How Do Patients with Disorders of Sexual Development Feel About Their Gender?

Some patients with disorders of sex development (DSDs) experience gender dysphoria and desire to transition, according to new research in the Journal of Sexual Medicine.

Usually caused by genetic or hormonal issues, DSDs occur when a fetus develops differently from a typical male or female. For example, girls with vaginal agenesis are born without a fully developed vagina. Or, a child might be born with one testis and one ovary.

In the past, decisions about sex and gender in children with DSDs were usually made by parents shortly after the child’s birth. Nowadays, such decisions are more likely to be put on hold until children can give consent and express their gender identity.

The current study involved 1,040 participants with different types of DSDs, including Klinefelter’s syndrome (in which a male is born with an extra X chromosome), Turner syndrome (in which a female is born without an X chromosome or with an incomplete X chromosome), and congenital adrenal hyperplasia (in which the adrenal glands to not work properly).

The participants were treated in 14 centers located in Germany, France, the Netherlands, Poland, Sweden, and the United Kingdom. Seven hundred seventeen identified as female, 311 identified as male, and 12 identified as another gender.

Six diagnostic groups were formed based on types of DSD, gender at the time of the study, and androgen effects. However, eighteen participants did not fall into any of the categories and were assessed separately.

Each participant had a medical interview and completed questionnaires and scales used to assess gender dysphoria, self-esteem, anxiety, and depression. Case reports were also reviewed for information on sex assignment and reassignment, direction of reassignment, and age at gonadectomy (surgical removal of ovaries or testes).

The participants’ average age was 32 years.

Overall, 5% of the participants underwent a gender change. For about 1%, this change occurred after puberty. If individuals with Klinefelter and Turner syndromes (“conditions in which gender issues are not prominent”) were excluded, the percentage of after-puberty changes rose to 3%.

Only one child who underwent a change transitioned back to the original gender.
On the gender dysphoria assessment, the study sample’s overall scores were not much different from scores of comparison groups without DSDs or gender dysphoria. However, the researchers noted that this questionnaire had a high non-response rate. The phrasing of questions might have led some respondents to believe that the items were not applicable to them. Or, some individuals may have been confused about their gender and, in turn, how to respond to the questions.

Four percent of the participants said their gender varied. Such variance was reported in several ways, e.g., as “between” male and female, as a gender other than male or female, or as alternating between male and female. Participants in this category were more likely to suffer from low self-esteem, anxiety, and depression, the authors said.

Healthcare providers should understand that patients are not always clear about their gender and feelings about it, the authors said, explaining that “even if a female-raised person presents herself as female, she might question her gender, have doubts, or even not experience herself as a woman (or a man) at all.” Some might feel awkward discussing their situation with a doctor, they added.

“Recognizing that gender is a non-binary phenomenon could facilitate satisfaction with one’s gender for people from the entire gender spectrum,” the authors wrote.

Resources

The Journal of Sexual Medicine

Kreukels, Baudewijntje P.C., PhD, et al.
“Gender Dysphoria and Gender Change in Disorders of Sex Development/Intersex Conditions: Results From the dsd-LIFE Study”
(Full-text. Published online: March 29, 2018)
https://www.jsm.jsexmed.org/article/S1743-6095(18)30143-7/fulltext

SexHealthMatters.org

“Disorders of Sex Development”
(November 13, 2013)
http://www.sexhealthmatters.org/sex-health-blog/disorders-of-sex-development