Outcome study on gender identity, sexual functioning and psychological well being in patients with a disorder of sexual differentiation

In patients with a disorder of sexual differentiation the prenatal proces of
sexual differentiation did not completely follow the developmental steps into
male or female. These individuals are neither completely male nor female.
Having a somatosexual development that has not followed the male or female
route, has large psychosocial implications. In society, in-between sex
categories are not acknowledged or easily accepted. About 50 years ago
guidelines for a treatment had been developed to overcome the social
stigmatization and psychological problems such as confusion about one's gender
identity. This treatment policy is characterized by A. assignment of gender B.
endocrine and / or surgical adaptation of the body to the assigned gender. This
policy had been based on the assumption of psychosexual neutrality at birth and
the dominance of social factors in the development of a person's gender
identity. In the last 15 years this policy became critized. Scientific research
had shown that prenatal gonadal hormones are important in the establishment of
a person's gender behavior, demonstrating that human beings are not
psychosexual neutral at birth. Small studies and patients have been reported of
patients who felt very unhappy in the gender they had been assigned to and
raised in, some of them changed their social gender. Patient advocacy groups
have put forward that the genital corrections performed in childhood seriously
harm the genitalia, causing multiple sexual problems.
These data are based on case reports and a few studies in small groups of
patients. These finding therefore, are unsystematic and may not be
representative for the whole group of patients. They indicate however, that the
present policy for treatment needs to be evaluated in a large group of patients

In this study the prevalence and kind of sexual and psychosexual problems will
be assessed. Psychological well being is studied as well

Patients of the divisions of pediatric endocrinology of the ErasmusMC, VUMC,
UMC St. Radboud, UMC Groningen and UMC Utrecht will be asked to take part in a
study on
- Evaluation of diagnosis (to assess a specific diagnosis in case this
assessment have not been carried out before)
- Evaluation of genital surgery and seksual capacity
- Evaluation of gender identity problems and other psychosexual problems
- Evaluation of psychological well being

not applicable