The social and psychological impact of endometriosis on women's lives: a critical narrative review

Lorraine Culley, Culley L, Caroline Law, Nicky Hudson, Elaine Denny, Denny E, Helene Mitchell, Mitchell H, Baumgarten M, Miriam Baumgarten, Nick Raine‐Fenning, Nick Raine-Fenning, Raine-Fenning N
Human Reproduction Update · 2013 · vol. 19(6) , pp. 625–639 · doi:10.1093/humupd/dmt027 · PMID:23884896 · W2142821170
Review OA: bronze CC0 ⤵ 523 in-corpus citations
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This review synthesizes 42 studies to highlight endometriosis's significant social and psychological impacts on women's lives, including diagnostic delay, quality of life, relationships, and mental health.

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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.

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Condition tags

endometriosischronic_pelvic_paindysmenorrheadyspareunia

MeSH descriptors

Endometriosis Delayed Diagnosis Delayed Diagnosis Emotions Emotions Endometriosis Endometriosis Endometriosis Endometriosis Female Female Humans Humans Mental Health Mental Health Pelvic Pain Pelvic Pain Pelvic Pain Pelvic Pain Prospective Studies

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 (100)

Cited by (50)

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