Struggles in Accessing Healthcare, the Experiences Made by Women with Lipedema in Sweden - A Qualitative Study

BACKGROUND: Lipedema is a relatively unknown condition, often leading to misdiagnosis and a lack of proper treatment. PURPOSE: To explore the experiences of seeking healthcare support and treatment among women with a physician-verified diagnosis of lipedema. METHODS: Twelve women with lipedema, verified by medical examination, were interviewed using semi-structured interviews. The transcribed data was analyzed using qualitative content analysis with an inductive approach and abstracted to visualize manifest and latent meanings. RESULTS: The theme "Pushing the barricaded doors to treatment and care while fighting to illuminate the shadows of lipedema" describes the experiences of women being denied subsidized treatment and disregarded by healthcare professionals. The theme is based on three categories "Experiencing societal injustice and gatekeeping in healthcare services", "Combating prejudice and stigmatization with increased awareness", and "Having a solid desire for improved and affordable treatment options". Women with lipedema described feelings of being abandoned by decision-makers and healthcare. When in need of symptom relief, women with lipedema searched and attempted different therapies, and when treatment were available, the women would have to pay for it themselves. CONCLUSION: Lipedema remains an unknown disease with few available treatments in subsidized healthcare. Lack of experience regarding lipedema among healthcare professionals and their failure to assess the condition risks damaging the confidence of affected women. Therefore, increased awareness and education of healthcare personnel to increase the clinical recognition of lipedema are necessary first steps to reducing misdiagnosis, improve patient satisfaction, and the availability of care among patients with lipedema.