The Role of Social Media in Endometriosis: A Systematic Review of Users, Content, Information Quality, and Content Creators.

OBJECTIVE

To systematically review qualitative and quantitative evidence on the role of social media (SM) in endometriosis awareness and disease management.

DATA SOURCES: A systematic search was conducted in PubMed and Scopus up to December 28, 2025.

METHODS

Original studies investigating the role of SM in endometriosis were included. Exclusion criteria comprised nonoriginal articles, non-English publications, analyses limited to single webpages, and studies lacking relevant data. Methodological quality of individual studies was assessed using the Newcastle-Ottawa Scale (NOS), Mixed Methods Appraisal Tool (MMAT), and Critical Appraisal Skills Programme (CASP) checklist. Four domains were examined: (i) characteristics of SM users, (ii) types of content shared, (iii) information quality, and (iv) type of content creators.

TABULATION, INTEGRATION, AND

RESULTS

Twenty-one studies performed SM content analyses, while 5 used surveys/interviews. SM users were predominantly young women and frequently reported psychological burden, diagnostic delays (>10 years), and negative healthcare experiences. The most commonly reported SM themes were personal experiences (n = 15), symptoms (n = 11), infertility/fertility concerns (n = 10), disease management and treatments (n = 14), emotional support and advocacy (n = 14), and distrust toward healthcare professionals (HCPs) (n = 9). Dysmenorrhea was the most frequently discussed symptom, while surgery, hormonal therapies, and complementary treatments represented the main treatment-related topics. Overall information quality was heterogeneous, with approximately 23% to 30% of content containing misinformation, particularly regarding treatments and alternative therapies. Ten studies evaluated content creators: non-HCPs generated most SM content (80%-95%) and generally showed higher engagement, whereas HCP-generated content demonstrated greater accuracy, reliability, and educational quality.

CONCLUSIONS

Social media play a key role in endometriosis awareness and disease management by providing peer support. However, information quality is variable and often suboptimal. Greater involvement of healthcare professionals is needed to improve reliability and counterbalance misinformation.