Endometriosis- "Either way a tragedy"? A qualitative social media analysis of endometriosis perceptions in Germany
Till Neugebauer1, Valeria Schellenberg2, Alena Allak2
1Faculty of Health, School of Medicine, Health Services Research, Witten/Herdecke University, Witten, Germany. till.neugebauer@uni-wh.de.
Background:
Endometriosis is one of the most common diseases in women of reproductive age. Those affected suffer from a variety of symptoms that can have a challenging impact on different areas of life. Social media such as Instagram, TikTok and YouTube offer affected women a platform for sharing their condition and increasing its visibility. This study examines how endometriosis is communicated in the comment sections of such posts on social media in Germany in order to better understand the reality of the lives of those affected.
Methods:
300 comments from Instagram, TikTok and YouTube were evaluated using summarizing qualitative content analysis. Data collection took place between October and November 2024.
Results:
Four categories were identified that shaped the exchange on social media. These included psychological and physical stress, criticism of healthcare, social impact and coping with endometriosis.
Conclusions:
Endometriosis remains stigmatised as a "women's disease", which makes recognition and prioritization in the healthcare system difficult. The reduction to menstruation-related complaints hinders the treatment of endometriosis-related symptoms, while pejorative communication by doctors increases the burden on those affected. While social media enables open dialogue and peer support, it also has potential to spread misinformation, influencing health decisions and fostering scepticism toward medical advice. Addressing these challenges requires a multifaceted public health response: destigmatising endometriosis through education, improving medical training, strengthening diagnostic pathways, and raising awareness in society.
