A Comparison of Lichen Sclerosus and Vulvodynia Content Across Social Media Platforms: What Is Trending Over Time

Abstract

Objectives Vulvovaginal diseases are common gynecologic complaints and patients often turn to social media (SM) for medical information. The objective of this study is to examine vulvovaginal content on SM and how it has changed over time. Materials and Methods Four SM platforms were searched (i.e., Facebook, Instagram, Twitter, and YouTube) at 2 time points from March 30 to May 7, 2021, and again from November 24 to December 10, 2022. Newer SM platforms became popular during this time interval and thus TikTok and Reddit were included in the search in 2022. This study focused on 2 common vulvovaginal conditions: lichen sclerosus and vulvodynia. The SM platforms were searched for content on these conditions and the type of content, language, and country of origin were assessed. Results A total of 1228 SM accounts, posts, and pages were assessed. Lichen sclerosus content on SM was mostly informational (32.6%), whereas vulvodynia content was mostly personal experience (30.5%). Patient support groups were significantly more popular in 2021 compared with 2022 and professional groups were more common in 2022 compared with 2021 (p < .001). Overall, Facebook and Instagram consisted mostly of patient support groups, YouTube had both informational and professional videos, TikTok had mostly personal experiences and healthcare professional videos, and Reddit was mostly discussions about patient personal experiences. Conclusions The current study highlights the content and quantifies user engagement of lichen sclerosus and vulvodynia on SM.