Women's experiences of endometriosis: a systematic review and synthesis of qualitative research

Kate Young, Jane Fisher, Maggie Kirkman
The journal of family planning and reproductive health care · 2014 · vol. 41(3) , pp. 225–234 · doi:10.1136/jfprhc-2013-100853 · PMID:25183531 · W2151338363
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⚙ AI-generated summary by claude@2026-06, 2026-06-06 ⓘ

This systematic review synthesized qualitative research to identify four themes of women's endometriosis experiences and highlight gaps in understanding for specific populations.

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Abstract

BACKGROUND: Endometriosis is experienced by approximately 10% of women worldwide; it is associated with significant burden on the woman, her family, and society. AIM: The aim of this systematic review was to synthesise the available qualitative literature to increase our understanding of the effects of endometriosis on women's lives. METHODS: Seven social science and medical databases (PubMed, Medline, CINAHL, Web of Science, ScienceDirect, PsycInfo and Embase) and Google Scholar were searched for peer-reviewed papers published in English of research using qualitative methods. RESULTS AND CONCLUSIONS: Eighteen papers reporting 11 studies met the inclusion criteria. Participant numbers ranged from 15 to 61 women, all recruited from support groups and specialised clinics. Studies were conducted in high-income, Anglophone countries. The review identified four prominent themes: Life, Symptoms, Medical Experience, and Self. Women's reported experiences demonstrated opportunities for enhancing current clinical practice, including improved education about endometriosis for health professionals, the need to take a comprehensive approach to pain treatment, and initiating appropriate discussion of the impact on sex life. Significant evidence gaps were identified: there was inadequate investigation of women's experiences of endometriosis-associated infertility and of the impact of reduced social participation on perceived support and emotional well-being, and limited or no inclusion of the experiences of adolescent and post-menopausal women, women from low socioeconomic backgrounds, women who do not identify as Caucasian, and non-heterosexual women.

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Condition tags

dyspareuniaendometriosisinfertility

MeSH descriptors

Endometriosis Delayed Diagnosis Dyspareunia Dyspareunia Dyspareunia Endometriosis Endometriosis Female Humans Infertility, Female Infertility, Female Qualitative Research Social Participation

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (49)

Cited by (50)

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License: CC0 · commercial use OK