Program helps women identify and treat vulvodynia, an oft-overlooked condition that causes chronic genital pain
It is the most common cause of sexual pain in women under the age of 30, but few who suffer from it could even put a name to it.
Now, thanks to a unique program involving a multidisciplinary team of health care providers and scientists from the UBC Department of Obstetrics & Gynaecology and Vancouver General Hospital (VGH), women who suffer from vulvodynia are finding hope, and researchers are on their way to identifying effective treatment strategies.
What is vulvodynia?
Vulvodynia is the recurrent or persistent pain or discomfort – burning, stinging or rawness – in the genital area when no other causes can be found. Thought to be caused by oversensitivity of the nerve endings at the entrance to the vagina, women with provoked vestibulodynia – the most common form of vulvodynia – can experience excruciating pain with the insertion of a tampon, when undergoing genital examinations and during sexual activities.
An estimated one in eight women experience vulvodynia for at least three months during their reproductive years. Some have reported constant pain for more than 20 years.
“And these are the confirmed cases,” says Carolin Klein, a psychologist and Director of the Multidisciplinary Vulvodynia Program (MVP) at UBC and VGH. “Since it’s not a well-known condition amongst health professionals, vulvodynia is often misdiagnosed as a yeast infection, a skin condition or as purely psychological.”
Diagnosis often difficult
According to a 2000 study led by UBC Obstetrics & Gynaecology Assistant Professor Dr. Leslie Sadownik, 90 per cent of women with vulvodynia seek help but it takes an average of six to eight doctor’s visits – to family physicians, gynaecologists and dermatologists – before they are properly diagnosed.
“Many women are relieved just to be properly diagnosed, but the battle doesn’t end there,” says Klein. “There are a number of treatment options – medications, pelvic floor physiotherapy, psychological approaches, and even surgery when all else fails – but at this time it’s still unclear which women will respond to which treatment approaches.”
Ninety per cent of women with vulvodynia seek help but it takes an average of six to eight doctor’s visits – to family physicians, gynaecologists and dermatologists – before they are properly diagnosed.
To meet that challenge, the MVP, consisting of a team of gynaecologists, psychological therapists, and a pelvic floor physiotherapist, was established in 2008 through a donation from Ms. Leslie Diamond. Over the course of 12 weeks, up to 12 women at a time are enrolled in the program and attend educational seminars, psychological skills groups, and individual physiotherapy and gynaecology appointments at the Women’s Clinic at VGH. To date, approximately 250 women have completed the program.
“To the best of our knowledge, ours is the first multidisciplinary team approach to treating vulvodynia in North America,” says Klein, who adds that feedback from participants and research into the efficacy of the approach are showing promise.
Treatment can change lives
One participant, in her post-program survey, wrote: “After four years of incessant pain, it was a relief to find people who weren’t dismissive and had a possible solution [where] previously the only responses I got were ‘it’s all in your head’ and ‘it should go away on its own.’”
Another participant, who was diagnosed just months after her wedding night, said she was “devastated, depressed and angry” and thought she “would never have true intimacy.” After completing the program, she reports the couple is now “having fun trying to get pregnant, something that even last year (we) would have had a hard time believing.”
“The inability to have sexual intercourse puts a huge strain on marriages and intimate relationships. Some women avoid sex or relationships altogether while others are devastated by the thought that, because they can’t engage in intercourse, they may never have children,” says Klein, who adds that the team recently received an e-mail from a past participant with a jubilant subject line: “I have a son!”
For more information on the Multidisciplinary Vulvodynia Program, visit mvprogram.org.