Exploring the Societal Burden of Endometriosis on Women: a Metaethnography

Abstract

Background: Endometriosis affects between 1% to 10% of women worldwide; it is associated with a significant burden on the woman, her relationships, productivity, mental health, family and society. Aim:To contribute to the current understanding of the impact of endometriosis on women’s lives by integrating qualitative research findings to explore the illness experiences of women living with endometriosis. Study design:Synthesis of qualitative data using Britten’s meta-ethnography.Methods:Six bibliographic databases (Medline, Embase, CINAHL, Web of Science, Scopus and PsycINFO) and Google Scholar were searched for peer-reviewed papers published in English language from inception of until August 6th 2021. Results: Fifteen studies were included in the data synthesis. The review included a total of 354 women from fourteen countries (including South Africa, Iran, England, Australia and United States of America), of age range 16-78 years. Subjects represented diverse ethnicities, cultures and native languages distributed across socioeconomic classes. Representation of all stages of endometriosis was included.Findings incorporate the following nine categories into a conceptual model: disease symptoms; health services experience; isolation and limited social participation; limited physical functioning; a coterie of emotions; sex and intimate relationships; infertility; work life and education; coping strategies and support. Diagnostic delays, persistent symptoms, healthcare costs and inadequate education to patients about the disease; all intersect into a web of struggles and incoherence for patients. Conclusion:Women with endometriosis living in various countries report similar illness experiences; although gender roles, culture and socio-economic status may act as mediating factors that shape an individual’s illness experience.

Her, His, and Their Journey with Endometriosis: A Qualitative Study

“…Diagnosis can take seven years on average after symptom onset [4] but ranges from four to 11 years [5], suggesting a major impact on women's psychological well-being both before diagnosis and after [6]. Indeed, a recent meta-ethnography in which the illness experience of endometriosis patients across the globe was investigated stressed the negative impact of this disease on many aspects of life [7]. Speci cally, the authors found that women with endometriosis encountered a multitude of problems including infertility, di culty in maintaining intimate relationships (both emotional and physical) with their partners, psychological distress, negative emotions that could lead to suicidal ideation, low sense of self, low productivity at work, increased absenteeism, poor academic performance, social isolation, and low quality of life [7].…”