Kate Hodal: Photojournalist – Travel Writer

NOT SO GENTLE TOUCH

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

Vestibulodynia 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