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Women's experiences of endometriosis: a systematic review and synthesis of qualitative research
  1. Kate Young1,
  2. Jane Fisher2,
  3. Maggie Kirkman3
  1. 1PhD Candidate, The Jean Hailes Research Unit, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
  2. 2Director, The Jean Hailes Research Unit, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
  3. 3Senior Research Fellow, The Jean Hailes Research Unit, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
  1. Correspondence to Ms Kate Young, The Jean Hailes Research Unit, Monash University, 6th Floor, Alfred Centre, 99 Commercial Road, Melbourne, VIC 3004, Australia; kate.young{at}monash.edu

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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