Aims

The aim of this study is to extend understandings of the impact of surgically diagnosed endometriosis on women’s social lives, work and education.

Methods

Participants (N = 200; average age: 27.1 years (±6.72)) were recruited from a range of sources, including social media and private women’s health clinics. They completed an online survey comprising seven open-ended questions about how experience with endometriosis impacted (i) overall life; (ii) family relationships; (iii) friendships; (iv) attendance at social events; (v) engagement in leisure activities; (vi) work; and (vii) education. Data were analysed using inductive classical content analysis.

Results

The data set contained 1400 discrete codable statements, with 19% of women reporting some form of social impact. A key result was the role of family and friends, both positive and negative, as well as the positive role that the workplace/educational institution can play (noted by 50% of participants). Findings highlight the negative impact on leisure activities, reported by 86% of women. The exhaustion of sick and unpaid leave was reported by 41% of women.

Conclusion

This study highlights the impact of endometriosis on the social and economic lives of Australian women and underscores the importance of the comprehensive response recommended in the National Action Plan for Endometriosis.