Don’t You Know Who I Am?

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submitted 1 year ago* (last edited 1 year ago) by SomeoneElse to c/dontyouknowwhoiam

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[–] [email protected] 10 points 1 year ago (1 children)

So disclaimer here, I’m only savvy on the molecular bio and can’t speak as much to the actual healthcare side of things, but the actual diagnosis is a little more complex than what I’ve written here. Sometimes streak gonads (gonadal tissue which failed to become fully functional ovaries or testes) will still contain some testis or ovarian tissue which will produce hormones. Just depends on the severity of the gonadal dysgenesis.

But as you’ve written it here is seems NPR is implying the surgery itself causes bone density issues? Those issues arise due to an absence of sex hormones, which would still be a problem in complete gonadal dysgenesis. This is why treatment is usually paired with hormone therapy as well as surgery.

I can’t speak to the relative risks of either, though. As with any surgery and treatment, it’s a medical decision with a lot of factors.

[–] coys25 13 points 1 year ago (1 children)

This is also outside of my area of expertise, but I am guessing the NPR interview is this one from Fresh Air:

Weigel, who identifies as she/they, was born with androgen insensitivity syndrome — a condition in which a person has both X and Y chromosomes, but does not respond to male hormones. Though Weigel presented as female at birth, tests revealed that she lacked a uterus and ovaries, and that she had internal testes.

Citing the risk of testicular cancer, Weigel's doctors convinced her parents to have her testes surgically removed, but Weigel now says the cancer risk was overstated — and that the removal of her testes as an infant led to complications later in life.

"By removing my testes, they basically put my body into artificial hormone withdrawal and didn't give me new hormones until a certain age when they decided it was time to induce puberty on my body," she says. "Puberty that would have happened naturally on its own had they left my body intact."

The Wikipedia article again gives some context:

While it is often recommended that women with CAIS eventually undergo gonadectomy to mitigate cancer risk, there are differing opinions regarding the necessity and timing of gonadectomy. The risk of malignant germ cell tumors in women with CAIS increases with age and has been estimated to be 3.6% at 25 years and 33% at 50 years. However, only three cases of malignant germ cell tumors in prepubescent girls with CAIS have been reported in the last 100 years. The youngest of these girls was 14 years old. If gonadectomy is performed early, then puberty must be artificially induced using gradually increasing doses of estrogen. If gonadectomy is performed late, then puberty will occur on its own, due to the aromatization of testosterone into estrogen.

So the argument, I think, is that the risk of cancer is very low before puberty, and people with CAIS should be involved in the decisions - since it may be pretty safe to allow puberty to happen prior to gonadal removal, at the least, which would obviate the need for surgery as a very young child and hormone replacement as an adolescent (a non trivial burden for a young person).

[–] [email protected] 7 points 1 year ago

Ohhh, I see my confusion now. My original comment was about Swyer syndrome, not CAIS. CAIS and Swyer Syndrome are very similar in concept but have a lot of important differences, especially in gonadal development. Usually in CAIS the testes will develop which can produce sex hormones, while Swyer syndrome leads to streak gonads which are generally functionless. Seems like there’s quite a debate about the timing of gonadectomy in CAIS indeed.