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Lipoedema is a chronic disease in adipose tissue that almost exclusively affects women during periods of hormonal alterations. Its main symptoms include an abnormal accumulation of subcutaneous fat in the buttock, hips, and legs, which is associated with pain, swelling, and easy bruising. Herein, a grading in three stages is used to determine disease progression. Problematically, lipoedema manifestations are often confused with lifestyle-induced obesity, which is why the various health problems among affected women often remain unrecognized. Overall, research on lipoedema is scarce. As such, this study examined the health, health-related quality of life (HRQOL), and sense of coherence (SOC) among women with lipoedema.
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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.
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Lipoedema is a loose connective tissue disease primarily affecting women characterized by an abnormal build-up of painful fat in the legs and arms. In healthcare, lipoedema is often confused with obesity, and today, diagnostic tools and standardized guidelines for adequate treatments are lacking. Still, research on how affected women manage their health problems and whether they are satisfied with their care remains sparse. Therefore, this study aimed to contribute knowledge on healthcare experiences, and their use and self-reported effects of self-care and treatments among women with lipoedema.
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Lipedema is a chronic disease in adipose tissue affecting women. The distinctive body appearance in lipedema, often mistaken for obesity, may be detrimental to social life. In our online cross-sectional survey study, conducted from June to September 2021 among 245 women with lipedema, we found significantly more health-related stigma compared to an aged-matched general female population (N = 1872), leading to an overall lower quality of life. Conversely, strong social support was associated with better social and emotional functioning. As such, healthcare professionals must, even in the early stages, recognize this disease and address its impact on psychosocial health and well-being.
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Topic
- Lipedema (4)
- Open Access (3)
- Original studies and data (3)
- Patient journey (1)
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- Journal Article (4)
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- Between 2000 and 2025 (2)
- Unknown (2)
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