#endoflare – Exploring symptom flares in endometriosis and their impact: a questionnaire study

Objective: To explore the characteristics of symptom flares, and individual experiences and behaviours during flares in people with endometriosis. Design: Online questionnaire shared on patient support sites. Setting: People with a confirmed or working diagnosis of endometriosis. Population or Sample: A total of 236 responses were collected. Methods: Descriptive and comparative analysis of quantitative data, and thematic analysis of qualitative data. Main Outcome Measures: The characteristics, triggers, treatments and strategies for symptom flares as well as perceived predictability and self-efficacy in relation to flares, reasons for lack of healthcare access during flare, where advice on flares was received and quality-of-life. Results: We identified a wide variation in the characteristics of flares and of treatments/strategies for prevention. Participants reported low flare self-efficacy and low perceived predictability of flares. Only 35.3% reported receiving advice from a healthcare provider about flares. We developed 5 themes to suggest why participants did not contact healthcare provider: ‘what can they do?’, ‘I can cope, it will end’, ‘broken healthcare system’, ‘perceived dismissal and gaslighting’ and ‘symptoms stop me’. Conclusions: Flares have a large impact on quality-of-life and are clinically very important. Individuals do not commonly receive advice from healthcare providers or contact healthcare providers during a flare. More research is needed to identify mechanisms underlying flares, as well as developing and disseminating management tools to prevent, manage and treat flares.