Assessing stigma in individuals living with endometriosis: Development and initial testing of the Stigma Scale for Endometriosis

H. Deniz Koçaş, Lillian Polanco-Roman, Marci Lobel, Tamer Seçkin, Lisa R. Rubin
In: Journal of Endometriosis and Uterine Disorders · 2026 · vol. 15 , pp. 100164 · doi:10.1016/j.jeud.2026.100164 · W7160069440
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⚙ AI-generated summary by claude@2026-06, 2026-06-06 ⓘ

This study describes the development and initial validation of a new scale designed to measure stigma experienced by individuals diagnosed with endometriosis.

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Abstract

Objective Stigma contributes to poor mental health among many individuals with endometriosis, yet there are few dedicated measures of endometriosis-related stigma for assessment and intervention. To create an appropriate scale, we adapted the Stigma Scale for Chronic Illness (SSCI) which measures experienced and self (internalized) stigma, that are especially pertinent to endometriosis. Materials and methods U.S.-based adults ( M ag e = 33.9; SD age = 7.8; 73.7% non-Hispanic White) with endometriosis ( N = 410) completed an online adapted version of the SSCI, the Stigma Scale for Endometriosis (SSE), and provided information about their disease. Internal consistency and factor structure were examined with exploratory factor analyses. Results Analyses revealed two interpretable factors with item loadings above 0.30 from all but one item, which was removed. Participants reported moderate levels of self-stigma (11 items, ɑ = 0.89; M = 3.31 on the 1–5 response scale) with good variability ( SD = 0.77), and lower levels of experienced stigma (9 items, ɑ = 0.92; M = 1.94), with similar variability ( SD = 0.80). Self-stigma and experienced stigma were highly correlated ( r = 0.59, p < 0.001). They exhibited somewhat different patterns of association with sociodemographic and disease variables. Conclusion The SSE reliably differentiates experienced from self-stigma, which has stronger associations with factors such as age of first symptoms and years to diagnosis. The SSE offers a vital tool to facilitate research and intervention promoting mental health for individuals living with endometriosis.

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Condition tags

endometriosis

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