Background: Lipedema is a chronic disease of adipose tissue, predominantly affecting women. Its main symptoms include an abnormal accumulation of inflammatory fat in the buttocks, hips, legs, and sometimes arms, which is associated with pain, heaviness, and easy bruising. Lipedema is often misdiagnosed as obesity, and standardized guidelines for its diagnosis and healthcare treatment are currently lacking, risking affected women not receiving adequate care and support. Still, the experiences of women living with lipedema remain unexplored.

Aim: The overall aim of this thesis was to explore health, quality of life, social life, and healthcare experiences among women with lipedema. Methods: This thesis is based on four studies with quantitative, qualitative, and mixed methods designs. The research participants were women with lipedema aged 18 years or older who were recruited from lipedema association groups in Sweden. In studies I–III, data were collected through a national online survey addressing health, health-related quality of life, sense of coherence, experiences of healthcare, self-care and treatments, health-related stigma, and social support. In study IV, data was collected through semi-structured interviews on women’s experiences of sexual health and intimate relationships while living with lipedema.

Results: Women with lipedema reported substantial physical burden, including chronic pain, swelling, leg heaviness, numbness, cold skin, feeling cold, easy bruising, and sleep problems. In addition, almost all participants reported having comorbidities. Moreover, the results revealed the extent of diagnostic delays, often spanning decades, and inadequate healthcare support, leading to dissatisfaction and unmet needs. Many women strived to manage their symptoms through self-care. However, lipedema treatments performed by healthcare professionals were reported to be more effective, but access to them was limited. Compared to an age-matched female general population, women with lipedema reported a significantly lower health-related quality of life and significantly higher levels of health-related stigma. Lipedema also negatively impacted sexual health and intimate relationships, with the affected women experiencing body shame, avoidance of intimacy, and emotional distress.

Conclusion: Lipedema significantly and negatively impacts health, quality of life, and social life. Despite the complex health issues affecting daily life, many affected women lack prerequisite care and support. Increased knowledge and competence among healthcare professionals regarding this disease, a multidisciplinary approach, and equal access to care and treatment are required to ensure early detection and provide support for women with lipedema. Keywords: Health, health-related quality of life, lipedema, mixed methods design, national survey, patient experiences, quality of care, sense of coherence, sexual health, social support, stigma, women’s health.