Viral Voices: An Exploration of TikTok Content Creators’ Narratives of In-Clinic Endometriosis Experiences

People with endometriosis face a twofold challenge: managing a chronic, often debilitating disease while navigating a healthcare system that was never designed with them in mind. As an invisible disease, patients with endometriosis are dependent on doctors to believe and validate their symptoms, yet care is frequently marked by dismissal, diagnostic delays, and harm. Increasingly, people are turning to social media to share these experiences. TikTok is emerging as an important yet under-explored space where endometriosis stories are shared. This project explores how TikTok content creators talk about their in-clinic endometriosis experiences. Grounded in social constructionism and informed by poststructural feminism, this project purposively sampled publicly available TikTok videos describing firsthand in-clinic endometriosis experiences, yielding a final sample of 85 videos. Through reflexive thematic analysis, four themes were developed and organised into three analytic sections. In Who Gets to Know? Contesting Epistemic Authority, the themes Doctor Knows Best and We Know present a tension in which both doctors and creators were positioned as having epistemic authority; though in clinical settings, it was doctors who were ultimately allowed to know. In Constructing Care Under Medical Authority, the theme Care Is Conditional showed how doctors’ authority shaped access to care, producing predominantly disempowering encounters alongside rare moments of empowerment. In Responsibilising Care, the theme A Two Pronged Battle demonstrated how creators described carrying the responsibility of securing care through self-advocacy in the clinic and storytelling on TikTok. Overall, creators’ talk constructs in-clinic endometriosis experiences as shaped by constraint and resistance, revealing the influence of medical authority while highlighting creators’ efforts to assert control over their diagnosis and treatment. Their talk highlights how power operates unevenly in clinical encounters, suggesting that improving endometriosis care should begin with practices that expand patients’ space for agency.