The following is the summary of “Growing up with clitoromegaly: experiences of North American women with congenital adrenal hyperplasia”published in the December 2022 issue of Pediatric urology by  Szymanski, et al.

To provide a description of clitoromegaly in women with congenital adrenal hyperplasia (CAH). Women of childbearing age (46XX, ≥16 years old) in the United States and Canada who reported having clitoromegaly (primary: “grew up with a larger than usual clitoris,” secondary: “clitoris expanded over weeks or months”) were invited to participate in a cross-sectional online survey (2019-2020). Questions were written to evaluate the overall impact of clitoromegaly across 10 activities and 10 domains of life by a multidisciplinary team and women living with CAH. The Bonferroni correction for multiple comparisons yielded a significance level of 0.05/10, or 0.005, when comparing the net effect (positive-negative) to the null hypothesis of no impact using Fisher’s exact test. In a study of 97 women with CAH, 53 (55%) reported discovering clitoromegaly at the median age of 11-13 years old, whereas 21% made the discovery as an adult. 

Self-reported differences in clitoral timing and shape between primary and secondary clitoromegaly were not significant (P≥0.06). Clitoromegaly did not have any favorable outcomes overall. 7 out of 10 activities were negatively impacted by clitoromegaly (p ≤0.003), whereas 3 had no impact. Less than half as many women as males participated in team sports, changed their clothes in public locker rooms, or wore skin tight attire. Women reported a net negative effect on dating, all forms of sexual activity, pain-free sexual activity, and having a partner see their genitalia (P=0.003), but no influence on joyful sexual activity (P=0.12). 9 out of 10 areas of life were negatively impacted by clitoromegaly (P< 0.001), with only occupational satisfaction being unaffected (P=0.25). Very few women (between 2 and 6%) saw any favorable effects. In contrast, 49%-59% of females reported low levels of confidence, anxiety, sense of one’s own gender, and body image, while 36% reported feeling “sad or depressed.” In addition, 21-23% felt less positive about themselves as friends and parents, and 42-47% felt their romantic and sexual goals suffered as a result. 

There was no difference in responses depending on whether or not the respondent was a member of a lobbying organization (P>0.02). Their research confirms the unfavorable psychological impact of clitoromegaly in women with CAH, which has been shown in both qualitative and case series studies. The symptoms of clitoromegaly may make it more difficult to manage an endocrine disorder. All women, regardless of their past experiences, were given the equal chance to take part. These data cannot be utilized to determine the effects of specific clitoral size or the efficacy of early clitoral therapies because researchers  were unable to assess objective clitoral size, baseline virilization, or the exact nature of any clitoral procedures performed in childhood. Women with CAH appear to have increased clitoromegaly at high rates. Clitoromegaly can have a wide range of effects on women’s social, romantic, and emotional lives, but it’s usually unpleasant.

Source: sciencedirect.com/science/article/abs/pii/S1477513122002169