Sunday, September 1, 2013

Where Are All the Actually Medically Relevant Intersex Studies Out There?

There's a lot of information on intersex out there in scholarly medical journals, but so little of the information is actually relevant to intersex peoples' health. I am an academic, and I know a think or two about using Google Scholar or ISI Web of Knowledge, or other search engines & databases to find research articles on stuff. In the various searches I've done for intersex, there is surprisingly little medical-related research going on that isn't about new ways to surgically slice and dice our bodies up without our consent.

This is really unacceptable, because I have a lot of questions about how my body works, and what's going to happen to me as I age, and there aren't a lot of answers out there because no one is researching this stuff. My intersex variation is androgen insensitivity (AIS) - specifically, complete androgen insensitivity (CAIS), indicating my body has never, ever been able to use testosterone. (Individuals with PAIS can make some testosterone, but not as much as typical females do.) Testosterone isn't simply a sex hormone that helps boys' bodies virilize, or to develop along a male trajectory - it plays important roles in bone health. Testosterone and estrogen both influence the process of building up new bone (either for the first time in young kids, or to replace older bone cells in younger adults) and breaking down old bone (sometimes without replacing it in older & elderly people). This is one of the reasons that both typical males and typical females have both testosterone and estrogen, even though they're inaccurately pegged as "male" and "female" hormones, respectively.

While it has been noted that AIS people may have more bone problems like osteoporosis than typical females - and can start having these bone problems earlier - these observations seem to be more anecdotal than everything. There aren't studies out there indicating when, on average, AIS people start having bone problems, how severe bone problems may be with progressing age, and the secondary effects of these bone problems. Like, I'm kind of worried not knowing what's going to happen to me. I take an estrogen pill every day, but even if I do that, what does it mean for your bones to have not EVER interacted with a chemical that's ESSENTIAL to their long-term health?

I have no idea.

Something else I wonder about is the supposedly high risk of cancer in intersex gonads. I had a gonadectomy when I was just a few months old. During surgery for a routine hernia repair (evidently kids get hernias, like, all the time), they noted that my gonads were testicles, and not ovaries as they had expected. The prevailing wisdom, based on a medical study from 1976, is that intersex individuals are likely to develop gonadal cancer, so routine gonad removal for intersex kids is recommended to avoid cancer risk.

I think it's really unclear whether recommending gonad removal right off the bat is reasonable or medically necessary, however. There hasn't been a lot of follow-up study since this one study from the 1970's. Typically, it takes more than one round of experiments, or a single research paper to really understand what's going on with the thing you want to test and learn about. What about validation studies to verify whether this 1976 paper's results, and resulting surgical recommendations, are accurate?

I have no idea if the cancer risks reported in this paper are legitimate. I have no idea if I could have kept all of my body parts intact, could have not needed to take a pill every day for the rest of my life (and pay for them, whether or not I have health insurance) to replace the hormones that my gonads naturally made (for free).

I am tempted to think that little research has been done on intersex gonadal cancer, in part, because medics are not fully comfortable with the idea of us keeping our "mismatched" organs, perhaps especially if we can reproduce. There are unfortunately lots of people out there who don't think that intersex people should be allowed to live our lives with our natural (i.e., to them, unacceptable) bodies, that maybe don't want us to pass our intersex on to our kids. That is really fucked-up, and is discriminatory at best, and eugenics at worst.

Medical researchers could be working on this important health concern that's really relevant to AIS folks like me, but they're not. They're almost exclusively working on updating and formulating new surgical techniques to alter our (naturally healthy) genitals and gonads instead. They're not investigating how our bodies work on a basic biological level, so we'll know what to expect and how to stay healthy during our lifetimes. They're not figuring out how to better treat us, with new knowledge specific to our various intersex variations.

They're just figuring out how to change us cosmetically, without our consent, with less of a fuss.

That's really fucked up.

To medical researchers: please start caring about and investigating issues that actually pertain to our health. Please stop thinking that new surgical techniques constitute the clinical knowledge we need to have well-adjusted, healthy lives. Please start trying to help us keep the bodies we have healthy and intact, instead of trying to change them into something you think is more desirable and "normal" when it's not. Please prioritize our health and value our bodies as they naturally are. I'm sick of waiting for these things to happen. And I'm afraid that someday, lack of knowledge about my body might make me seriously physically sick, too.

My knowledge of intersex-related health issues is pretty restricted to my own form of intersex - (C)AIS. What health concerns do you have, whether your form of intersex is AIS or something else?


  1. At the moment I seem unable to get beyond my own (social and physical) to speak about my own issues.

    But I do feel its important to add that there needs to be a greater divide in the research gained by those diagnosed prenatally or in early childhood (and preferably with parents that weren't aggressively trying to push the equivalent of reparative therapy upon their children or looking for a problem)

    and those that were diagnosed in adulthood.

    I feel much of the research is slated by those that look back and presume every negative occurrence is the result of having an IS condition.

    to which most of the majority of research towards my conditions (a twofer here) is predominately focused on social bullshit and mental health to the exclusion of all else.

    my physical health concerns are primarily in the way of a tremor (more severe than most, full bodied, and gradually worsening)

    to which the only suggestion is the same suggestions they offer for everything else: TRT and to remove the testicles they view as benign tumors.

    of course the ones that aggressively suggested that are also the same ones that wanted to round out the points on my ears and the small dot of an extra nipple on my chest. One of these days I'm going to have to get it pierced.

    It's frustrating. I don't trust them when it comes to this... mainly because I'm the one that often has to educate them rather than the other way around. And I'm tired... I've avoided TRT, I've avoided surgery other than a bit on my scrotum not long after I was born,,. and the funny bit that it took a mohel to keep the docs from doing much else. But still what if they were right? And that'd magically, mystically, solve everything.

    I'm not advocating that in the slightest. But I've gone to specialist to specialist to specialist over the tremor bit and scan after scan they find nothing. I get nothing more than a laugh and the hated phrase "genetics are strange"

    that's on a good day.. or I get the people that think I'm nuts. I'm nuts for keeping my nuts. Or that everything is symptom of my condition, as per their misinformation ... which they probably googled being too cheap to pay for a medical journal.

    And am more than a bit on the sde of crazy, but it's like an experience I had that should have been the worst still didn't compare to the system that seemed apathetic at best and demonizing, victim blaming, body shaming at the worst.

  2. Noooooooo, I rationalized my gonadectomy long ago, but you have just brought my doubts back in full force.

  3. I know, Anonymous (#2). It is really difficult to process. Take care of yourself <33