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By Isabelle Loynes and Anna Hodgekiss 14:26 BST 14 Nov 2013 , updated 08:36 BST 15 Nov 2013
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.
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‘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.
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.
‘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.
Jacqui Beck, 19, shows her singing and dance moves
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'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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The girl with no vagina: Teenager, 19, can't have sex or babies due to rare condition that left her without reproductive organs
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We know about micro-penises. Are there micro-vaginas?
This image was removed due to legal reasons.
Thanks to an infamous episode of New Girl, as well as continued Internet obsession coverage, the American public is now aware that micro-penises exist. Which begs the question: Is there such a thing as a micro-vagina?
First, a refresher on the male condition: A micro-penis is defined as a penis that, when stretched, measures 2.5 standard deviations smaller than the mean human penis size—which usually means it's less than 2.75 inches long. Studies have found that this condition can be caused by several factors, including genetic mutations of the SRD5A2 gene, which codes for an enzyme that helps process testosterone.
While that same mutation can happen in women, it expresses itself differently—it's been linked to a complicated condition called "Swyer Syndrome"—and does not result in an equivalent micro-vagina.
However, men aren't alone in experiencing size issues down there. Female genitalia is so complex, we were able to identify three conditions that manifest in comparable ways in women. Come explore.
Mayer-Rokitansky-Küster-Hauser syndrome
Mayer-Rokitansky-Küster-Hauser syndrome—called MRKH, for short—is a congenital disorder that affects about 1 in 5,000 women. MRKH causes both the vagina and uterus to be underdeveloped or absent.
What does this look like, exactly? Well, let's remember that the vagina is actually just a fibromuscular duct, like a tube, that stretches from the vulva to the uterus. MRKH results in an undeveloped (read: tighter, shorter) duct—and in some cases, it's non-existent, making sexual intercourse very difficult.
On the other hand, the external genitalia—the vulva, labia, clitoris, and even pubic hair—all look normal. As a result, many young women find out they have MRKH when they fail to get their period as a teen. At this time, doctors will conduct an exam to see how small the vaginal opening is (it may be so small they can only use a Q-tip to check it), then an ultrasound or MRI will be used to confirm the condition.
Luckily, dilation and surgical procedures are available to women with MRKH, which expand the vagina enough to make sex possible. It's still unclear what causes MRKH in the first place.
Vaginismus manifests as involuntary tightening of the vagina, which causes the vaginal opening to constrict or close off completely—again, making sex really, really difficult. Women who suffer from vaginismus also have trouble using tampons or getting pelvic exams, for obvious reasons.
The vaginal tightness is caused by involuntary tightening of the pelvic floor muscles—these are the muscles, ligaments, connective tissues, and nerves that support the bladder, uterus, vagina and rectum. When these muscles constrict too much, it can make penetration very painful (if not impossible).
Some women develop vaginismus very early (primary vaginismus), while for other women, it occurs later in life (secondary vaginismus), sometimes due to a traumatic event, childbirth, or surgery. Around 5 to 17 percent of women have suffered some form of vaginismus.
Luckily, the condition is very treatable, namely by learning to control the muscles that cause it through special exercises that include Kegels. The cause of vaginismus, when not related to an external event, remains unclear.
Last but not least, women can suffer from vaginal stenosis, which is the narrowing of the vagina due to a build-up of scar tissue. This condition usually occurs after radiation therapy (radiotherapy) or genital surgery. Women diagnosed with some cancers of the bladder, rectum, cervix, or uterus may use radiation therapy to kill off cancerous cells. Unfortunately, this can cause scar tissue to build up within the vagina, causing it to narrow and tighten. It also can cause a reduction in vaginal lubrication.
To prevent vaginal stenosis from happening, some patients are given vaginal dilators or instructed to do special exercises to increase circulation within the vaginal area. Estrogen creams are sometimes used as well.
Since vaginal stenosis is caused by an external event—usually cancer—it's important for women to discuss treatment and prevention with their doctor. In very rare cases, vaginal stenosis is congenital.
Remember: Every vagina is different
While penis size seems to make the news weekly, discussion around vagina size is nearly non-existent, leading many women to wonder if their vagina looks "normal." While conditions like the ones described above do affect women—and you should talk to your doctor if you're concerned you might be suffering from one of them—remember that, just like penises, vaginas come in a variety of shapes and sizes. From the labia to the clitoris to the vaginal opening, no two vaginas are the same.
Want proof? Just check out The Great Wall of Vagina, which British artist Jamie McCartney modeled from real-life women, where every vagina is its own beautiful snowflake.
This image was removed due to legal reasons.
Fusion health reporter Isha Aran contributed to this story.
Taryn Hillin is Fusion's love and sex writer, with a large focus on the science of relationships. She also loves dogs, Bourbon barrel-aged beers and popcorn — not necessarily in that order.
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