Gender dysphoria in intersex people

It takes courage to be between genders. Many people won’t accept that is possible, the law won’t protect you, and intersex people are assigned a sex at birth rather than let the child decide later. An intersex person told me that intersex people could experience gender dysphoria because of the hormone treatment they received. She/they did not refer me to any blog posts or accounts of it, but said the experience is shared on closed facebook groups. I did a bit of googling.

In congenital adrenal hyperplasia, where the clitoris exhibits signs of penile development, but the child is 46,XX (46 chromosomes, two X sex chromosomes) there was a literature review in 2005. 250 of the children were raised female, and thirteen had serious problems with gender identity. Some of the most “severely masculinised” children were raised male, and four out of 33 had serious gender identity problems. The authors therefore recommended that the children be assigned female, even when they were most masculinised.

That is, the children were closeted from birth. You will be raised as a “girl”, or in some cases (I don’t know whether studies would be more likely on people with CAH raised male) raised as a “boy”, rather than as a “child”. There is a decision here. There may still be eugenic ideas in some people that CAH is in some way shameful. Parents should be open with a child, as far as that child may understand, and there is a decision to make about how far to be open with the wider public, in nurseries or schools. But definitely closeting, making a decision on which gender to raise a child and sticking to that, should not be the default position. Things may have changed since 2005.

Trans people would tend to think of hormone therapy as testosterone, oestrogen, and blockers. This protocol, also from 2005, says for CAH hormone replacement therapy is life-saving, because hormones necessary for survival, cortisol and aldosterone, are replaced. Androgens are secreted in excessive amounts due to an enzyme imbalance, so the therapy is to suppress them. That too involves a judgment, as to what is an “excessive amount” for an androgen. There are different normal amounts in boys and girls, men and women, and during adolescence.

That protocol admits that patient advocacy groups debate with the medical profession their decisions about hormones, and laments that some “harbour a sense of outrage about their life or treatment experiences”. Being visibly in between genders is not easy either, and I can imagine someone with CAH allowed to have a masculinising puberty might object to that later. The answer is public advocacy, so that greater variation is accepted.

We don’t know what effect hormones have on gender dysphoria. A consultant was shocked that my GP would take me off oestrogen, but the risk he named for that was osteoporosis, a physical disability not anything psychological. I know that hormone level changes can affect my mood and how emotional I get, but not what effect oestrogen and goserelin, the testosterone suppressant I used, had on my mood.

I was committed to transition. I knew I wanted to change my presentation from Stephen to Clare. Starting hormones, and suppressants, was a step on the path to it, and an affirmation from the medical profession that it was right for me. So the hormones could have affected my mood as a symbol that I was doing the right thing, and advancing towards my goal, rather than by some physical action. I heard it as, “Yes you are really female and because you are female we give you oestrogen”. I can’t see how a study might distinguish psychological or placebo effects from physical effects- and possibly the effects are so intertwined that these words, suggesting that they could be distinguished, mislead and reduce understanding.

In adolescence, it would be different. Testosterone has masculinising effects, on body hair and voice, at whatever age you take it (or if, in CAH people, it is not suppressed). But I was initially told that I could get hormones after I went full time, so I went to a private psychiatrist who would give me hormones before. That gatekeeping role increases the desire for hormones: they become affirmation.

What is preferable? CAH people who did not have their testosterone suppressed might be masculinised, and as many are raised as girls and appear happy enough with that, the masculinisation is not cost-free.

I want a society where gender and sex differences are seen as completely normal, rather than this one where we so rigorously differentiate between two sexes that those physically in between may be treated to make them more clearly one or the other, trans people are protected in law if we intend to transition from a clear classification as one to a clear classification as the other, and those who are non-binary, physically or psychologically, are seen as weird. Now, though, it is safer and pleasanter not to be seen as weird. This pressure to conform, so serious that people alter their bodies or have their bodies altered for them, harms us all, but for children with CAH, either medicalised conformity or allowing the child to masculinise could hurt a child, and be resented.

In complete androgen insensitivity syndrome, 46,XY children appear to be girls until they fail to have a normal female puberty. Of 156 brought up as female in another literature review, none changed sex in adulthood. Of 89 children with micropenis, 79 brought up as boys and ten as girls, none changed sex, and that might indicate how powerful an upbringing can be in creating a gender identity. Of 99 brought up as boys with partial androgen insensitivity syndrome, nine changed gender. I knew one, who identified as M-F trans, and later identified as non-binary.

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