Sufferers visit gynecologists, urologists and naturopaths in search of relief - only to be told it's 'all in their heads.' But chronic vulvar pain is real, medical researchers say, and it may affect one in six women
Three years ago, Regina Netto felt as if her vulva was on fire, "like somebody had lit up a flame down there." It was so bad that most days the 38-year-old from Laval, Que., could barely walk. And sex? Forget about it.
Her doctor thought she had a urinary tract infection - but treatment for that only worsened her pain. Blood and urine tests for a UTI came up negative, and then a cystoscopy (examination of her bladder with a small camera) showed nothing.
Thinking she had interstitial cystitis (a chronic bladder disease), a urologist prescribed Ms. Netto medication - but that didn't work either. Nor did visits to an acupuncturist, naturopath, osteopath or physiotherapist. She saw eight different gynecologists and urologists in search of relief.
Finally, she says, "A family doctor and a gynecologist told me that there was nothing wrong with me and that I needed to see a shrink."
Ms. Netto had a real condition, called vulvodynia, meaning chronic vulvar pain. But there is no test for it, and while there is some faint visible redness in some women, on the surface most women with vulvodynia look completely normal. This makes the condition difficult to diagnose and leaves sufferers prone to hasty dismissal by their physicians. Most GPs - and many gynecologists - are not even aware of its existence.
But research is now uncovering the concrete, physical markers of vulvodynia, giving therapists the tools they need to develop effective treatments.
In 2006, the American College of Obstetricians and Gynecologists and the American Academy of Family Physicians felt the need to print an educational piece on the condition in their monthly newsletter, sent to 150,000 physicians, with information on how to diagnose and treat it.
"Vulvodynia, like many conditions, has historically suffered from a lack of understanding," says Lori Heim, a director of the AAFP. "But it is real - it is not a psychological condition. And now more is known about it, its extent, and how to diagnose and treat it, so we decided to provide our members with education because the information has evolved."
"One of the difficulties is that there is no test for vulvodynia," says Marc Steben, a family physician and clinical researcher of vulvodynia in Montreal. "The diagnosis is one of exclusion." In other words, when you can't peg the problem as anything else - say, a yeast imbalance, a bladder infection or interstitial cystitis - then it could be vulvodynia.
If all the tests turn up negative, says Alan Gerulath, a gynecologist at St. Michael's Hospital in Toronto, properly diagnosing vulvodynia is "based on symptoms, primarily burning - but not itching - discomfort."
More than a single ailment
To complicate matters, vulvodynia is not just one simple ailment, but an umbrella term for a number of conditions - which may be why the National Institutes of Health in the United States says the condition affects an estimated one in six women at some point in their lives.
One group of women, with what is dubbed "vulvar vestibulitis syndrome," suffer pain just at the opening of their vaginas, usually only with physical contact. Vestibulitis tends to strike early in life, usually before 25, and because the pain is localized it is easier to diagnose, Dr. Gerulath says.
More difficult to pinpoint is "generalized vulvodynia," which causes burning pain in the entire vulva without any contact, sometimes 24 hours a day. This commonly starts between the ages of 35 and 44.
Research has shown that all women with vulvodynia have a higher density of nerve endings in their vulvas. And scientists have documented genetic differences in women with vulvodynia that cause them to respond abnormally to infection and injury.
For many women, an injury - say a chronic yeast infection or childbirth - sparks an immune- and nervous-system response that fails to turn off. The initial problem has disappeared, but their nerves continue to fire pain signals to their brains.
Drugs that control levels of hormones, neurotransmitters and other biochemical messengers are frequently prescribed, such as estrogen creams, anti-epileptics such as gabapentin, and tricyclic antidepressants such as amitriptyline (in doses too low to have an antidepressant effect, but enough to dampen the nerve signals).
Allan Gordon of the Wasser Pain Management Centre in Toronto finds that about one-third of his vulvodynia patients respond to medication. But "there have been very few good, appropriate clinical trials - a lot of the ideas are based on anecdotal evidence about what seems to work," he says.
In another possible clue to the brain's role in vulvodynia, Canadian researchers published a study last month in the scientific journal Pain that demonstrated evidence of altered brain structure in women with provoked vestibulodynia (a newer and more accurate term for vestibulitis). They found that 14 women who had suffered from PVD had more grey matter in the regions of their brains associated with pain and stress.
What this actually means is "purely speculative at this point," says Petra Schweinhardt of McGill University, one of the study's co-authors. It could mean that women who have suffered from PVD experienced changes in their brains as a result of their pain, or it could mean they were born this way. "It could be one or the other, but our speculation is that the increased grey matter might represent an inflammatory response by cells in the brain," Dr. Schweinhardt says.
Because so little of what is known is conclusive, finding the right solution for each patient is a matter of trial and error, involving a mixture of physiotherapy, diets, drugs and therapies such as acupuncture. As a last resort, some women turn to surgery and have small chunks of their vulvas removed - a procedure recommended only for women with pain in small, specific spots.
But Howard Glazer, a neurophysiological psychologist from Toronto who operates a private clinic for urogenital pain in New York (and who co-authored a paper in the journal Obstetrics and Gynecology on treatment options), says he has seen a lot of women still in pain after surgery.
He is equally disapproving of drugs. He says the best option is to help the body to heal itself by increasing blood flow to the vulva, and therefore the delivery of oxygen and the body's own repairing mechanisms. He does this by first mapping the physiology of his patients with a sensitive probe, then teaching them how and where to exercise their vaginal muscles to increase blood flow appropriately.
More controversially, he also tells his patients to get back in touch with their sexuality, pronto, and have "a minimum of three to five orgasms a week," since arousal also increases blood flow.
"[Dr.] Glazer's idea might be a little overstated - I wouldn't want to put all the onus on the patient - but this could be good as a secondary therapy," Dr. Gerulath says. "Anything that relieves muscle spasms can help."
"I wouldn't recommend intercourse if it is very painful - that would be counterproductive - but I do think that engaging in sexual activity can be helpful, by exercising and helping to improve blood flow," Dr. Gordon says. "It is still speculative at this point if it will 'heal' them, but it is possible. There are a number of anecdotal reports that suggest sexual activity, masturbation and orgasm can be helpful."
Naturally, many women suffering from the condition have little interest in sex. But Dr. Glazer argues that anxiety weakens the immune system and exacerbates the condition, so he advises his patients to overcome their fear with counselling and patience.
Although Dr. Gerulath feels the best treatments could lie in future drugs that help the nervous system, he acknowledges that vulvodynia is "a problem with the way the brain receives and interprets pain signals. Certainly there are a lot of examples of mind-body interactions, and absolutely you can influence your own symptoms," he says. "But as to what techniques work, that is a whole other can of worms."
To think of vulvodynia as "psychological" just because it has a psychological component is a gross oversimplification, Dr. Glazer says. "This does not for a second mean that vulvodynia is 'all in their heads' - that is not how the body works. The simplistic thinking that something is either 'real' or 'in your head' should have died out in the 1950s."
Lisa Hunt, who suffers from vulvodynia, spent five years looking for a doctor in Calgary who could help her. After a battery of tests by a number of doctors, she too was given dismissive treatment by her GP.
"He told me flat out that this is not a 'medically recognized condition' and that it was all in my head," the 28-year-old says.
With Dr. Gordon at the Wasser clinic, she says she feels lucky because she is "finally seeing a doctor who knows more about this than I do."