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Vulvodynia, a chronic condition that makes contact with the vagina extremely painful, takes a significant toll on a woman’s well-being.Getty Images

It is not uncommon – perhaps even normal – for sex to hurt the first time. But for about one in six women, sexual activity is unbearably painful every time, and the pain does not seem to go away.

A typical case: A woman sees her family doctor after experiencing pain with vaginal touch or penetration. The physician diagnoses a yeast infection. She is prescribed an anti-fungal cream that she uses daily, expecting the symptoms of cutting and stinging to go away. But they don't.

She returns to her doctor, who might prescribe a stronger anti-fungal and encourage her to "wait it out." When she returns a third time, insisting that there are cuts or tears on her vagina, her doctor examines her and declares everything normal. And then she hears those piercing words that make her already distressing pain completely intolerable: "It must be in your head."

Approximately 15 per cent of women suffer from vulvodynia, a chronic pain condition that makes any type of contact with the vagina – through intercourse, other forms of sex play, a Pap smear, even the seam on a pair of skinny jeans – agonizing. And for the vast majority of these women, an examination of the vagina and vulva will show no evidence of cuts, no skin lesions, no redness and no "signs" of pain. Everything will appear entirely "normal."

The absence of any sign of injury makes sense once one understands chronic pain: It is situated in the brain, not necessarily in the area of the body where the pain is experienced. In the past, medications applied on the vagina or taken orally were considered front-line treatment. However, randomized controlled studies found that such medications, given based on the theory of vaginal injury or tissue damage, worked not much better than a placebo.

At the same time, science was revealing that many women with vulvodynia had other co-occurring pain conditions and problems with pelvic floor tightness. This seemed to suggest that whatever was maintaining the vaginal pain might also be contributing to these other conditions, leading scientists to focus their search for answers on the brain itself.

A study in 2008 (and several others since then) found that women with vulvodynia had more grey matter in parts of the brain related to processing pain as well as stress. Since those studies, research has shown that there are structural and functional changes in the brains of women who experience chronic vaginal pain, such that even the slightest touch is perceived as pain – and the sensations of pain are highly intensified, or "dialled up." This phenomenon is known as "central sensitization," which involves proliferation of pain cells in the brain and the heightened response of those brain cells even in the absence of any painful trigger.

So it seems that understanding how the brain changes is key to understanding how to best treat chronic vaginal pain. But the concept of neuroplasticity – that the brain is capable of changing throughout one's adult life – is still mysterious to scientists and physicians, let alone the public. And many health-care providers continue to search for an injury to the vaginal tissue.

Another puzzle in understanding vulvodynia is identifying who may be vulnerable to developing it. There is some evidence that chronic yeast infections may act as a trigger for the initial vaginal pain, but there is no evidence that yeast infections cause the pain to continue. Similarly, women with vulvodynia may be genetically prewired to be susceptible to chronic pain, and may even have mothers or sisters with other chronic pain conditions. Many women report flare-ups during periods of stress.

Regardless of the initial "trigger," the science points to the brain as being responsible for the continuing pain, so it's no wonder an exam by a physician would be "normal" – it's just that the physician is looking in the wrong location.

Is there a parallel to this in men? Possibly. Chronic prostatitis/chronic pelvic pain syndrome is a condition involving severe pain in the prostate. Recent research has found structural changes in the brains of men experiencing this pain. It is not clear at this point whether the brain changes give rise to the pain, or are a result of experiencing the pain. Like vulvodynia, stress has been identified as one of the triggers.

Vulvodynia takes a significant toll on a woman's well-being. Given the ostensible centrality of sex in our society, when a young woman starts to lose her desire, avoid sexual invitations and worry about the effect on her relationship because sexual activity – which is supposed to be normal, natural and pleasurable – elicits turmoil, it can't help but have an emotional impact. Her partner may wonder whether her pain is a sign of her lack of attraction, or a sign of the couple's sexual incompatibility. Relationships where open and honest communication is absent inevitably suffer, and periodically end.

Some women cope by avoiding any contact with their genitals, which often extends to non-painful activities such as clitoral stimulation, kissing and even undressing in front of a partner, for fear that such activities may lead to painful sex. Other women suffer in silence, engaging in sexual activities despite agonizing pain. Many lose all motivation for sex, and the capacity to become sexually aroused is also impacted. Women who aren't in a relationship may fear how to tell a potential partner about chronic vaginal pain, and avoid dating as a result.

Understanding vulvodynia as a brain phenomenon means treatments that only target the vaginal skin may not adequately treat the pain and may, in fact, worsen it, as was found with the use of cortisone (a steroid hormone that, when used chronically, leads to thinning of the vaginal walls and possibly more pain). There is growing scientific support for psychological strategies such as mindfulness meditation and cognitive behavioural therapy in treating vulvodynia.

Scientific research will eventually unlock the puzzle of women's sexual pain, and there is hope that in the years to come we will have a much better understanding of who is vulnerable, when vulvodynia shifts from being an acute pain to a chronic pain, and what treatments are best suited to reverse the brain changes thought to perpetuate the pain.

DIAGNOSIS AND TREATMENT

Chronic vaginal pain that cannot be explained by menopause, a skin condition, postpartum healing after a vaginal birth or other conditions may point to a diagnosis of vulvodynia. Here is what you should do:

1. Ask your physician to carry out a vaginal pain assessment. This is done while the woman is lying on an examination table, with the physician using a cotton swab to lightly touch different locations around the opening of the vagina. Whereas touching the thigh or labia will not elicit pain, contact with certain spots around the vagina can provoke an intense pain and confirm the diagnosis of vulvodynia.

2. Consider seeing a pelvic floor physiotherapist. Vulvodynia is associated with chronic tightness and lack of control or awareness of the pelvic floor muscles. Hands-on training with a pelvic floor physiotherapist can be an integral part of treatment. Check the Canadian Physiotherapy Association website to find one in your city.

3. Consider multidisciplinary treatment (such as Vancouver's Multidisciplinary Vulvodynia Program), which involves a gynecologist, pelvic floor physiotherapist and mental health-trained professional (such as a psychologist or counsellor) working together. Therapists teach women effective pain-coping skills and can work with the woman and her partner to explore ways to reintroduce sexual activity.

4. Remember that just because there is no sign of pain or trauma in the vulva/vagina, this does not mean that the pain is "in your head." Find a provider who understands vulvodynia and supports you.

Health Advisor contributors share their knowledge in fields ranging from fitness to psychology, pediatrics to aging.

Lori Brotto is an associate professor of gynecology at the University of British Columbia and a registered psychologist. You can find her at brottolab.com and follow her on Twitter @DrLoriBrotto.

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