Symptom Flares in Endometriosis: Burden, Self-Management and Barriers to Care in a Cross-Sectional Survey.

Abstract

To explore the characteristics of symptom flares, individual experiences and behaviours during flares in people with endometriosis. Online questionnaire shared on patient support sites. People with a confirmed or working diagnosis of endometriosis (a working diagnosis is given by clinicians based on symptoms/history; individuals may or may not go on to have further imaging/surgical investigations). A total of 236 responses were collected. Descriptive and comparative analysis of quantitative data, and thematic analysis of qualitative data. The characteristics, triggers, treatments and strategies for symptom flares together with perceived predictability and self-efficacy in relation to flares, healthcare access during flare, advice received and overall endometriosis-related quality-of-life. We identified a wide variation in the characteristics and treatments/strategies. 31.2% stated that they were 'not at all' confident coping with long flares, and around 1/3 of participants found flares 'not at all' predictable. Only 35.3% reported receiving advice from a healthcare provider about flares. We developed 5 themes to suggest why participants did not contact healthcare providers: 'what can they do?', 'I can cope, it will end', 'broken healthcare system', 'perceived dismissal and gaslighting' and 'symptoms stop me'. 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, in a more diverse sample, is needed to identify mechanisms underlying flares, as well as developing and disseminating management tools to prevent, manage and treat flares.