Seeking answers and finding support: a qualitative analysis of sexual and pelvic pain online communities on Reddit

BACKGROUN: Individuals with sexual and pelvic pain disorders often use the internet to gain information because there is limited research about their diagnosis, management, and lived experience. AIM: To characterize and describe the experiences, needs, and online dialogue of individuals with pelvic floor dysfunction, vaginismus, vulvodynia, and vestibulodynia. METHODS: Using Apify, a web-scraping tool, we extracted the top posts from four subreddits focused on female sexual and pelvic pain disorders (r/Vaginismus, r/PelvicFloor, r/Vulvodynia, and r/Vestibulodynia) in August 2024. Three researchers conducted a content analysis and collaborative thematic analysis using spreadsheets to develop themes. OUTCOMES: Of the 201 extracted posts, there were 19 content codes related to users' experiences, symptoms, sexual activity, relationships, therapies, and healthcare interactions which informed the development of three themes. RESULTS: The most discussed topics were symptoms (124 posts), sexual intercourse (91 posts), traditional therapies (84 posts), non-traditional therapies (69 posts), and symptom resolution (67 posts). Three themes were generated: female sexual dysfunction (FSD) treatments necessitate medicalization and psychologization, epistemic injustice shapes negative health experiences, and online communities provide more than emotional support for those living with FSD. CLINICAL IMPLICATIONS: These findings can inform clinical practice and understanding based on patients' lived experiences and guide future care, research, and interventions. STRENGTHS AND LIMITATIONS: The sample population of Reddit users may not be as generalizable to the general population given demographic data are not available. However, individuals can have more open discussions on socially stigmatized topics because of the public and anonymous features for Reddit's millions of users. CONCLUSION: Through analyzing FSD online communities, our study highlights how societal inequities impact healthcare experiences, the multitude of explicit and implicit ways online communities offer support, and the importance of holistic treatment of sexual and pelvic pain disorders.