The perception of adult females diagnosed with CAH on childhood feminising surgery.

In congenital adrenal hyperplasia (CAH), the 21-hydroxylase enzyme is missing
or present at low levels. As a consequence, the adrenal glands are unable to
produce cortisol and aldosterone. All cholesterol will be metabolized into
androgens. In fetuses with 46, XX karyotype, the excessive amounts of
circulating androgens will lead to masculinization of the developing external
genital. About 70 years ago medical treatment became available. Infants born
with CAH obtained good opportunities to survive and CAH became a congenital
condition for life [1-3].
In individuals with 46,XX CAH the development of the internal genital is
unaffected and patients are fertile as females. Infants with 46,XX CAH
therefore, are assigned and reared as females. For many years, feminizing
surgery of the masculinized external genital was conducted in order to
facilitate menstrual discharge and penile-vaginal intercourse and to give the
genital a female appearance. As surgeons got more experienced, feminizing
surgery was often conducted in infancy [1,2].
For more than 25 years, feminizing surgery in childhood is under debate. It is
argued that feminizing surgery in children too young to give their informed
consent is unethical and harmful; it is disrespectful to the person with CAH
(your genital is not good) and harms the child*s body and sexuality. Advocates
(united in Organisation Intersex International;
https://en.wikipedia.org/wiki/Organisation_Intersex_International) consider
feminizing surgery as genital mutilation and call for a prohibition of all
elective genital surgery until the adolescent - young adult is old enough to
decide herself [4,5].
In this scenario, girls with CAH have to live with a genital with an atypical
appearance. Particularly for girls with born with severe genital
masculinization (Prader stages 4-5) the atypical genital may lead to
difficulties in acceptance of the female gender (by the child herself, the
parents or the social network) and in exploring her sexuality as a female.
Proponents of early genital surgery argue that adjustment will facilitate
acceptance and will enable girls to take part in all types of social activities
without fear for undue curiosity, injurious remarks, harassment or isolation
[4,6-9].
In several countries elective genital surgery in children is not possible
anymore [4]. In The Netherlands and in Belgium advocates ask the Ministries of
Health to reform the law in order to prohibit feminizing and masculinizing
surgery in under-aged children.
Evaluation of elective genital surgeries in childhood in relationship to
gender, sexual functioning and psychosocial wellbeing in adulthood did not
reveal an obvious advantage for early or delayed surgical intervention [10-23].
This study aim to explore the perception of young adult females diagnosed with
CAH, who underwent genital surgery in childhood, on the discussion described
above. According to them, what are advantages and disadvantages of early
feminizing surgery? What would they decide for their own daughters? For this
purpose, we will organize two focus groups, one in Ghent and one in Rotterdam.

The perception of adult females diagnosed with CAH, who underwent genital
surgery in childhood, on early feminizing surgery.

Non-interventional prospective study (observational)

Single 3 hours participation in a focus group or individual interview. Minimal
mental health risk.