im making a list to bring to a potential doctor to advocate for a hysto feel free to add/help
history of fibroids in my family
birth control doesnt work with me because i am sensitive to medication and have had bad side effects
my mood swings are so bad that people i love actively avoid me for 2 weeks
i often cannot get out of bed or my room
it renders me unable to take care of myself in the same ways i can when im not on my period & im worried that will affect my ability to retain employment
im making a list to bring to a potential doctor to advocate for a hysto feel free to add/help
the other stuff that depending on the doctor i might bring up/i wont bring up i need a "Proper" way of saying this:
it makes me dysphoric as hell
not having kids
i know my body better than you do
that history of pain in my family has been ignored for decades bc they are black women & thats on you & your people so tell me how youre going to fix it now bc youve hurt them irreparably for generations
im figuring im probably gonna have to crowdfund for it/really wanted to start doing that like eight years ago but didnt think i was worth it/my family wouldnt go for it but like fuck it im tired of wanting to die for two weeks straight every month in addition to wanting to dip out of life due to regular shit along with being black + queer + mentally ill in amerikka
i got shit to do id like to try to live for like at least three more years
uterus, doctors, violence via stabbing
im reading the stuff necessary to make it possible for my insurance to cover it and so far i should not mention: gender dysphoria, and theyll want me to go through a whole bunch of other things to make sure its even necessary so im def gonna have to do out of pocket because im figuring having someone stab me in the uterus will not convince them
what really got me going with this is last night i watched one of the boys through the tampa trans film festival and every time he got a surgery he was so happy and it helped because ive always been worried if i want top surgery (i dont think i do, me and my boobs are buddies--the way people treat me because of them is not what i want) or if im supposed to want a penis and it seems i dont with either and it clarified a lot of shit for me/made me feel a lot more at peace
@wenotfreeyet i know i'm a random person blowing through but good luck!!! i am rooting for you!!!!
framing it as gender care might get a doctor to kind of come at it from both angles. like it's hurting you in two separate spheres. but if it's going to be absolute ass to get them to recognize that shit, deffo pass it up. it might be worth bringing up to a doctor if you trust them to be cool with trans folks even if you don't think you can persuade your insurance - the doc can leave that off the official reasons but simply know that as a contributing factor.
i may be cishet but i also get put into brain hell when i take hormonal birth control, i wish i had other ways to help with that but mostly i'm just like. damn what a mood. been there done that it sucks so fucking hard, especially when hbc gets tossed around like a panacea.
it's reddit so it's also full of just rank bigotry, don't actually read any of the posts just look at their wiki lmao, but i think r/childfree has a list of doctor recommendations. cross-indexing that with trans-friendly lists might be really worthwhile. the list there is kinda crowdsourced of "doctors that will fucking believe you when you want uterus to GTFO". again, reddit, take with a grain of salt, don't pay attention to the regular posts over there bc reddit is a hellhole, but it's a potential resource to have on your radar.
i wish i had more concrete advice, some of it is just... having to do the "good patient dance". i have it significantly easier being cishet and white, but it's still a bullshit two-step my disabled butt is very familiar with. i think being direct in this case is going to help you a lot more instead of trying to strategize and lay out a trail of breadcrumbs to let the doctor feel smart by coming to the conclusion, also because that's a whole lot of mental work and effort lmao. it may require some being willing to try some shit just to report back "lmao it's not working". should we have to do this shit? no. do we kinda have to? because the medical system is biased and bullshit? yeah... yeah. i know that i got a lot of headway made with my gyno by being willing to try some shit that doesn't work just so i could go "see, it has not worked, just as i said". my advice there is to be open to doing a little bit of that, but only in ways that are easy to reverse. no IUD implant for instance, but i was willing to try hbc again, knowing i'd have a shit time of it, mostly so i could report back with a "good news! it absolutely has not worked just like i said".
it's way more of a dance move i'm familiar with from being a chronic pain patient, but doctors seem to respond better when you talk about things in terms of functionality. it's a way to ground that "this is ruining my life" in some statements where the doctor can see and verify it's happening. this is, again, absolute bullshit that we even have to do this part of the good patient dance, as is the rest of the whole good patient dance thing. but a lot of doctors get cynical and disregard stuff like pain numbers because it's subjective reporting. my advice would be to really really play up how this affects your functionality. drive home the problems with relationships, your own mental health being effected, and especially things like if this is a becoming a barrier to employment. "help me fix this so i can get my life back, so i can maintain my relationships and continue working at my job and not have to go on disability benefits" is a big problem to present to the doctor. and it's a big enough problem that will get them open to big solutions (bc yeah, some of the hesitancy around hysterectomies i get - it's surgery, there's an inherent risk that comes with every surgery, yada yada). if the problem is big enough and you make sure to drive it home that it's a big-ass problem, they'll be much more willing to discuss that big-ass solution.
especially frame it in terms of what you can do. can't get out of bed, have trouble maintaining friendships, that sort of thing. doctors like it when you offer those signs of not doing well that can be externally verified, lol. like someone else in your household can say "oh, yeah, i can tell they're having a really rough time with it! i can tell because they're not able to ____ right now".
the peak of bullshit is that sometimes it just... helps... to have a cis dude there to confirm. this is indeed just. absolute. peak of bullshit. i wish i lived in a world where i didn't have to give you this advice, and a world in which i didn't have to employ this shit myself from time to time! but it's a fucking thing. the ruleset to the game fucking sucks and i'm angry that we're stuck dealing with it. but when you're playing monopoly with the grim reaper for the cost of your life, you shouldn't feel the least bit of shame in pouring over the official rule sheet and using every possible strategy to make sure you win, yknow?
even just another person in the room helping you take notes and advocate for yourself can help a lot. they can also serve as eyewitness to the struggling-to-function.
a lot of that is directly trying to square up against the "lol, hysterical person exaggerating this silly uterus pain", and i wish it wasn't necessary but, unfortunately, here we all are. so i'm angry that you'll have to go up against it, but i'm also not above pointing out gaps in the armor for you to try and stab lmao. it's a bullshit gladiatorial arena, the world should not operate this way, medical care shouldn't do this, but it's life and death so who gives a shit about not exploiting strategies. figuring out how to stay alive in the face of bullshit is revolutionary and radical in and of itself.
at least that's what i am doggedly telling myself lmao
speaking of that whole vibe, there is an avenue of just... sssslightlymakeshitup. not about you personally or your symptoms - be as honest as you can with those. (though i will pass along the advice from my disability lawyer here. talk about your functionality on your worst day. don't downplay it by trying to figure out sort of an average. talk about the worst days, and drive home how that affects your functioning, and also bring up how you simply cannot plan your life around that.) however the family history section is something where doctors are used to hearing rumors, incomplete information, and so on. maybe don't fudge so much for immediate family, but if you look up cancers where hysterectomies are often the fix, well... maybe you invent an aunt or great-aunt blood relation who had that, and some rumors from family genealogy lmao. don't overplay this hand and have it be an "every single afab person has died of womb cancer since 1852" level thing, but you know, it's a way to get one more concern on the list. probably only attempted if you're relatively estranged from your family so that chances to get called out are kept to a minimum. ofc this won't be something doctors will leap immediately to hysterectomy over, buuuuut it could be another reason on the long list ready to help tip the scales. more likely that those concerns will be immediately addressed with things like testing for genetic markers, hpv vaccine, more pap smears - but it's also a way to get the insurance to pay for all those things. and hey, if they DO find something spooky in there, it only strengthens your case. and it does so in a way that means the insurance will be more likely to pay for it, at least in part. (a keyhole surgery hysterectomy is way cheaper to pay for than chemo, especially now that a lot of preexisting conditions fuckery is illegal. the sumbitches at the insurance might try it, lol, but much better odds on them backtracking.)
this is a big long wall of text of rambling, just kinda tossing spaghetti at the wall and seeing if any of it sticks, coming to you from a random stranger on the internet. so all of this may not be useful, like, at all!
but hey, i'm rooting for you and i sympathize with the bullshit that is similar to bullshit i've also gone through. it may not mean terribly much in the end, but it is heartfelt lol. good luck!!!
@wigglytuffitout thank you very much! tbh id rather have too much information than not enough & i appreciate this. i tend to be like. naively truthful & that obviously hasnt gotten me anywhere so seeing the parameters in which i can try to lean away from my naivete so i can get my point across is really really helpful. thank you for the well wishes and thank you for all of this cause i can see this like also helping me with the other medical bullshit i have to deal with, thank you!!
@wenotfreeyet i'm glad that something in here may help!!!
honestly one of these days i gotta go polish up https://elekk.xyz/@wigglytuffitout/103681376792093588 into a proper like blog post. simply being aware of 'the good patient dance' is really helpful sometimes, though i feel like it's most critical for chronic pain shit (when the stakes are so high of getting possibly written off as 'just a drug-seeker', ugh)
really wish that i knew of a konami code to just punch in to get doctors to listen, but hey, until then, i can sometimes say something useful through sheer volume of text
@wenotfreeyet hey I'm white/cis and had a medical reason that was acceptable by my insurance (giant fibroids), so I don't have relevant tips for this query.
but I just had a hysterectomy in the US (earlier this month!) and it was a good experience. I'd be happy to share info about that if it would be helpful.
fwiw your list of reasons looks pretty compelling to me! if the first doc won't give you a referral, keep trying
@twistylittlepassages if youre okay sharing, i would love to hear about your experience. im so glad it was a good experience. thank you so much!
@wenotfreeyet I've tagged you in the followers-only thread where I told the whole story. (if anyone else here is looking for hysterectomy info and doesn't follow me, lmk and I'm willing to make the info available to other people who need it!)
really great and supportive group. some of them still use really gendered terminology, but there are trans guys making their presence known as well! worth checking to see if anyone else has asked what you're asking
not much advice, medical
@wenotfreeyet it might be different and probably less effective for someone who's not white, but my understanding is that "quality of life" is a good phrase to use.
Probably in the form of like "i have almost no quality of life because of this" and/or "this really sucks, i can't do anything 2wks out of 4, hysto would *really* improve my quality of life."
Possibly time saying that to that near the bit you mention employment, to imply "employment = QoL".
Best of luck ♡♡
not much advice, medical
@wenotfreeyet oh, possibly for "im not having kids":
"bc of loss of functionality / shit mood for *two weeks /every/ month* means that there is no way i have the capacity to raise kids anyway, imagine how that would suck for kids if i had them"
(... "i dont have the capacity" has been a really useful script for me, but that's been more in casal social situations to explain why I'm studying part-time without giving detail.)
Hope that gives u some direction script-wise
@wenotfreeyet heya, im in the process myself. It varies significantly based on where u are... unforc im white but i can at least help w logistics of it?
Do you have a fam history of complications or cancers? Cuz honestly without this they will fight u every step of the way :T
@audacity if youd like to message them to me at any point (no pressure on time), id appreciate them!
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