Identity, sexuality, and parenthood in women with congenital adrenal hyperplasia
Open accessAbstract
STUDY OBJECTIVE: 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. DESIGN, SETTING AND PARTICIPANTS: This was a qualitative study with 13 Swedish women (aged ≥18 years) with CAH. Semi-structured interviews were analyzed using inductive content analysis. MAIN OUTCOME MEASURES: Direct quotes of patients' experiences derived from interview transcripts were sorted in categories, subcategories, and according to latent theme. RESULTS: 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. CONCLUSION: 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.
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The prevalence of overweight and obesity are greater in adults with CAH in the UK and Sweden but similar to the general population in the US and France.
“The prevalence of overweight and obesity are greater in adults with CAH in the UK (360) and Sweden (671) but similar to the general population in the US (217) and France (626,672).”
From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [360]
A few studies have reported normal or even high BMD, but most have shown low BMD at all or at least some sites in patients with CAH.
“A few studies have reported normal (704-709) or even high BMD (710), but most have shown low BMD at all or at least some sites (209,217,360,646,711-722).”
From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [360]
Mineralocorticoid requirements change from birth to adolescence.
“Importantly, mineralocorticoid requirements, which change from birth to adolescence, should be reassessed in adolescence/young adulthood to avoid mineralocorticoid over-and under-replacement (360).”
From Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management (2022) · cites this paper as [360]
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Congenital Adrenal Hyperplasia—Current Insights in Pathophysiology, Diagnostics, and Management
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- Authors
- Engberg, H., Möller, A., Hagenfeldt, K., Nordenskjöld, A., & Frisén, L.
- Affiliations
- Karolinska Institutet (SE)
- Marie Cederschiöld University (SE)
- Karolinska University Hospital (SE)
- Corresponding author
- Engberg, Hedvig
- Venue
- Journal of Pediatric and Adolescent Gynecology
- Publisher
- Elsevier BV
- Published
- 2020-10
- Volume
- 33
- Issue
- 5
- Pages
- 470-476
- ISSN
- 0932-8610 (ISSN-L)
- 1083-3188
- OpenAlex
- W3032408430
- Cited by
- 15
- References
- 55
- Citations by year
- 2025: 3 · 2024: 3 · 2023: 5 · 2022: 1 · 2021: 3
- FWCI
- 0.73
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Journal of Pediatric and Adolescent Gynecology (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Funders
- Karolinska Institutet
- Vetenskapsrådet (523-2011-3807)
- Svenska Sällskapet för Medicinsk Forskning
- Svenska Läkaresällskapet
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Molecular Biology › Sexual Differentiation and Disorders
- Social Sciences › Psychology › Social Psychology › LGBTQ Health, Identity, and Policy
- Health Sciences › Medicine › Reproductive Medicine › Ovarian function and disorders
- Keywords
- congenital adrenal hyperplasia, gender identity, psychosexual development, androgen exposure, intimate relationships, parenthood, pregnancy, gender role behavior, patient experience, health care provider role
- MeSH terms
- Adrenal Hyperplasia, Congenital, Adult, Female, Gender Identity, Humans, Male, Middle Aged, Pregnancy, Quality of Life, Sexual Behavior, Sexual Partners, Sweden, Parenting, Sexuality, Qualitative Research
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