This PhD project examines how women with lipedema experience conservative and surgical treatment. The project explores quality of life, functioning, rehabilitation, coping, and health following treatment.
Lipedema is a chronic condition that primarily affects women and may lead to pain, reduced functioning, stigma, and lower quality of life.
Despite growing awareness, little is known about how women experience different treatment options. This qualitative study explores experiences with conservative treatment, including lifestyle changes and compression therapy, as well as surgical treatment.
Through individual semi-structured interviews, we aim to gain insight into how treatment influences everyday life, health, physical functioning, and quality of life. The knowledge generated may contribute to improved care and clinical practice.
Participants
More about the project
Lipedema is a chronic condition that affects almost exclusively women. It is characterized by disproportionate and symmetrical fat accumulation, commonly in the legs, hips, buttocks, or arms, often accompanied by pain, tenderness, and reduced mobility.
Many women experience stigma, psychological distress, and reduced quality of life. In addition, lipedema is frequently underdiagnosed or misdiagnosed as obesity.
There is currently no cure for lipedema. Treatment mainly consists of conservative approaches such as physical activity, dietary management, compression therapy, and manual lymphatic drainage. Some patients also undergo liposuction to reduce symptoms and improve functioning.
However, there is still limited evidence regarding the impact of these treatments, particularly from the patients' own perspectives.
Aim
The aim of this study is to explore how women with lipedema experience conservative and surgical treatment.
Particular attention is paid to participants' own descriptions of treatment, recovery, challenges, and everyday life experiences.
By examining both positive and negative experiences, the study seeks to develop a deeper understanding of what treatment means to women living with lipedema.
Methods
This is a qualitative retrospective study. Women aged 18–65 years diagnosed with lipedema will be recruited through patient organizations and social media. Participants must have experience with conservative and/or surgical treatment.
Data will be collected through individual semi-structured interviews focusing on treatment experiences, recovery, coping, and meaningful events throughout the disease trajectory.
The interviews will be analysed using thematic analysis and other qualitative approaches where appropriate.
Significance
The project will generate new knowledge about women's experiences with lipedema treatment. The findings will be relevant for healthcare professionals in both primary and specialist healthcare services, patient organizations, and policymakers.
The results may contribute to improved care, evidence-informed treatment pathways, and future clinical guidelines for lipedema. Findings will be disseminated through international peer-reviewed journals and relevant professional networks.
