My sex drive was the first thing to go. It crept out of my life, very slowly,
until one day I found it was gone.
Sex wasn’t fun or pleasurable any more: it was hideously painful. My vagina
felt dry, uncomfortable and bruised, the flesh inside raw. Then the itching
began. My GP said not to worry, it was probably thrush, and gave me an
antifungal cream, which I used religiously for more than a month. The itchy
discomfort soon segued into a throbbing pain in the deep hollow of my
vagina, and stayed. On bad days it would feel as though my vaginal skin had
been ripped away and acid poured in its place.
It got to the point that I could no longer sit at my desk, and would do little
more than wander around the office aimlessly. I lost my concentration, my
appetite, and – rather too quickly – my sanity. I stopped cycling, swimming,
wearing jeans, trousers, stockings, underwear, anything that might aggravate
the pain, which seemed to have a mind of its own. Sex was the worst, it felt
less like making love than feeling like I was being violated. Doctor after
doctor gave me a differing diagnosis – chlamydia, herpes – and their
corresponding medicines. But I was getting worse, and one day I found myself
in the A&E, my vagina pulsating and my relationship on the brink. When
the hospital could do nothing for me, I realised I needed some serious
answers.
The pain started a year ago. It then took seven months and five doctors to
diagnose vestibulodynia, pain in the “vestibule”, the area inside the inner
labia, where the openings to the vagina and urethra are found. As with most
medical diagnoses, there was good news (they were sure what I had) and there
was bad news (it has no cure). But the bad news didn’t stop there: not only
is vestibulodynia incurable, but doctors are still confused as to why it
exists or how best to treat it, or control the pain. In fact, vestibulodynia
is often diagnosed only when everything else has been ruled out. It is not
contagious or cancerous, nor is it a virus, infection or skin condition. And
although it can cause agonising pain, vestibulodynia is all but invisible to
the naked eye, so that a physical examination of the area will often have
normal findings. More confusingly, infections (such as thrush or herpes) and
vulval skin conditions (like lichen sclerosis) can often cause the same
symptoms. As a result, perplexed doctors too often misdiagnose
vestibulodynia, saying that it is thrush, before sending women, like me, on
their way.
“Vestibulodynia is a poorly recognised condition in the medical profession,”
explains Dr David Nunns, the founder of England’s Vulval Pain Society and a
consultant gynaecologist at Nottingham City Hospital.
“Chronic pain in the vulva is just not considered hugely important by doctors.
We’re not trained very well in managing women’s health – GPs don’t get much
training in gynaecology, and gynaecologists aren’t usually good at talking
about sex or sexual problems. It leads to women not getting the correct
diagnosis and their pain not being taken seriously.”
This is problematic: women see on average five doctors before the condition is
correctly diagnosed. A recent study in the American Journal of
Obstetrics and Gynaecology found that women with vestibulodynia are six
times more likely to have chronic urinary tract infections, four times
likelier to have repeated thrush and three times more likely to report
depression.
Worse yet, one out of every six women suffers from chronic vulval pain,
according to the National Vulvodynia Association. This means that five
million women in the UK will have it at some time in their life. So why are
doctors still so unaware of vestibulodynia?
“It’s difficult to diagnose because it’s a hidden pain,” Dr Nunns explains.
“It’s in the nerves, so there’s nothing to see, there’s no measuring stick.
It’s purely a nerve-ending problem, a reprogramming so that what should be a
pleasurable sensation in the vulva is read as painful. And why that happens,
we don’t know.” Research suggests that the highly sensitised nerves in the
genital region can become overstressed from a particular cause, called a
“trigger event”. And although I think I might know mine (a combination of
stress, thrush and antifungal cream, which can leave behind red, perturbed
skin and a severe tenderness to touch), I am in the minority: only about a
third of women with vestibulodynia can identify a trigger event. More often,
the pain is unprovoked and will seem to have just “appeared” on its own.
Despite the ease with which it might appear, vestibulodynia is incredibly
difficult to get rid of. Pain perception and management are both very
individual – what might diminish my pain wouldn’t necessarily alleviate
yours – so there’s no clear-cut cure for what is, essentially, a fault in
the nervous system.
Without a doubt, it’s the notion that sex might never again be passionate and
thrilling but a continual source of pain that terrifies me. My partner Tom
and I had been together only six months when my symptoms first appeared last
May. Our “honeymoon” period was transformed into a stressful drama. Tom, the
man I want to marry, was forced to stay strong for both of us. None of the
arguments and not even the pain stopped me from wanting to have sex,
bizarrely, and it was up to me to initiate as he was too frightened of
hurting me.
The intercourse – if we even got to that stage – could feel as though my skin
were being forced open and torn away, but out of desperation to feel
“normal” and to please Tom, I would grin and bear it. The stress of it all
increased my pain and my frustration quickly fomented into physical
violence, peppering our time together with weekly temper tantrums. Our
communication broke down to the point that we could barely function as a
couple.
It was the patience and support from Tom, particularly, and my friends and
family that reminded me to have hope, and consultant Dr Nunns’
recommendation to “hit vestibulodynia from all sides” has led me to start
seeing a chiropractor (to realign my spine and bring my nerves back on
track) and an acupuncturist (to “clear” the nerve pathways). I also take a
fairly common medical cocktail to regulate the pain: low doses of an
antidepressant to relax the nerves, a topical numbing agent that I apply
once daily to turn them “off”, and calcium citrate vitamins, meant to
regulate the salts in my body. I’ve joined a society – the London Vulval
Pain Support Group – which holds meetings, provides information and allows
women like me to know we’re not alone. And next week, I start physiotherapy
to teach me how to relax my pelvic-floor muscles, which – I’m hoping – will
make sex pleasurable again. Most importantly, though, Tom and I are now
seeing a psychosexual counsellor, which allows us to talk through things
without arguing about them.
I’m not cured, nor have I cured my relationship with Tom, but if we get
through this, I know we’ll get through anything. And although my pain hasn’t
entirely subsided, I’m far better able to manage it now and am confident
that I’ll soon be able to remember it as a thing of the past.
Looking back at this year already, though, I wish I could have spent less time
being angry and just remembered that pain is little more than your body
telling you something’s wrong. As its keeper, you need to discover what that
is, no matter how long it might take. My luck stems from my friends, family
and Tom, to whom I am incredibly grateful for their enduring wisdom and owe
a huge thank you. So many women with my condition suffer alone, alienated
from their own friends, family, partners and doctors by having something
that nearly no one can fathom, let alone treat.
Dealing with vulval pain
Vestibulodynial is a type of vulval pain syndrome. These syndromes are often
identified only when other causes of pain in the vaginal region, such as
thrush, bacterial vaginosis and eczema have been ruled out.
Soaps, bubble baths and antiseptics can make the condition worse.
Wearing loose-fitting underwear, and washing underclothes in water only, can
sometimes help.
For more information, contact the Vulval Pain Society: vulvalpainsociety.org;
07837 533992
