Disregarded, devalued and lacking diversity: an exploration into women’s experiences with endometriosis. A systematic review and narrative synthesis of qualitative data

Abstract

Endometriosis is a burdensome gynaecological condition linked to the culturally variable concepts of menstruation and reproduction. Despite this, qualitative endometriosis research has been concentrated in high-income, anglophone countries. This systematic review and narrative synthesis primarily aimed to provide updated insights on endometriosis experiences, whilst secondarily investigating improvements in research diversity and reporting of socio-cultural experiences. Six online databases (PubMed, MEDLINE, PsycINFO, Scopus, Web of Science and CINAHL) were searched on 27th March 2023 for English, peer-reviewed articles published between January 2013 and March 2023. An updated search was performed on 24th March 2024 to extend the inclusion date to March 2024. English-written dissertation and thesis papers were also eligible. Included studies investigated first-hand endometriosis experiences of women or those assigned female at birth using a qualitative or mixed-method design. Participants were aged 16 and above, with a surgical diagnosis or histological confirmation. Additional relevant articles were identified from the reference lists of eligible articles. Risk of bias was assessed using the CASP tool for qualitative research. 26 papers reporting on 22 studies were included (569 participants, age range: 17–55). Greater diversity in study geographies was evident compared to previous reviews despite largely recruiting from high-income countries via clinical settings. Thematic analysis using inductive coding captured significant experiences, particularly regarding anticipated infertility and positive healthcare encounters, and revealed partial insight into socio-cultural pressures and experiences associated with endometriosis. However, significant evidence gaps in disease coping and management mechanisms were evident, specifically regarding partner support and alternative intimacy strategies. Furthermore, participant homogeneity contributed to an incomplete evidence base across sexualities, ages, ethnicities, and socio-economic backgrounds. Findings highlight that sufferers continue to be left unsupported medically and socially. Future priorities should focus on addressing the participant diversity gap, providing comprehensive disease guidance, empowering sufferers in patient-provider settings and improving healthcare professionals’ disease knowledge.