intersex

Yet another study has examined gender outcomes in women with CAH. This time the focus is sexual orientation. This makes me think again of a paper psychologist Tom Mazur presented at the 2008 meeting of the Lawson Wilkins Pediatric Endocrine Society. Tom and his colleagues did a literature review of all of the studies they could find on outcomes across DSD diagnoses. They found that less than 1% of all outcome studies assess quality of life; the rest largely deal with gender change later in life, degrees of gender-atypical behavior, sexual orientation etc.

This is unfortunate and also not surprising. Scientific interest in intersexuality stemmed from an interest in human psychosexual development in general, which is tied to long-standing debates over the relative roles of nature and nurture in determining physical and behavioral differences between men and women.

Researchers have looked for ways to assess the relative role of biology and socialization in making us men and women. Girls with CAH have been of particular interest because they provide an “experiment in nature” due to their atypical exposure to androgens in utero, which not only masculinize the genitals, but, researchers hypothesize, the brain, leading to more male-typical behavioral traits, including what is understood as male-typical sexual desire (i.e., desire for women, or homosexuality). These theories are united by the claim that sex hormones play an important role in the production of sex differences, though researchers and theorists differ in their opinions about which behaviors are affected.

The unfortunate consequence of this overwhelming focus on gender outcomes is that after fifty years we know surprisingly little about the factors that affect quality of life for children and adults with DSD—a fact that too few researchers are seeking to rectify.

Going against conventional wisdom that vaginoplasty in infants is technically easier, a new case study suggests that surgery at puberty may not be all that more difficult due to anatomical changes in the pelvis as the child grows.  The surgeons report the the case of a girl with CAH on whom they chose not to do vaginoplasty in the neonatal period because of what they described as her “short vagina and long urogenital sinus,” which would have made an already difficult surgery even more complex. When she began puberty at age 9 they did a magnetic resonance scan of her pelvis and found that her vaginal size had increased and her vagina and urogenital sinus had descended toward the perineum—changes that would make surgery less difficult than if it had been performed earlier in her life. This is despite the greater difficulty “mobilizing” tissue in an older child. They conclude:

We therefore presently recommend that, since the vagina is not an organ that is essential in early life, for most children with CAH there is no urgency for vaginal reconstruction. Indeed the natural vaginal growth and development that occurs at puberty may have significant advantages in reducing the extent of surgery, which can then be done with fully vascularized, innervated, and lubricated local vaginal tissue.

I don’t think it will be surprising to anyone working in the field of intersex, or DSD, that few families or individuals receive psychosocial support. Most of the clinicians I’ve spoken to say it’s because it is hard to find qualified people to provide the care and harder still to get reimbursement for this care. There’s a new study showing that few families get psychosocial support, which is not a big surprise, but what’s surprising is the gap between how many programs said they offer support and the number of families receiving support. The abstract is below.

ABSTRACT: The birth of a child with an intersex condition is often an emotionally stressful event for parents. Preparation and ongoing support systems could be beneficial to both parents and children and would alleviate some of the shame and isolation associated with intersex conditions. To assess the extent to whichpsychological support is available, a short e-mail survey on this topic was sent to the directors of 50 pediatric endocrinology fellowship training programs (PEFTPs), who are most likely to evaluate and treat intersex children and their parents. Of the 29 PEFTPs that responded, 69% offer psychological support and 58% have a mental health specialist on staff. However, only 19% of patients or families receive emotional support during diagnosis and only 15% receive support after diagnosis. We found two barriers that prevent patients and families from receiving psychological help from their intersex care team. First, there is a lack of training for mental health professionals regarding the needs of intersex patients and families. Second, some families refuse help even though it is offered. This study reveals that further research is needed to overcome these two barriers regarding mental health treatment of intersex patients and families.