Voices of Vulvodynia: Qualitative Analysis of Patient Experiences on Reddit (Preprint)

Abstract

Although vulvodynia is a prevalent condition, diagnosis and effective treatment remain elusive. As a result, individuals with vulvodynia may turn to the internet for medical information and advice.

This study sought to evaluate content related to vulvodynia discussed on the popular internet forum Reddit. Unlike prior research on vulvodynia, this article captures the experiences of individuals with vulvodynia told in their own words.

The subreddits “r/vulvodynia” and “r/vestibulodynia” were selected for analysis in May 2023. Threads were sorted from most to least popular and data from the top 70 posts from each subreddit was extracted and analyzed. Qualitative analysis was used to identify themes and assess attitudes towards shared experiences.

At the time of analysis, the “r/vulvodynia” and “r/vestibulodynia” subreddits had 7,245 and 685 members, respectively. Of all posts analyzed, 45.7% had positive valence. Of all analyzed threads, the most commonly identified discussions centered around symptoms (28.9%), treatments (28.8%), followed by sexual experiences (16.0%), erasure/disbelief (15.3%), representation/media (6.1%), and humor (5.1%).

This is the first analysis of Reddit content related to vulvodynia. However, results are limited by the number of posts analyzed, an inability to access user demographics, and the study's cross-sectional nature. Findings reveal robust discussions on Reddit regarding vulvodynia. Analyzed content suggests that Reddit provides a unique forum for peer-to-peer caretaking in the form of advice, an outlet for frustration, and a means to find community through shared experiences.