PELVIC PAIN EDUCATION PROGRAM:
WHAT IS THE NATIONAL VULVODYNIA REGISTRY?
Research informing clinical care
The National Vulvodynia Registry was a longitudinal study conducted from 2009 to 2014 that followed over 300 women around the US. The study was designed to find what women with vulvodynia experience, the treatments they received, and how they responded to treatment. Several publications resulted from this research, but here is a summary of what researchers discovered specifically in this group of women:
the majority, 90%, of women with vulvodynia had pain localized to the vestibule the remaining 10% had wide-spread pain
despite having pain, 84% of women continued to be sexually active
nearly 90% also had pain and dysfunction in the pelvic muscles, but less than 50% were treated with pelvic physical therapy
women with high levels of emotional and psychological distress had higher pain levels
many women, 30-90%, also had other conditions such as migraines, irritable bowel syndrome, chronic pelvic pain, and anxiety
regardless of the treatment they received, over time, women's pain and quality of life improved but not their sexual function
having higher levels of vaginal muscle pain correlated with worse sexual function.
Researchers concluded that pelvic and vaginal/ pelvic muscle dysfunction and emotional distress are significant contributors to vulvodynia pain. These findings might explain why other research shows that pelvic physical therapy and psychological therapies that address stress, anxiety, and pain, work best for managing vulvodynia. These interventions are now routinely recommended to women with vulvodynia.
The NVR investigators recognize and give thanks to all study participants. Without their contribution, this research would not be possible.