title: The social and psychological impact of endometriosis on women's lives: a critical narrative review.
abstract: BACKGROUND Endometriosis is a chronic condition affecting between 2 and 17% of women of reproductive age. Common symptoms are chronic pelvic pain, fatigue, congestive dysmenorrhoea, heavy menstrual bleeding and deep dyspareunia. Studies have demonstrated the considerable negative impact of this condition on women's quality of life (QoL), especially in the domains of pain and psychosocial functioning. The impact of endometriosis is likely to be exacerbated by the absence of an obvious cause and the likelihood of chronic, recurring symptoms. The aims of this paper are to review the current body of knowledge on the social and psychological impact of endometriosis on women's lives; to provide insights into women's experience of endometriosis; to provide a critical commentary on the current state of knowledge and to make recommendations for future psycho-social research. METHODS The review draws on a method of critical narrative synthesis to discuss a heterogeneous range of both quantitative and qualitative studies from several disciplines. This included a systematic search, a structured process for selecting and collecting data and a systematic thematic analysis of results. RESULTS A total of 42 papers were included in the review; 23 used quantitative methods, 16 used qualitative methods and 3 were mixed methods studies. The majority of papers came from just four countries: UK (10), Australia (8), Brazil (6) and the USA (5). Key categories of impact identified in the thematic analysis were diagnostic delay and uncertainty; 'QoL' and everyday activities; intimate relationships; planning for and having children; education and work; mental health and emotional wellbeing and medical management and self-management. CONCLUSIONS Endometriosis has a significant social and psychological impact on the lives of women across several domains. Many studies have methodological limitations and there are significant gaps in the literature especially in relation to a consideration of the impact on partners and children. We recommend additional prospective and longitudinal research utilizing mixed methods approaches and endometriosis-specific instruments to explore the impact of endometriosis in more diverse populations and settings. Furthermore, there is an urgent need to develop and evaluate interventions for supporting women and partners living with this chronic and often debilitating condition.
authors.affiliation: School of Applied Social Sciences, Faculty of Health and Life Sciences, De Montfort University, Hawthorn Building, The Gateway, Leicester LE1 9BH, UK.
authors.forename: Lorraine
authors.initials: L
authors.lastname: Culley
authors.forename: Caroline
authors.initials: C
authors.lastname: Law
authors.forename: Nicky
authors.initials: N
authors.lastname: Hudson
authors.forename: Elaine
authors.initials: E
authors.lastname: Denny
authors.forename: Helene
authors.initials: H
authors.lastname: Mitchell
authors.forename: Miriam
authors.initials: M
authors.lastname: Baumgarten
authors.forename: Nick
authors.initials: N
authors.lastname: Raine-Fenning
mesh_terms: D057210:Delayed Diagnosis; D004644:Emotions; D004715:Endometriosis / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D005260:Female; D006801:Humans; D008603:Mental Health; D017699:Pelvic Pain / Q000175:diagnosis / Q000209:etiology; D011446:Prospective Studies; D036301:Qualitative Research; D011788:Quality of Life; D012648:Self Care; D012725:Sexual Behavior
keywords: chronic illness; endometriosis; psychological; quality of life; social