Abstract
AIM: To explore the experiences of sexual health and intimate relationships in women with lipedema. DESIGN: A qualitative interview study. METHODS: Sixteen women with lipedema recruited from a national lipedema association group in Sweden participated. Data were collected between October 2023 and February 2024 and analysed using content analysis. RESULTS: Four main categories were identified. Being burdened by body shame highlighted the women's body dissatisfaction, difficulties in self-acceptance and shame when being naked in front of their partners. Being hindered by an aching and heavy body captured the experiences of bodily pain and heaviness in intimate situations. Being torn between desire and avoidance revealed that the women longed for intimacy but adopted different strategies to avoid it. Being affected by what is said and what is left unsaid showed the role of the partner's approach as well as the strain of not discussing sexual problems with partners or healthcare providers. CONCLUSION: Women with lipedema experience physical, psychological and relational challenges in sexual life and intimacy. Still, these challenges remain unaddressed in healthcare settings. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: Nurses and midwives should, in their unique role in encountering women throughout their lifespans, address and invite dialogues on sexual-related concerns of women affected by lipedema. IMPACT: The study findings provide insights into how lipedema affects women's sexual health and intimate relationships and offer new knowledge that can be applied when planning targeted interventions to promote the sexual health and well-being of women with lipedema. REPORTING METHOD: Adherence to the EQUATOR guidelines and COREQ checklist. PATIENT OR PUBLIC CONTRIBUTION: Two patient representatives from a lipedema association group contributed to this study by distributing study information to their members.