Stages of lipoedema: experiences of physical and mental health and health care

PURPOSE: Lipoedema is a progressive adipose (fat) disorder, and little is known about its psychological effect. This study aimed to determine the experiences of physical and mental health and health care across stages of lipoedema. METHODS: Cross-sectional, secondary data from an anonymous survey (conducted 2014–2015) in Dutch and English in those with self-reported lipoedema were used (N = 1,362, Mdnage = 41–50 years old, 80.2% diagnosed). χ(2) analyses of categorical data assessed lipoedema stage groups ‘Stage 1–2’ (N = 423), ‘Stages 3–4’ (N = 474) and ‘Stage Unknown’ (N = 406) experiences of health (physical and psychological), and health care. RESULTS: Compared to ‘Stage 1–2’, ‘Stage 3–4’ reported more loss of mobility (p = < .001), pain (p = < .001), fatigue (p = .002), problems at work (p = < .001) and were seeking treatment to improve physical functioning (p = < .001) more frequently. ‘Stage 3–4’ were more likely to report their GP did not have knowledge of lipoedema, did not take them seriously, gave them diet and lifestyle advice, dismissed lipoedema, and treated them ‘badly’ due to overweight/lipoedema compared to ‘Stage 1–2’ (p = < .001). ‘Stage 3–4’ were more likely to report depression (p = < .001), emotional lability (p = .033) eating disorders (p = .018) and feeling lonelier, more fearful, and stayed at home more (p = < .001) and less likely to have visited a psychologist (p = < .001) compared to ‘Stage 1–2’. CONCLUSIONS: A divergent pattern of physical and psychological experiences between lipoedema stages reflects physical symptom differences and differences in psychological symptoms and health care experiences. These findings increase the understanding of lipoedema symptoms to inform psychological supports for women with lipoedema in navigating chronic health care management.