Understanding Patient Experiences of Vulvodynia Through Reddit: Qualitative Analysis.

Abstract

Background: Vulvodynia is a chronic vulvar pain condition affecting up to 25% of the US population. However, diagnosis and effective treatment remain elusive. Many individuals with vulvodynia face stigma and medical uncertainty, leading them to seek information and web-based support. Reddit is a popular social media platform where patients share health concerns and experiences. The anonymity and accessibility of this platform make it a valuable source of real-world patient perspectives that are often overlooked in clinical settings.

Objective: This study evaluated Reddit content related to vulvodynia to explore how individuals with vulvodynia describe their symptoms, treatments, and personal experiences.

Methods: The subreddits "r/vulvodynia" and "r/vestibulodynia" were selected for analysis in May 2023. Threads were sorted from the most popular to least popular, with "popularity" measured by upvotes. Opening threads from the top 70 posts in each subreddit were extracted and analyzed using inductive qualitative analysis to identify themes and sentiment analysis to evaluate attitudes.

Results: In May 2023, the "r/vulvodynia" and "r/vestibulodynia" subreddits had a total of 7930 members (7245 and 685 members, respectively). Out of 140 analyzed threads, 77 (55%) contained negative attitudes. A total of 50 (35.7%) threads were seeking information or advice and 90 (64.3%) included some form of peer support. Inductive thematic analysis identified 6 core themes: symptoms (n=86, 61.4%), treatments (n=83, 59.3%), sexuality (n=47, 33.6%), erasure or disbelief (n=38, 27.1%), representation or media (n=17, 12.1%), and humor (n=15, 10.7%). Threads that discussed treatments (48/83, 57.8%), sexual experiences (25/47, 53.2%), and representation (14/17, 82.4%) had the highest proportions of positive attitudes, while threads that touched on erasure (21/38, 55.3%), symptoms (51/86, 59.3%), and humor (12/15, 80%), had the highest proportion of negative attitudes. A multivariable logistic regression of valence on the themes revealed that posts referring to treatments (odds ratio 12.5, 95% CI 3.7-42.2; P<.001) or representation (odds ratio 21.2, 95% CI 4.2-106.0; P<.001) were associated with significantly increased odds of positive valence. Furthermore, it was noted that 3 of the 5 most frequently discussed treatments aligned with clinical guidelines from the American College of Obstetricians and Gynecologists, American Urological Association, and International Society for the Study of Vulvovaginal Disease. Despite this alignment, threads frequently mentioned alternative remedies and frustration with medical professionals related to diagnostic delays and perceived lack of understanding.

Conclusions: This is the first study of Reddit discussions about vulvodynia. Findings suggest a gap between patient experiences and provider understanding, underscoring the need for improved patient education and greater clinician awareness of psychosocial factors in vulvodynia care. While limited by its sample size and lack of demographic data, this study highlights how web-based communities can help identify ways health care providers can better meet patient needs and how patients mutually support each other.