Characteristics of Vulvodynia Pain: A Nationwide On-line Survey Pilot Study

Principal Investigators

Dates: 6/1/2016 - 5/31/2017

Co-Investigators:  Judith Schlaeger, Tonda Hughes, Alana Steffen

Abstract:  Our long term goal is to identify women’s perceptions of vulvodynia pain to ultimately inform the development of effective treatments. Vulvodynia, a debilitating pain syndrome that has no underlying identifiable pathology, and affects up to 14 million American women. Vulvodynia is characterized by pain (burning, irritation,stinging or rawness) in the vulva and pain with vaginal penetration that renders sexual intercourse virtually impossible.  Not only are women in pain, but they have often either lost their partners or have relationship difficulties due to their inability to have sexual intercourse. Annually American women spend $31 to $72 billion dollars seeking treatments for this chronic life changing pain syndrome.  No pain treatment is  consistently effective for women with vulvodynia.   Vulvodynia is difficult to treat because of insufficient knowledge about the nature of vulvodynia pain. Varying clinical treatment responses suggest there may be yet to be identified vulvodynia subgroups. Unfortunately, the few studies that describe vulvodynia pain were hampered by small sample size, lack of consistent study protocols, and lack of valid, reliable, and comprehensive measures of pain. Some evidence suggests that vulvodynia is a complex pain phenomenon with both neuropathic and nociceptive characteristics, however characterization of women’s perceptions in has impeded effective treatment strategies.

This foundational pilot research aims to determine proof of concept that vulvodynia pain can be characterized via an Internet-based study using valid and
reliable measures used with other populations (cancer, sickle cell disease, postpartum, Parkinson’s). We must first demonstrate that we can efficiently recruit a sample that will complete all measures and report the nature of vulvodynia pain. This information will support a larger NIH proposal aimed at distinguishing symptom profiles and identifying vulvodynia subgroups. This information will be used to develop interventions to reduce vulvodynia pain.

We will conduct in this CRB pilot study the first nationwide on-line survey to collect data from women with vulvodynia about their pain, sexual function, physical limitation, and quality of life. Women with vulvodynia will participate via a link on the National Vulvodynia Association (NVA) website at NVA.org. Results from these findings will begin to describe vulvodynia pain and how it impacts on sexual function, physical limitations, and quality of life. We will begin to examine the sensory elements of vulvodynia pain: 1) location and distribution; 2) intensity (present, worst and least pain in the past 24 hours); 3) quality; and 4) pattern.   We will also obtain evidence of whether or not pain of vulvodynia pain has neuropathic components.

Campus Research Board