Welcome to the EndoHood: A Scoping Review of Social Media Spaces for those with Endometriosis

Introduction: Social media has a significant capacity to influence healthcare delivery. The development of online communities is well documented for conditions including asthma and stroke. Less is known about social media use amongst those with endometriosis. This review explores internet groups as an under-recognised supplement to healthcare, prompting greater clinician engagement online. Methods: This scoping review was conducted according to the methodology developed by Arksey & O’Malley. It is the first piece of work bringing together commentary on endometriosis-related social media use and existing frameworks used to analyse other online communities. Relevant studies were identified through searches of MEDLINE and EMBASE. As an exploratory piece, there were no predetermined exclusion criteria, provided articles were in English or translated into English. A total of 26 articles from 2004-2024 were included. Results: The literature on social media posts about chronic conditions typically explores the accuracy of medical content or offers sociological commentary. Nine articles assessed the evidence base of endometriosis posts across various platforms. All raised concerns about the reliability of information shared and called for expert engagement in the dissemination of educational materials online. Discussion: Three key themes emerged from the analysis of online communities. First, online groups are perceived as an antidote to unmet needs in endometriosis patients accessing traditional healthcare, including problem-solving and psychosocial support. Further, such groups cultivate a sense of kinship amongst affected individuals. The exchange of experiences and peer validation of symptoms contributes to a collective narrative. Finally, social media can facilitate open conversation around sensitive topics through anonymity within these communities. Conclusion: Endometriosis is a condition with the potential for profound psychological and psychosexual impact. Social media communities create a space in which private suffering can become public and taboo subjects explored. Clinicians have a responsibility to engage both with factual content curation and in addressing unmet care needs expressed by patients online.