ArticleBJOG : an international journal of obstetrics and gynaecology2026
Symptom Flares in Endometriosis: Burden, Self-Management and Barriers to Care in a Cross-Sectional Survey.
Article in BJOG : an international journal of obstetrics and gynaecology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
objectiveTo explore the characteristics of symptom flares, individual experiences and behaviours during flares in people with endometriosis.
designOnline questionnaire shared on patient support sites.
settingPeople 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). POPULATION OR SAMPLE: A total of 236 responses were collected.
methodsDescriptive and comparative analysis of quantitative data, and thematic analysis of qualitative data.
main outcome measuresThe 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.
resultsWe 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'.
conclusionsFlares 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.
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