Assessing Stigma in Individuals Living with Endometriosis: Development and Initial Testing of the Stigma Scale for Endometriosis - 28/04/26

Doi : 10.1016/j.jeud.2026.100164

H. Deniz Koçaş ^a,^b,⁎ , Lillian Polanco-Roman ^c, Marci Lobel ^d, Tamer Seçkin ^e,^f, Lisa R. Rubin ^b

^a Department of Psychology, Dyson College of Arts and Sciences, Pace University, New York, NY 10038, USA

^b Department of Clinical Psychology, The New School for Social Research, New York, NY 10011, USA

^c Department of Applied Psychology, Steinhardt School of Culture, Education, and Human Development, New York University, New York, NY 10003, USA

^d Department of Psychology and Department of Obstetrics, Gynecology and Reproductive Medicine, Stony Brook University, Stony Brook, NY 11794, USA

^e Department of Gynecology, Lenox Hill Hospital, New York, NY 10075, USA

^f The Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, 11549, USA

^⁎ Corresponding author at: Department of Psychology, Dyson College of Arts and Sciences, Pace University, New York, NY 10038, USA. Department of Psychology Dyson College of Arts and Sciences Pace University New York NY 10038 USA

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Highlights

•	The Stigma Scale for Endometriosis is an internally consistent measure of stigma.
•	Lower income, education, and age are each associated with greater stigma.
•	Stigma is higher with greater pain frequency and longer pain duration.
•	Earlier symptom onset and longer time to diagnosis correlate with greater stigma.

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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 to 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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Keywords : Endometriosis, stigma, mental health, psychometrics.