Academic Journal
Growing up with clitoromegaly: Experiences of North American women with congenital adrenal hyperplasia
| العنوان: | Growing up with clitoromegaly: Experiences of North American women with congenital adrenal hyperplasia |
|---|---|
| المؤلفون: | Szymanski, Konrad M., Kokorowski, Paul, Braga, Luis H., Frady, Heather, Whittam, Benjamin, Hensel, Devon J., Life with Congenital Adrenal Hyperplasia Study Group |
| المساهمون: | Urology, School of Medicine |
| المصدر: | Author |
| بيانات النشر: | Elsevier |
| سنة النشر: | 2022 |
| المجموعة: | Indiana University - Purdue University Indianapolis: IUPUI Scholar Works |
| مصطلحات موضوعية: | Adrenal hyperplasia, Congenital, Differences of sex development, Patient reported outcome measures |
| الوصف: | Introduction To describe experiences of clitoromegaly in women with congenital adrenal hyperplasia (CAH). Methods CAH females (46XX, ≥16 years old) from the United States and Canada were eligible for a cross-sectional online survey (2019–2020) if reporting clitoromegaly (life-long: “growing up with a larger than average clitoris,” secondary: “clitoris grew over weeks or months”). A multidisciplinary team and women with CAH drafted questions assessing net effects of clitoromegaly on 10 activities and 10 life domains. Fisher's exact test was used to compare net effect (positive-negative) vs. no effect (Bonferroni p = 0.05/10 = 0.005). Results Of 97 women with CAH enrolled, 53 women (55%, median age: 36 years, advocacy group recruitment: 81%) reported recognizing clitoromegaly at median 11–13 years old, with 21% identifying it in adulthood. There was no difference in self-reported timing or clitoral shape between life-long or secondary clitoromegaly (p ≥ 0.06). There were no net positive effects of clitoromegaly. Rather, clitoromegaly had net negative effects on 7/10 activities (p ≤ 0.003) and no net effect (neutral) on 3 (Table). Women were less likely to wear tight clothing, change clothes in public locker rooms and play group sports. Women reported net negative effects for most romantic activities (dating, any sexual activity, pain-free sexual activity, having a partner see their genitalia, p=<0.003), but did not report a net effect on pleasurable sexual activity (p = 0.12). Clitoromegaly had net negative effects in 9/10 life domains (p < 0.001) and neutral on job self-perception (p = 0.25). Few women reported any positive impact (2–6%). However, 49–59% of women experienced poor self-esteem, anxiety, gender self-perception and body image, while 36% felt “down or depressed.” Also, 21–23% experienced negative self-perception as friends and parents, 42–47% reported negative effects on plans for romantic and sexual relationships. Responses did not differ with advocacy group membership (p ≥ 0.02). Discussion ... |
| نوع الوثيقة: | article in journal/newspaper |
| وصف الملف: | application/pdf |
| اللغة: | English |
| Relation: | Journal of Pediatric Urology; Szymanski, K. M., Kokorowski, P., Braga, L. H., Frady, H., Whittam, B., Hensel, D. J., & Life with Congenital Adrenal Hyperplasia Study Group. (2022). Growing up with clitoromegaly: Experiences of North American women with congenital adrenal hyperplasia. Journal of Pediatric Urology, 18(6), 775–783. https://doi.org/10.1016/j.jpurol.2022.05.016; https://hdl.handle.net/1805/37335 |
| الاتاحة: | https://hdl.handle.net/1805/37335 |
| Rights: | IUPUI Open Access Policy |
| رقم الانضمام: | edsbas.89664D76 |
| قاعدة البيانات: | BASE |
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Methods CAH females (46XX, ≥16 years old) from the United States and Canada were eligible for a cross-sectional online survey (2019–2020) if reporting clitoromegaly (life-long: “growing up with a larger than average clitoris,” secondary: “clitoris grew over weeks or months”). A multidisciplinary team and women with CAH drafted questions assessing net effects of clitoromegaly on 10 activities and 10 life domains. Fisher's exact test was used to compare net effect (positive-negative) vs. no effect (Bonferroni p = 0.05/10 = 0.005). Results Of 97 women with CAH enrolled, 53 women (55%, median age: 36 years, advocacy group recruitment: 81%) reported recognizing clitoromegaly at median 11–13 years old, with 21% identifying it in adulthood. There was no difference in self-reported timing or clitoral shape between life-long or secondary clitoromegaly (p ≥ 0.06). There were no net positive effects of clitoromegaly. 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