Women's experience of living with endometriosis : A non-systematic literature review

Background Endometriosis is a chronic gynaecological condition affecting approximately 10% of women of reproductive age, corresponding to about 190 million individuals globally. Diagnosis is often delayed, and healthcare encounters are frequently characterized by limited knowledge, normalisation of symptoms, and insufficient support. As nurses meet these women in a variety of healthcare settings, it is important from a nursing perspective to understand what it means to live with endometriosis and how the disease affects women’s daily lives. Aim To describe women’s experiences of living with endometriosis. Method A non-systematic literature review was conducted, including ten scientific original articles with a qualitative methodological approach. The articles were identified through database searches in PubMed and CINAHL. Quality appraisal was performed using Sophiahemmet University College’s assessment framework, and the material was subsequently compiled and presented through an integrated data analysis. Results Three overarching categories were identified: Encounters with healthcare, Impact of the disease on daily life, and Personal coping strategies. The results show that women often experienced that their symptoms were not taken seriously, leading to feelings of invalidation and psychological burden. Experiences of pain and the unpredictability of the disease significantly affected women’s daily lives and life situations, prompting many to develop personal strategies to manage the disease and its consequences. Conclusions Endometriosis affects multiple aspects of women’s daily lives and quality of life. Healthcare encounters in which women are listened to, acknowledged, and provided with clear information are experienced as empowering and supportive. Women develop personal strategies for managing the disease, where acceptance, self-care, and seeking knowledge are central. The literature review highlights the nurse’s role in establishing interpersonal relationships and active listening, which can contribute to alleviating suffering and strengthening hope.