this post was submitted on 26 Feb 2024
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[Serious] Intersex people of Lemmy, do you feel like you get/got adequate healthcare for your sex disorder? (lemmygrad.ml)
submitted 10 months ago by Comradesexual@lemmygrad.ml to c/askchapo@hexbear.net
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For me absolutely not. I am only diagnosed as "sex disorder", got bad blood results, and I get pushed around, because no one feels qualified to deal with me. I feel like people treat me like a zoo attraction. I had psychiatrists ask me to show them my body and touch me, because they were curious. Doctors get angry with me for not yet being diagnosed, question why I'm not yet diagnosed, don't diagnose me themselves, and then end up telling me they're not qualified enough. And then the next doctor it happens again. They don't even do new tests, they do the exact same tests, then get the same results, then act angry and tell me to find a more specialized doctor. I was told by multiple ones I need a brain scan to see if there's something off there, but then no one forwards me to one. My blood results suggest I will or actively am losing bone density.

I don't want anyone's advice or input on my case tbh. I'm tired of people playing Dr House with me.

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[–] EmmaGoldman@hexbear.net 22 points 10 months ago* (last edited 10 months ago) (1 children)

I don't think there are a ton of other intersex people on Lemmy.

But yeah, I don't think I've had things handled adequately at all. I also have been ping-ponged around between doctors who "don't know how to treat me." They are at least professional enough not to ask to see or touch my body, but are generally obsessive about doing weird transmed shit and unnecessarily demanding every possible blood test or genetic test that exists every time I need a refill of even entirely irrelevant medications. No, you do not need to do a full gene sequence to refill the anxiety meds I've been on for 15 years.

My strategy has been to just get a bunch of different doctors, each of whom only treat the exact thing that they're specialised in, rather than one doctor that tries to do everything.

I also had bone density issues due to low sex hormone levels. I was able to get that handled by getting a referral to an endocrinologist who regularly works with trans people. They still want blood work, but at least they're competent.

[–] novibe@lemmy.ml 4 points 10 months ago (1 children)

An endocrinologist wanting blood work sounds like the most normal thing ever tho hahaahah

[–] EmmaGoldman@hexbear.net 5 points 10 months ago (1 children)

Yeah, the Endo wanting blood work is basically the only doctor for whom it actually makes sense in my life.

[–] novibe@lemmy.ml 2 points 10 months ago (1 children)

Honestly, not that it makes it ok, but thinking from a doctor’s perspective… They’re just people right? They had to study what they had to study (aka the most common things), and they are just workers. People see them as godly know-it-alls and expect them to simply be perfectly capable all the time.

So when encountering something they don’t know how to deal with, it makes sense they just ask for random tests and act like they know what’s happening. It’s what everyone expects of them!

It sucks, but it’s systemic right? It’s not really about them being arrogant or anything. Not that doctors are not arrogant a lot of the time… But yeah… idk what I’m talking about.

Just also, med school is fucking insane. Only the most broken-brained and psychopathic people can get through most of the time. We literally filter out all the normal people during it. No wonder most doctors are crazy.

[–] EmmaGoldman@hexbear.net 7 points 10 months ago* (last edited 10 months ago) (1 children)

When you hear hoofbeats, think horses not zebras.

Far too many doctors working with intersex and trans patients will assume that all medical conditions are related to the patient's trans or gender diverse status. This phenomenon is known as Gender-related Medical Misattribution and Invasive Questioning or "trans broken arm syndrome"

It becomes largely impossible to convince doctors otherwise once they make this false connection, and it also ties in deeply with being dismissed as a patient. It's why so many become serially turfed as they're handed off to other doctors and practices who all "don't know how to treat you."

And how could they be expected to treat you? My god, a novel condition never before seen by science that causes arms to spontaneously break because the person they're a part of is trans? Or Crohn's that's purely caused by using they/them pronouns? None of these are actually related, but doctors will regularly convince themselves they are, demand to run tons of unnecessary tests or pursue absurd diagnostic treatment paths and then flog off the patient when (not if) the testing or treatment doesn't give them the impossible magical mystery explanation they're looking for.

The solution is for doctors to be better educated and to stick to the KISS principle rather than looking for an interesting case study or an excuse to prescribe conversion therapy.

[–] novibe@lemmy.ml 3 points 10 months ago* (last edited 10 months ago)

Thanks for that. As a cis person this was very helpful. Indeed that is not my experience and perhaps I was giving doctors too much credit. And still seeing them too much as “doctors” and not just people as I said earlier. And people are transphobic/have prejudices towards intersex people. It makes sense that the issue is not regular doctor issues, but issues related to transphobia…

[–] AutomatedPossum@hexbear.net 16 points 10 months ago

My blood results suggest I will or actively am losing bone density.

You may already know this, but this is a typical side result of having low levels of sexual hormones for extended amounts of time. Have previous blood tests looked into that?

If i recall correctly that you're in Germany and you want to find doctors that are more inclusive of gender diverse people, you should give https://queermed-deutschland.de/nach-empfehlungen-suchen/ a try, i found them really useful when i planned my transition. Also, if you're in Germany and if going on hormones would mean that you want to go on hormones that do not align with your AGAB, i feel i must warn you that getting diagnosed as inter will make it extremely difficult to access gender affirming care that does not match your AGAB.

[–] wtypstanaccount04@hexbear.net 12 points 10 months ago (1 children)

Honest question: Is intersex even a disorder (with severe health impacts), or is it just viewed as a disorder by society because they are bigoted?

Either way, intersex people are cool flag-intersex-pride hexbear-intersex

[–] Comradesexual@lemmygrad.ml 7 points 10 months ago

Depends on the condition. Intersex is a catch all terms for sex disorders.

[–] ProfessorOwl_PhD@hexbear.net 6 points 10 months ago (1 children)

Can't speak in general, but my intersex friend only found out he was intersex and had been "surgically corrected" to female anatomy at birth when he was about 25, after his dad got the family genetic testing as part of an ancestry.com type thing. Took them ages to dig up the relevent medical records, even his own parents hadn't been told.

[–] Comradesexual@lemmygrad.ml 7 points 10 months ago

The country I was born to only has to store records for up to 20 years, so there's no records of what happened to me, but based on the issues I've had, it's likely there was a surgical intervention. Glad your friend had the ability to access his data.

[–] ExotiqueMatter@lemmygrad.ml 5 points 10 months ago (1 children)

The ho so praised European healthcare is a joke, hope you will find someone competent.

[–] Comradesexual@lemmygrad.ml 4 points 10 months ago

Thank you, Exo. I wish that'd happen too.

[–] SSJ2Marx@hexbear.net 5 points 10 months ago* (last edited 10 months ago) (1 children)

That sucks. It's not quite in the same ballpark but I've been telling docs that I have breathing issues for years and haven't gotten any results - I'm like 90% sure COVID made it worse, but even before then since I was about 25 any time I exert myself past a certain point I wheeze like I have pneumonia - but it doesn't really show up when I'm not exercising so I've never been able to get a diagnosis.