A novel Instagram account was created to avoid algorithm bias. Search was performed utilizing the term “#endometriosis”. The most recent 100 results in the English language were analyzed independently by two reviewers. Reviewers catalogued the type of author and content of each post. Patient Education Materials Assessment Tool (PEMAT) was used to assess the understandability and actionability of the content.

The most common speaker/author was a health blogger (n=75), followed by advocacy groups (n=11), industry (n=7), and healthcare provider (n=7). Patient testimonial (n=37) was most common, followed by awareness (n=22), quote/meme (n=13), education regarding symptoms or pathology (n=11), management strategies (n=9), and advertisements (n=8). There were 42 posts that discussed pain, 16 related to infertility, and 42 that addressed non-pelvic complaints. Only 34 of these 100 posts mentioned treatments, with 7 mentioning surgery and 2 discussing hormonal medication. The PEMAT Audiovisual Understandability average is 64 points (95% CI 58.8-69.0) out of 100. The PEMAT Audiovisual Actionability average score is 31.5 (95% CI 24.1-38.6). The most common co-hashtags were #chronicillness, #endowarrior, #endometriosisawareness, and #endometroisisawarenessmonth.

The understandability of endometriosis-related Instagram content is relatively high for patients at all degrees of health literacy. In comparison, the level of actionability is poor. This implies that while endometriosis content is accessible on the platform, it does not direct users on further steps to take for evaluation and management. This data suggests Instagram is useful as a community-building and support platform rather than as an educational resource for the disease.Conclusions text