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Stigma Associated with Classical Congenital Adrenal Hyperplasia in Women’s Sexual Lives

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Abstract

The risk of intersex-related stigma often serves as social indication for “corrective” genital surgery, but has not been comprehensively documented. In preparation for the development of an intersex-specific stigma assessment tool, this qualitative project aimed to explore stigma in girls and women with classical congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency. As part of a comprehensive follow-up project, 62 adult women with classical CAH (age range 18–51 years) took part in an open-ended retrospective interview focusing on the impact of CAH and its treatment on various aspects of girls’ and women’s lives. Deductive qualitative content analysis (Patton, 2014) of de-identified transcripts involved categorization of three types of stigma: experienced, anticipated, and internalized. Two-fifths of the participants reported CAH-related stigma in romantic/sexual situations. Stigma enactment by romantic partners occurred in reaction to both genital and non-genital sex-atypical features of CAH and sometimes included explicit questioning of the women’s true gender. Stigma anticipation by the women and their related avoidance of nudity, genital exposure, and romantic involvement altogether were frequent. Internalization of stigma occurred as well. In conclusion, the data suggest that many women with CAH experience, anticipate, and/or internalize intersex-related stigma in the context of their romantic/sexual lives.

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Acknowledgements

The study was supported in part by USPHS Grant HD-38409 and Dr. Khuri by a postdoctoral fellowship T32 MH18264. Susan W. Baker, Ph.D., served as the primary interviewer. We thank all participants for their contribution of effort, time, and data to this study.

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Authors and Affiliations

  1. New York State Psychiatric Institute/Department of Psychiatry, College of Physicians and Surgeons of Columbia University, 1051 Riverside Drive, Unit 15, New York, NY, 10032, USA

    Heino F. L. Meyer-Bahlburg, Jananne Khuri, Jazmin Reyes-Portillo & Anke A. Ehrhardt

  2. Department of Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY, USA

    Maria I. New

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  1. Heino F. L. Meyer-Bahlburg
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  2. Jananne Khuri
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  3. Jazmin Reyes-Portillo
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  4. Anke A. Ehrhardt
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  5. Maria I. New
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Correspondence to Heino F. L. Meyer-Bahlburg.

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Meyer-Bahlburg, H.F.L., Khuri, J., Reyes-Portillo, J. et al. Stigma Associated with Classical Congenital Adrenal Hyperplasia in Women’s Sexual Lives. Arch Sex Behav 47, 943–951 (2018). https://doi.org/10.1007/s10508-017-1003-8

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  • DOI: https://doi.org/10.1007/s10508-017-1003-8

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