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

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

Research output: Contribution to journalArticle

5 Scopus citations

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.

Original languageEnglish
Pages (from-to)943-951
Number of pages9
JournalArchives of Sexual Behavior
Volume47
Issue number4
DOIs
StatePublished - 1 May 2018

Keywords

  • Congenital adrenal hyperplasia
  • Disorders of sex development
  • Intersexuality
  • Stigma

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