While "vulvodynia" might not be a word you recognise, you may be familiar with its symptoms. According to a 2011 study, published in the American Journal of Obstetrics and Gynecology, up to one in 12 women experience the condition's sharp, burning pain at the opening of the vagina, which can be chronic or occur because of contact, at least once in her lifetime. Eight (heterosexual) women with vulvodynia have just shared how the condition affects their lives via a small new qualitative study from researchers at Oslo and Akershus University College and the University of Oslo. The top concern among the women, six of whom are in relationships, and who range in age from 23 to 32: sex.
One woman, married for 12 years, had never been able to have intercourse with her partner, while another reported breaking up with hers because the pressure to have sex was too great. The two single women in the group, meanwhile, expressed their unwillingness to date.
"They really want to have sex; they feel that they're missing out on something that they hear others talk about, something they've rarely or never experienced themselves," said Karen Synne Groven, PhD, one of the study's researchers.
"These women are young, and [at] the age when you are expected to experience big things sexually, and so much is written about how fantastic this is," added Gro Killi Haugstad, PhD, another researcher. "They are extremely disappointed; it is such an enormous disappointment to realise that they can barely be touched."
They feel that they're missing out on something that they hear others talk about, something they've rarely or never experienced themselves.
Karen Synne Groven, PhD
One problem is that women with vulvodynia are often misdiagnosed, and are usually given treatment for vaginal yeast infections and sent home. While the condition's cause isn't known, and some research suggests that repeated yeast infections may indeed lead to chronic vulvar pain, the two are not one and the same.
A lack of education about vulvodynia and the taboo it carries worsen outcomes for affected women. Perhaps the most damaging assumption of all is that the pain women with this condition suffer is "in their heads," — "but this pain is very real," Dr. Groven stressed. "And it is very specific. These women can find areas that are more painful than others. They describe it as a burning, prickly pain. There might be something here that we don't see or detect through medical tests and examinations."
While no "cure" as yet exists, treatments include muscle relaxation, consultations with a physiotherapist or sexologist, or even surgery in severe cases — click through to the National Vulvodynia Association's website for more info.