Abstract
To explore how women with congenital adrenal hyperplasia (CAH) describe their experiences of gender role behavior, psychosexual development, and intimate relationships. CAH results in increased androgen exposure in affected females, and is the most common reason for unclear sex at birth. Women with CAH have been studied to find answers to the role of androgens in psychosexual development. Nevertheless, factors that may account for the variability of outcomes in women with CAH are unclear. This was a qualitative study with 13 Swedish women (aged ≥18years) with CAH. Semi-structured interviews were analyzed using inductive content analysis. Direct quotes of patients' experiences derived from interview transcripts were sorted in categories, subcategories, and according to latent theme. The main categories were "forming identity" and "establishing relationships." Forming identity encompasses that of a girl, a tomboy, and/or a woman. Establishing relationships focuses on intimate relationships, pregnancy, and parenthood. A latent theme was interpreted as "shifting perspectives," with CAH being the main focus of some participants' lives but a side issue for others. These women's experiences are varied and describe shifting perspectives on how much CAH affects their lives. Health care providers can play an important role in helping women with CAH to separate what is caused by the condition and what is not. The long-term goal is to help girls and women to feel in control of their condition across their whole life.
Highlights
Females with congenital adrenal hyperplasia (CAH) have been extensively studied because of prenatal androgen exposure and its effects on the developing brain and later behavior
Much is known about factors affecting quantitative differences in quality of life, fertility, somatic health issues, and surgical outcomes in women with CAH.6e14 Previous research has shown that women with CAH were less contented with their genital appearance and sexual function than unaffected female controls.[10]
What were your interests as a child? What are your interests today? Do you have any thoughts about gender identity?
Summary
Females with congenital adrenal hyperplasia (CAH) have been extensively studied because of prenatal androgen exposure and its effects on the developing brain and later behavior. They have been shown to exhibit masculinized behavior and cognition1e5; a majority have a female gender identity and identify themselves as heterosexual.[6]. * Address correspondence to: Hedvig Engberg, MD, PhD, Department of Women's and Children's Health, Division of Obstetrics and Gynecology, Karolinska Institutet, 171 77 Stockholm, Sweden higher levels of problems with lubrication, pain, and penetration compared to women with diabetes.[17] when women with CAH formed relationships, they seemed to have more stable and satisfying partnerships than healthy controls.[16]
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