The Evidence-based Vulvodynia Assessment Project. A National Registry for the Study of Vulvodynia

OBJECTIVE: To create a national registry for the study of vulvodynia in order to enhance classification of vulvodynia based on multiple phenotypic domains such as pain characteristics, clinical examination, sexual function, psychological functioning, and distress.

STUDY DESIGN: Methodology for this prospective cohort registry was institutional review board approved and implemented at 8 enrollment sites starting in 2009. Women underwent gynecologic evaluation and pressure sensory testing for assessment of pain sensitivity in the vaginal mucosa and vaginal muscles. Psychometric questionnaires were used to assess self-described pain, distress, sexual function, and quality of life.

RESULTS: More than 300 women were enrolled and 176 charts were analyzed. This cohort had a median age of 29 years and median pain duration of 25.5 months. A total of 84% of participants were previously or currently sexually active in spite of pain. The most common pain comorbidities reported by the women were migraines (34%), chronic pelvic pain (22%), and irritable bowel syndrome (20%). Anxiety affected 41% of the cohort. More than 90% presented with localized vestibular pain, and 90% had muscular examination abnormalities.

CONCLUSION: A national registry for the study of vulvodynia was established with successful enrollment of participants at 8 sites. In addition to the cotton swab evaluation for vulvar allodynia, women with vulvar chronic pain should also be routinely screened for musculoskeletal dysfunction, emotional distress with specific emphasis on anxiety, and comorbid pain conditions.