Seeking support and treatment: A thematic analysis of tweets about the experience of endometriosis

Background: Endometriosis significantly affects women’s quality of life, yet remains underrepresented in public discourse. This study aimed to explore the lived experiences and challenges of women with endometriosis as expressed on Twitter/X. Methods: A total of 2000 tweets were collected between September 2023 to November 2023 using relevant hashtags. Tweets were thematically analyzed using NVivo to identify recurring patterns in women’s experiences with endometriosis. Results: Findings indicated that 35% of the tweets described chronic pain, difficulty completing daily tasks, and concerns about infertility. In 30% of the tweets, women also discussed various treatments, including surgery, medication, and dietary modifications, with a notable focus on weight loss and healthy eating. However, a problematic preoccupation with food and weight was observed in discussions about dietary changes. A recurring theme observed in the remaining tweets was the feeling of being dismissed by healthcare providers, with many addressing gender dynamics and bias in the medical field. Conclusion: This study highlights the power of Twitter/X as a platform for raising awareness about endometriosis. The findings underscore the need for improved healthcare services and the development of supportive communities for women with the condition.