Growing up with clitoromegaly: experiences of North American women with CAH
Konrad M. Szymanski, MD MPH1, Paul Kokorowski, MD MPH2, Luis H. Braga, MD PhD3, Heather Frady, RN BSN1, Benjamin Whittam, MD MS1, Devon J. Hensel, MS PhD4, O on behalf of the Life with CAH Study Group, n/a1.
1Riley Hospital for Children at IU Health, Indianapolis, IN, USA, 2Children’s Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA, 3McMaster Children’s Hospital, McMaster University, Hamilton, ON, Canada, 4Division of Adolescent Medicine, Department of Pediatrics, Indiana University School of Medicine and Department of Sociology, Indiana University Purdue University Indianapolis, Indianapolis, IN, USA.
Introduction: To describe experiences of clitoromegaly in women with congenial adrenal hyperplasia (CAH).
Methods: CAH females (46XX, >=16 years old) from the United States and Canada were eligible for an 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 CAH women 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 CAH women enrolled, 53 (54.6%, median age: 36 years, advocacy group recruitment: 81.1%) reported recognizing clitoromegaly at median 11-13 years old, with 20.8% 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, 7/10 activities had net negative effects (p<=0.003) and 3 had neutral effects (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), with net neutral 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%). Half of women experienced poor self-esteem, anxiety, poor female identity and body image. A third felt “down or depressed.” A quarter 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: Our findings support qualitative and case series evidence that clitoromegaly has primarily negative psychological outcomes among CAH women. Clitoromegaly may add to the burden of living with a chronic endocrine disease for many, but not all, women. Women with positive and negative experiences had the same opportunity to participate. Since we could not assess objective clitoral size, baseline virilization and exact nature of any childhood clitoral procedures, these data cannot be used to estimate the impact of specific clitoral size or effectiveness of early clitoral treatments.
Conclusions: Clitoromegaly is common among women with CAH. While experiences of clitoromegaly vary between women, they have predominantly overall negative, rather than positive or neutral, effects on multiple activities and social, romantic, and emotional domains.
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