to have intercourse and can have their eggs removed and fertilised to
be used in surrogacy.
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.
Jacqui Beck
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 see’
‘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.’
Hindsight: Miss Beck says
that as a teenager, she was blissfully unaware of her condition - with no idea
that the development she was waiting for would never happenHindsight: Miss Beck
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 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.
Jacqui Beck
Help: Miss Beck is now
undergoing treatment to help her try and have intercourse in the future
‘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.
Honest: Miss Beck says she
now wants to speak out about her condition to raise awareness of it Honest:
Miss Beck says she now wants to speak out about her condition to raise
awareness of it
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.
Jacqui Beck
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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