RP05 Exploring lived experience of eating disorders and disordered eating in women with polyendocrine metabolic ovarian syndrome
Abstract
Polyendocrine Metabolic Ovarian Syndrome (PMOS), formerly known as Polycystic Ovary Syndrome (PCOS), is a common multisystem disorder associated with physical and mental health outcomes. Eating disorders (EDs) are increasingly reported in women with PMOS. Despite guideline recommendations for integrated care, ED diagnoses are often missed or delayed, and care remains fragmented. This study explored lived experiences, barriers and facilitators to care among women with PMOS and EDs to better understand variability in care and inform care pathways.
Women ≥ 18 years, with PMOS and disordered eating/EDs were recruited via charities. Data from semi-structured interviews were coded and thematically analysed by two independent researchers, including a lived experience researcher.
Seventeen women participated in interviews (mean age 33.5 years; 8 White, 5 non-White). Participants described an intertwined and uncertain illness experience where PMOS symptoms and ED behaviours were difficult to distinguish, affecting help-seeking amid stigma, and diagnostic ambiguity. Many reported a self-perpetuating cycle where metabolic dysfunction, appetite dysregulation, and eating behaviours reinforced each other. Healthcare encounters were often invalidating and fragmented, prompting persistent self-advocacy. Social and cultural factors shaped body image and behaviour reinforcement. Pharmacological, clinical, and self-directed strategies yielded variable benefit; external support systems offered…
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