The medical care of people with differences of sexual development (DSD) has changed significantly over recent decades. A difference of sexual development, also called disorder of sexual development or intersex condition, is a medical condition where there is some difference in the sexual development of the baby. The gonads and genitals of a baby may develop in a way that is different from the stereotypically male and female gonads and genitals (“ambiguous genitalia”, for example). Or the baby may have chromosomes other than XX or XY. Or they may be physically female but be XY. There are a large number of conditions that are folded under the title of “Differences of sexual development.”
So how did children used to be treated with DSD? The policy was one of secrecy and surgery. In order not to “confuse” the child about whether they were a boy or a girl, corrective surgery was used at a very early age. Children were often not told that they had a DSD. They took medications without knowing why they took them, or had surgeries without knowing why.
This was standard treatment until intersex people themselves started to speak up. They spoke of being taught to feel shame about their genitals. They spoke of pain and discomfort with sexual activities because of the genital surgeries. They spoke of being assigned the wrong sex. They spoke of the psychological distress of never having been told they had a difference of sex development.
And slowly medicine listened. Today, surgery is not recommended unless the life of an infant is at risk. Open communication is encouraged, and organizations such as the Accord Alliance exist now to support people with differences of sex development.
All of this history brings us to today’s study. D’Alberton et al investigated the quality of life and psychological health of women with DSD in Italy. They compared women with DSD to women without DSD, and they also compared older women with DSD to younger women with DSD to look for effects of the change in the way they were medically treated.
Who did they survey? 43 adult women with DSD, all of whom were genetically XY. Most (79%) had complete androgen insensitivity syndrome. By “women”, the authors mean people who were identified as female at birth and who have female gender identities. They were compared to 43 women without medical conditions, recruited from medical and nursing fields.
What did they measure? They used standardized surveys to measure psychosocial adjustment, quality of life, and depression/anxiety symptoms. They also asked demographic questions and medical questions.
What did they find?
Women with DSD had higher levels of employment and education than women without DSD. Women with DSD were also less likely to have a partner or children and more likely to be living with a parent than women without DSD. Overall quality of life was good for women with DSD. However women with DSD had higher levels of psychological distress (depression, anxiety) than women without DSD.
Younger women with DSD had lower levels of psychological distress than older women with DSD. The younger women were also told their diagnosis at an earlier age than the older women (11.6 vs 15). This suggests that the change in management has indeed made a difference.
Many women with DSD had a surgery. 74% of women with DSD had a gonadectomy (removal of the gonads). Some had additional surgeries, such as vaginal reconstruction. All the women who had gonadectomy were on hormone replacement therapy. There appears to be little standardization of hormone replacement for women with DSD. All the women with DSD in this study reported that they were comfortable with their female gender identity.
What were the limitations of the study? Mostly small sample size. And the sample was a bit of a convenience sample — they were drawn from support groups. The comparison sample was not representative of the average population either, being mostly nurses and medical students. However the authors did make an effort to compare to data from the average population where possible.
What does all this mean?
Overall, women with differences of sex development are doing fairly well. There wasn’t a lot of suicidality or low education or extremely high levels of distress in this group. But it does seem like there’s still work to be done. The finding that women with differences of sex development had higher levels of psychological distress is concerning. The authors recommend that all people with DSD, and their families, be offered psychological support and counseling. It’s a good place to start.
Interested in reading the study for yourself? The abstract is publicly available!