ESPE Yearbook of Paediatric Endocrinology

J Pediatr Adolesc Gynecol 2020 Oct;33(5):477-483. doi: 10.1016/j.jpag.2020.04.008

– Body image and perceptions around feminizing genitoplasty were assessed in 59 children, adolescents and adults with CAH (raised and identifying as females) and their parents– Participants were more concerned with their overall appearance than with appearance of genitalia– A younger age and a one step procedure for feminizing genitoplasty was preferred by both the participants and their parents

This article provides original information on the perceptions of body image and the age of feminizing genitoplasty in patients with CAH and their parents in Malaysia. The discussion section is interesting as the authors interpret the findings in the context of the Malaysian culture, which is typically a conservative society where intimate questions such as sexuality and the appearance of genitalia are not openly discussed. This is reflected in the high number of participants and their parents who did not answer questions on these topics despite agreeing to participate in the study. Indeed, participants have few opportunities to discuss these issues in their day-to-day life, including with their friends, and have little access to information about the normal appearance of genitalia.

A limitation of the study is that the authors do not discuss the results on body image and genitalia appearance as a function of the age of the participants, which varies from prepubertal age (10–12 years) to adolescence and adulthood. Although the authors mentioned that only 1 patient was married and only 2 were sexually active, it should be emphasized that they included only 18 patients older than 18 years and that the median age of a bride in Malaysia is 27 years. I feel there are two take home messages. First, personal views on sexuality and appearance of genitalia are strongly influenced by the society our patients live in. Second, pediatric endocrinologists can play an important role in providing information to patients with CAH and their families, in particular in countries where they are unlikely to find it elsewhere. Proper information could lead to reassurance, informed decision making and improved satisfaction with body image.