ESPE Yearbook of Paediatric Endocrinology

Front Pediatr 2019, 7:144. DOI: 10.3389/fped.2019.00144

• The outcomes of feminizing genitoplasty of 46,XX individuals with CAH were reviewed in this cross-sectional study.

• The study highlights the importance of cultural sensitivities, access to medical treatment and timing of the diagnosis on attitudes toward feminizing genitoplasty in Malaysia.

The authors should be commended for offering an open-minded analysis of genitoplasty outcomes in a large number (n=59) of female patients with congenital adrenal hyperplasia (CAH) in Malaysia and for discussing their findings in the context of the Malaysian society and culture. We found the comparison of the differences in “shyness/embarrassment” (in the context of decision-making and perception around DSD) between Malay and Western societies highly interesting. In the Malay society, such shyness is called “Malu” and is considered as a demonstration of respect towards the elders and the elite. It does not have the negative connotation as found in Western societies.

In 3/4 of the cases, genitoplasty was performed by a surgeon trained in DSD repair. Overall, and this is similar to other reports, there was a wide range of outcomes in terms of satisfaction with the cosmetic results (42% were considered as poor) and preferred age for the genitoplasty (half of the parents prefer to have it performed early in life). Interestingly, the authors reported that little attention was given to clitoris preservation until 2006, but, on the positive side, that this has now become an integral part of surgery. Among the 18 participants who were older than 18 years, the authors reported that only one participant was married and only two were sexually active. This very low number is consistent with other reports of poor social outcomes among female CAH patients. However, this has to be interpreted in the context of a progressively older age of marriage among Malaysian women (25.7 years in 2010) (1). Finally, the patient population investigated in this study is quite young and it is very important to obtain long-term follow up data on fertility, sexual satisfaction and overall quality of life.