Vulvodynia Viewed From a Disease Prevention Framework: Insights From Patient Perspectives

INTRODUCTION: Persons with vulvodynia (a chronic vulvar pain condition) suffer many barriers to diagnosis and treatment, several of which may be exacerbated by the sociocultural and geographical context in which they live. AIM: We drew on the experiences of patients with vulvodynia who were living in small urban and rural communities to learn what they perceived as the major barriers to diagnosis and treatment as well as to probe for possible solutions. METHODS: For this qualitative case study, we conducted 3 focus groups with a total of 10 participants, drawn from patients seen at our academic tertiary referral center, with a goal of understanding their lived experience with vulvodynia. MAIN OUTCOME MEASURES: The patient dialogue was coded into themes and temporally grouped to illustrate struggles and victories in diagnosis and treatment. RESULTS: Participants confirmed that healthcare provider knowledge and attitudes as well as system challenges (specialist and allied healthcare provider availability) are major barriers to timely diagnosis. Of novel interest are other factors that exacerbate distress and delay diagnosis such as patients’ inadequate knowledge of sexual functioning and sociocultural messages regarding “normal” sexual activity. Our work suggests that a disease prevention framework that includes comprehensive sexual education before or at the onset of sexual activity may be of benefit in reducing the burden of vulvodynia when added to strategies to increase healthcare provider knowledge and improve access to effective treatments. CONCLUSION: While healthcare provider knowledge and attitudes are often at the forefront of barriers to diagnosis, our study suggests that to minimize patient distress and expedite diagnosis, resources must also be directed to promoting comprehensive sexual health education. Webber V, Miller ME, Gustafson DL, et al. Vulvodynia Viewed From a Disease Prevention Framework: Insights From Patient Perspectives. Sex Med 2020;8:757–766.