'I was born without a vagina'

Published Thursday, Dec 12 2013, 19:40 GMT  |  By  |  Add comment
Jacqui Beck got the shock of her life when she discovered her condition – affecting one in 4,500 baby girls – had left her unable to have sex or conceive a child of her own.

Jacqui Beck sat staring at the doctor in disbelief. What had started out as a routine appointment for back pain had ended in the most shocking news the 17-year-old had ever been confronted with – she had been born without a vagina.

As the doctor explained about a condition called MRKH (Mayer-Rokitansky-Küster-Hauser syndrome) and talked about missing wombs and cervixes, the teen could only form one thought: 'You're wrong, surely.'

"I couldn't take it in – she was talking about me," says Jacqui, now 19. "It's not something you expect to hear, that your body is missing some of the vital things that, as a woman, you think you have.

"Until that moment, I'd been a regular teenage girl with dreams of going to drama school. Now, suddenly I was a girl with a 'syndrome'."

Jacqui was born without a vagina

© Stephanie Mackrill

Jacqui was born without a vagina

Aged 12, like thousands of adolescents every year, Jacqui had learnt about the birds and the bees in school. As the years passed, she went through puberty and developed like her friends in every way except one – she was still yet to experience her first period.

"Every month I waited for it. I wasn't envious of my friends – I wanted to get it over and done with. My mum gave me a packet of sanitary towels but they just sat in the cupboard gathering dust.

"Even when I turned 17, I wasn't worried. You always hear about people being late starters and I thought that was me."

Jacqui moved to Surrey from her family home on the Isle of Wight to study musical theatre in September 2011. She began to experience back pain, so she saw her GP.

She says: "He said I needed an X-ray. As a routine they ask if you're pregnant and I joked that I couldn't be, as I hadn't even started menstruating.

"His reaction made me feel that this wasn't as normal as I'd thought. He sent me for blood tests to check for hormone imbalance and ultrasound scans."

In December 2012, Jacqui learnt the shocking truth that she had MRKH. She had been born without a cervix, womb and vagina. "My body didn't look any different. Externally, it was just the same as any other girl of my age. I had an opening down there, but I didn't realise it was only about an inch long."

The gynaecologist explained that Jacqui would never be able to fall pregnant. And she'd never even be able to have sex without treatment to build her a vagina.

"There was so much to take in. I hadn't ever been in a physical relationship – I hadn't yet met anyone I'd felt that way about – but now I found myself wondering if I ever would. At 17, I'd not given children much thought, but now the possibility of giving birth had been taken from me too."

Jacqui was told there was an alternative to surgery – she could 'build' a vagina by using dilators every day to stretch the muscle. Before she left, she was handed a box of four dilators to take home and use.

"I felt like a freak," she says. "I went to college in shock and burst into tears when a tutor asked if I was OK. When I got home, I still couldn't bring myself to say the words, so I emailed my mum. She was wonderful and began searching for information to help me straight away."

Shortly after last Christmas, Jacqui pulled the dilators from her wardrobe where she'd hidden them. "I thought: 'If you're ever going to have a relationship, you have to do this,;"' she says.

"I was terrified one of my housemates would walk in and find me in such a degrading position, so I'd bar my door and only use them late at night. But it was horrible. The cheap, thin plastic was hard to hold and made me bleed."

When she next saw the doctor, she was told she wasn't making good enough progress. She faced two more years of dilator treatment, or surgery.

Feeling completely isolated, she'd hit rock bottom when her mum discovered that Queen Charlotte's & Chelsea Hospital in London have a specialist unit dedicated to MRKH, plus a forum where Jacqui could talk to other girls with the syndrome. She was referred there in April this year.

"The difference the hospital has made to my life is amazing," Jacqui says. "At my first appointment, doctors threw away the dilators I'd been given and replaced them with specially designed ones. And before anything happened, they gave me counselling sessions, then admitted me to show me how best to use my new dilators.

"After three days, I'd made more progress than I had in three months with the horrible cheap ones I'd first been given."

Seven months on, Jacqui's successfully finished her treatment: "If I'm not sexually active, I'll have to use the dilators from time to time. I haven't met anyone I'm serious about yet but when I do, I'll be completely honest with him. If he runs a mile, then I'll know he isn't worth it!"

When it comes to children, her ovaries are intact, so Jacqui will consider surrogacy or adoption when the time comes.

"I've got my confidence back now," she says. "Isolation is the worst feeling and I'd hate for another girl to go through what I did, thinking she's alone. So I decided to "come out" on Facebook last month.

"The reaction was overwhelmingly positive, people telling me I was brave and beautiful. Now I wish I'd been open about it from the beginning. I'll spend the rest of my life making sure other girls know it's OK to be born different."

By Isabelle Loynes and Su Karney