Women's experiences of endometriosis: a systematic review and synthesis of qualitative research
Systematic review / meta-analysis
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⤵ 158 in-corpus citations
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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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- Physician Communication, Repeated Healthcare Encounters, and Diagnostic Delay in Endometriosis: An Exploratory Cross-Sectional Analysis 2026
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- “You Don’t Really Chat About Your Pelvic Pain over Brunch”—An Exploration of Silencing, Normalization and Identity Challenges in Chronic Pelvic Pain 2026
- Elucidating behavioral and environmental barriers to clinicians' engagement in endometriosis diagnostic practices: a mixed-methods scoping review 2026
- Patient Perspectives on the Missed Opportunities and Barriers During the Diagnostic Journey: A Mixed Method Cross Sectional Study on Endometriosis in Australia 2026
- “How Much Pain Do I Really Have to be in Before I’m Taken Seriously?” Participants’ Experiences of Diagnosis and Management of Endometriosis and/or Chronic Pelvic Pain in Australian Primary Care 2026
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- From Holding On to Holding Together: Couples’ Shared Experiences of Life with Endometriosis 2026
- Missing Out: A Qualitative Study Exploring Adolescents’ and Young Women’s Experiences of Endometriosis 2026
- Pain Self-Efficacy, Pain Acceptance and Quality of Life in Endometriosis 2026
- Canabinóides no controle da dor da endometriose: relato de caso com óleo rico em Tetrahidrocanabinol (THC) 2025
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- “Just Get Pregnant, It Will Cure Your Endo”: An Exploration of Barriers to Endometriosis Care in “Involuntarily Childless” Women in the UK 2025
- Patient Perspectives on Diagnostic Delay and Inadequate Treatment: A Qualitative Research of Endometriosis in India 2025
- Layers of isolation: Exploring the lack of social support among transgender and non-binary people with endometriosis 2025
- "It's like your body is fighting against you": a cross-sectional qualitative interview study of quality of life in U.S. Black women diagnosed with endometriosis 2025
- Naturopathic Medicine for Endometriosis (NatME). Results of a pilot study 2025
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- Characteristics and Preoperative Management of Adolescent Patients with Pathology-Confirmed Endometriosis: A Multi-Institutional Study 2025
- Feasibility, acceptability, and exploratory outcomes of a virtual cognitive behavioural therapy-based group intervention for persistent fatigue in endometriosis: The Managing Fatigue in Endometriosis (MEND) programme 2025
- Unheard, uninformed and vulnerable: a qualitative study of women who seek endometriosis care outside of biomedicine 2025
- Illness perceptions among individuals with endometriosis and their longitudinal associations with psychological distress and pain 2025
- Pre-operative expectations in patients with endometriosis - a qualitative interview study 2025
- A Scoping Review of Interdisciplinary Care Programs for Women With Persistent Pelvic Pain 2025
- Humor styles and well-being of women with endometriosis during the COVID-19 pandemic 2025
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- Experience of endometriosis pain: a qualitative study 2025
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- Risk factors and nomogram construction for predicting women with chronic pelvic pain:a cross-sectional population study 2024
- The Language of Endometriosis Prevalence: How Can Gender Inclusivity and Accuracy Coexist? 2024
- Associations between stigma and depression among college-attending women with endometriosis symptoms 2024
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- Additional file 1 of A thematic synthesis of qualitative studies and surveys of the psychological experience of painful endometriosis 2024
- “I just want to stay here and sleep forever”: South African patients’ lived experiences of chronic fatigue in endometriosis 2024
- Disregarded, devalued and lacking diversity: an exploration into women’s experiences with endometriosis. A systematic review and narrative synthesis of qualitative data 2024
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Source provenance
- europepmc
- last seen: 2026-10-14T06:08:39.101224+00:00
- openalex
- last seen: 2026-06-10T17:14:06.276822+00:00
- pubmed
- last seen: 2026-10-08T21:14:18.823929+00:00
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