#I need an official pcos diagnosis

[leviiackrman]

Got an emergency dentist appointment. Got more antibiotics.

I have got yet another fuckin infection.

[guqqie]

wait holy shit you have pcos too? i have seen exactly one person other than me have this variant, it's so cool to know someone i look up to also has it! to the pcos crew! (ps did you know pcos is an intersex variant? thats how i found out abt it to get my diagnosis! /ramble)

yeah i have PCOS!! i got officially diagnosed almost a year ago and have been on medication to help regulate it since! it can really suck sometimes though, and i plan to do a whole stream just talking about it in depth and how it’s effected me and my life! gotta let more people know about the PCOS crew :)

ALSO NO I DIDNT KNOW!! i need to do more research on that but it is cool that pcos falls under the intersex umbrella! :D

[orcelito]

Considering the. Ahem. Ways this year has gone, I've not been thinking about it all that much, but. I did start this year with the motto of Year Of Unfucking My Life. With a few goals involved in that.

I got an official adhd diagnosis, as well as a diagnosis for PCOS. Other diagnoses in progress. Gotten adhd meds and birth control to regulate periods. I've gone back to school and I'm keeping up with it better than ever before. I've even been working on practicing driving, something I've been largely neglecting since I first got my driving permit, um... 11 years ago...

I just need to actually Get my license. And I need to get it before the end of the year. If I can accomplish that, then I'll say the Year Of Unfucking My Life was successful.

[the-666-system]

Hey, we're the 666 system. I'm the host, Blaze (🔥). We're a traumagenic introject heavy HC-DID system with a headcount of possibly around 50. We are neurodivergent, chronically ill, and disabled, so please be patient with us. This blog is gonna be, like, 80% venting lol. We're very switchy and have severe amnesia, so don't be upset if we forget things easily.

This is how we look bodily, except we don't have our wheelchair yet! Our parents are ableist and claim we don't need one even though we have chronic pain.

We are collectively an intersex, trans, alterhuman, bisexual, emo, psychotic, machiavellian, narcissistic, psychopathic irl yandere.

We also are pro Health At Every Size and are a fat activist. We won't give specific numbers since we are recovering from an ed, but we are on the smaller end of superfat on the fatness spectrum.

Frequent Fronters

Blaze (He/They/It)

Tomie (She/They/Spiral)

Ayano (She/They/Love)

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Alastor (He/It)

Angel Dust (all pronouns)

Gloomy Bear (It/Its)

Yuri (She/Her)

Sayori (She/Her)

Toby (He/Tic/Blood)

Mental Disorders :: HC-DID, DPDR, C-PTSD, Schizoaffective Bipolar type, OLD, Cotard's Syndrome, Adele's syndrome, Clinical lycanthropy, Renfield's Syndrome, pyromania, kleptomania, insomnia, panic disorder, social anxiety disorder, OCD, substance use disorder, anorexia (in recovery)

Neurodivergencies :: Autism, selective muteism, ADHD, Tourette's syndrome, MaDD, NPD, BPD, ASPD, HPD, PPD, hypersexuality, ARFID, Pica, synesthesia

Physical Disorders :: Lupus, Fibromyalgia, CRPS, ME/CFS, POTS, hEDS, endometriosis, PCOS, PGAD, Narcolepsy, Cystic Fibrosis, epilepsy, hemolacria

We are officially diagnosed with everything physical except Tourette's (only a few alters have it), as well as our social anxiety. Everything else is heavily researched self diagnosis.

Hyperfixations :: Yandere Simulator, My Chemical Romance, Satanism, demons, witchcraft, Creepypasta, Hazbin Hotel, DDLC

Special Interests :: Junji Ito manga, Death Note, psychology, Cannibalism, True crime, RAMCOA

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Byf :: we are not shy about talking about our trauma and struggles, but we will always put warnings. Please block our personal vent tag if this is triggering for you.

We do not give a fuck about syscourse, endos can interact, anti endos can interact, whatever. But if you use FDC or r/systemscringe and you make the mistake of posting OUR SYSTEM?? Yeah, you're gonna get bitten.

Pedophiles, fults, Christians, and anyone who is "transharmful" dni, we went through RAMCOA, cult abuse, and CSA, and your presence will trigger panic attacks. Paraphiles (other than MAPs) who are anti contact for harmful paras are chill.

Winterqueers, kandiqueers, LSDqueers, basedqueers, Xenosatanists, etc. and any fuckwit who posts on FDC/systemscringe, or claims ramcoa is a "conspiracy" FUCK OFF!!!!!

[djo]

sending you all the love! ❤️‍🩹💗

i was diagnosed with pcos when i was 12 because my mom has it and was thankfully on top of it. metformin is a go to for pcos treatment but it made me so ill that i just used birth control (the irony of being gay but having to use bc ugh). currently, im in the process of getting diagnosed with endometriosis on top of pcos!

it’s an uphill battle sometimes but all i can say is take care of yourself. because, at least in the usa, there’s this whole idea of working yourself to death and with chronic illnesses like pcos and endometriosis, you start to feel ashamed of asking for help. and they especially don’t care when the illness affects afab people the most. peep that weight comment you were worried about; i know a fair few of skinny girls with pcos so it’s not a weight problem even tho they treat it like it.

finding the right medical experts and building a solid social support really makes a difference!!!

thankfully there are a lot more resources nowadays to fit your lifestyle <3333 goood luck 💗💗💗

putting this under a read more because i'm yapping:

it's great that you were able to get a diagnosis so young based on family history! there's no history of pcos in my family (as far as i'm aware, anyway) so i spent a lot of my teenage years thinking my symptoms were normal and upon realizing they weren't, i was afraid to reach out for help because i knew it would be difficult. years later, it was definitely an uphill battle but i'm just happy to finally be making progress 🥹

i still have to undergo some tests and an ultrasound before i move forward with actual treatment, but my doctor did also discuss potential meds with me. metformin was her first recommendation, and while reading that it made you ill makes me a bit nervous, that's likely what i'll be starting with assuming i get an official diagnosis. that being said, i'm sorry to hear about the side effects! at least birth control is a suitable alternative for you ❤️‍🩹

i wish it wasn't the case, but you're so right. healthcare in the states is already a nightmare, and then on top of it you're expected to work yourself to death, which is hard on anyone but especially those of us with chronic illnesses, and in turn it feels shameful to ask for any sort of help even though we desperately need it.

the weight thing is also very true! i know there are people out there who aren't overweight and have been diagnosed with pcos, which makes it even more frustrating that it is largely viewed as a weight issue when it's not. even more so that it's likely that much harder for those of us who are overweight to get a proper diagnosis because the system runs on fatphobia + afab related illnesses aren't seen as important and there's still a lot of things they don't know or even understand about our bodies.

thank you for sending this though 🫶🏻 reading about your experience and your takes has helped a lot, and again, it's nice to know that there are people to reach out to when it comes to this illness. good luck to you on your endometriosis diagnosis! i'm sending all of my love right back to you 🩷

[bigbearbigworld]

i have officially been diagnosed with PCOS and Endometriosis. FINALLY getting the treatment I need and having a gynecologist finally listen to me is beyond beautiful. I'm so happy-- not so much to have those diagnosis but to have answers

[quinnysnursery]

When I said use his voice about his possible diagnosis I meant talk about how getting diagnosed, living before and after a diagnosis, etc. As someone with multiple conditions that have been officially diagnosed such as a learning disability, a speech disability, an immune deficiency, bone and joint instability, endo, pcos, and arthritis I know more about medical conditions need to be talked about and shared so that people know about it. But I know not everyone wants to come out about their diagnoses and I completely understand and I don’t blame them. I don’t know if I’m making any sense.

i do understand that awareness about theses topics are incredibly helpful (hence why i share my stories and struggles about conditions i live with), but i don't think it'd be fair to say someone has to chose between keeping their diagnosis 100% private or to speak about their medical conditions just because they have a platform, just because diagnosis' can be incredibly personal and the journey accepting them can be extremely long- at least in my experience

eitherway, the decision would 100% be up to him !!

[sevenrenny]

Having chronic migraine sucks, cause nobody took me seriously for years, telling me "Everyone gets headaches/I get headaches too!" meanwhile, without my medication, I'm incapacitated from the pain for four days a week on average, and everyone thinks I'm just being lazy when I physically can't get myself out of bed or even open my eyes, let alone feed myself without throwing up.

I go to work with ringing in my ears. I have to use a shower chair because the dizzy spells hit out of nowhere. I get blurry vision and sudden vision flashes. Even after the migraine episodes pass, I'm left with post-migraine where I'm physically drained and got massive brain fog.

And because of my GI issues (that's a whole separate medical issue that has landed me in the ER five times this year), I can't take oral medication because my body refuses to absorb most of it or it just decides my meds aren't on the guest list and activates the puke button.

The only medicine that seems to work is this autoinjector I take once a month... and it's the equivalent of about 600 USD per syringe. I have to jump through so many hoops to get it. It doesn't get rid of the migraines, just lessens their frequency and severity. (My current doctor has suggested I start Botox treatment but I don't feel financially ready for that.)

Even with my official diagnosis, hardly anybody believes me. "It's just a headache," "Ninety percent of people in the world get headaches!" "You need to eat vegetables more," "Try visiting my doctor. She's a gynecologist but she specializes in everything," "Have you tried meditation?" "Have you tried-"

I can assure you, whatever you're going to think of on the spot, I've already tried within the past 10+ years of my life dealing with this issue. This, and my GI issue and other chronic health issues.

I've also noticed people get uncomfortable when I explain to them what 'chronic' means. They squirm about it. They deny it's a thing, that there has to be a cure, I just haven't found it yet. They make up solutions on the spot. I kid you not, someone suggested I put a snail on my forehead for it to 'absorb' the migraine.

I have office workers telling me they know more than my medical professionals. I missed a few work days due to being in the ER from an intestinal issue, and had a coworker ask me what was I possibly doing to make myself sick, that- "You must have an unhealthy lifestyle, or you wouldn't be like this." Another coworker pitched in, stating that I must be doing something wrong. Family members insist on that assumption, too.

In other words: the chronic illnesses I was born with (the chronic migraine, gastroparesis, PCOS, chronic skin issues, other health concerns) are somehow my fault. I truly do believe this idea stems from how uncomfortable the thought of chronic illness makes them, and the belief that they can avoid becoming chronically ill themselves if they try hard enough, that you only get chronically ill if you did something to deserve it somehow.

I'm exhausted explaining myself to healthy people who believe I owe them my medical history. I outright say I don't want to discuss it. It just makes everyone prod harder. When I run out of energy and just want to rest and not speak anymore (because everything I say goes in one ear and out the other, anyway,) it's as if I've insulted them personally, scoffing that they're just trying to help.

This is not how you help. You're making me more tired than I already am. Literally, the things I do require help with (needing a ride home on occasion because I'm having aura symptoms and can't drive and there's no public transit, needing silence so the pain doesn't escalate, needing things to me repeated because the fatigue and brain fog made me miss what was said, needing time alone because I'm drained and can't go do the thing you want me to do, needing a ride to the ER) everyone refuses to do, which tells me this isn't about helping, it's about your curiosity regarding my health. It's about you needing to be right.

If you really want to help, just ask what can you do. That's it.

[slim-dickens]

My Second Endocrinologist Appointment

Yesterday I saw my endocrinologist for the second time. I did my homework, got my blood work done and my second letter of recommendation acquired. My doctor had, since our last appointment, spoken with my therapist about me going through with HRT, and he said he now felt confident working with me. So that's nice! I did still have to give him my psychiatrists letter of recommendation though.

After we established that he was ready to help me with HRT, we went over my bloodwork. He informed me my testosterone levels were a little high already. I personally thought it was kinda cool to have high levels of testosterone already, but he informed me it was not, in fact, 'cool'. He said it was a likely indicator of PCOS, as I do also have a little facial hair (I don't really think so, but my doctor does. I thought I just had mad peach fuzz).

Other than the high testosterone, everything else was fine! He did mention I could look a little weight for my health (I'm 5'3", 165 pounds), but that'll be easy. I have a sweet tooth I could just ignore.

Then we went over my testosterone options again.

This time around he was the one to mention Xyosted. In case I didn't mention it in my first post, Xyosted is a testosterone auto-injector. It was my first choice because I'm not great with needles. I was prepared to pay full price, but today I got a call that my insurance is covering it a little, and that means I can use Xyosted's company co-pay card! I don't know how much I'll save yet but I'll include that in a future post.

So we went over my choices, I chose Xyosted, and we decided my best course of action right now is to take one 50mg injection bi-weekly. In two months, after four injections, I'll get my blood taken again 5 days after that fourth injection.

After we set that straight, he had his scribe write the specifics of the prescription and it was over!

Again, today I got that call about my prescription being covered a little, and the woman on the phone also said it would be filled within a few days, so hell yeah man. I'll likely post again after picking it up.

Have a good day y'all out there :)

P.S. I'm curious about what other people are experiencing. What were you diagnosed with to get HRT? Did you need any kind of diagnosis at all? My official diagnosis is Gender Identity Disorder. I don't really agree that what I'm experiencing is a disorder but hey if it gets me the medicine I need, yk?

[yarns-and-d20s]

Autism & Gullibility

I need to talk about this:

Not for the obvious reasons (does my uterus do this? if it doesn't, is it because I have PCOS or because I'm non-binary?) (but also because she used "ie" when she should have used "eg"). No, I want to talk about this because I don't believe it. And I'm autistic. And because I feel a strong need to unpack why my disbelief and my autism are giving me thoughts about this at 11 am on a Thursday.

For a while now, I've been keenly aware of people not-so-quietly working to infantilise autistic people. In politics, it's largely related to trans people and transition; the vocal 'phobes with large platforms of various stripes talk about the number of trans people who are autistic, and talk about how we can't be allowed to transition because we're gullible and believe everything and thus fall for the "trans agenda" because we're helpless little children all our lives.

Online, I saw things like people arguing that it was wrong to ship Critical Role's Jester with anyone because she's "autistic-coded" and therefore too childlike and thus it would make her (fictional) romantic partner and the people who ship them together PDF files. This has also happened with other characters that fans have declared to be "autistic-coded". I've also seen discussion about whether or not dating an autistic person IRL makes one a PDF file because we're so childlike and innocent and it's easy to take advantage of us.

And. No? No. Fuck off. Fuck right off with that and when you've reached your fucking off destination please continue fucking off into the sun. I'm 41 years old. If another adult human lost their goddamn mind and wanted to kiss me, it doesn't make them a child predator. It makes them an adult attracted (improbably, with me as the subject) to another adult.

The infantilisation of autistic adults sometimes puts a focus on our interests (which are deemed childish, which is another rant I may have at another time) but usually I see people bringing up that we're naïve, that we're gullible, that we're easily lied to, that we believe everything.

I'm not self-ID'd. I've got an official diagnosis. And I do not, for one instant, believe what Naomi Wolf has said in that screenshot. It sounds not only improbable to me, but literally impossible. She's lying. She's making stuff up. She's spreading literal disinformation. And I know that, all the way to my bones.

However, several weeks ago, I had an instance where my mum lied to me and I believed her (we live together because of our health problems; neither of us is capable of full independence). She put two full boxes of ice cream bars on a far counter in the kitchen then got distracted doing something else. So I grabbed the boxes to put them in the freezer. She told me to stop. I wanted to help; I asked her what she was doing with them. She told me she was going to put them in the garbage. I didn't understand why--they seemed fine--but she sounded immensely sincere so I carried the boxes to the sink so the bars could melt. (She then yelled at me to stop. She was going to take them out of the boxes and put them in a freezer bag so they'd take up less space.)

There's a reason why I believed her. People throw out food. People throw out perfectly good food. Plus there was her tone--she was very matter-of-fact about it. This can happen to me a lot IRL--if someone says something that seems plausible in a flat enough tone, well, I don't have any reason to disbelieve them. Why would someone who cares about me lie to me?

(There's also things like "Did you know gullible isn't in the dictionary?" "...Really?" "[insert howls of laughter at the gullible dipshit]" - for me, at least, that "really?" indicates that I'm not actually believing you, I require more information, and if I ever hear anybody say "... Really?" to something I've said, I interpret it as a cue to expand further.)

I generally find I don't believe something that sounds implausible to me, no matter the tone. We had a neighbour for years who had this very loud car that he would allow to sit beside our house and idle for at least 10 minutes every time he was going to drive it. Eventually my mum was so annoyed she confronted him about it, and he told her that it was "because the car is old" and the "engine needed to warm up", no matter the weather. The car couldn't have pre-dated the 1990s. I didn't believe him. By the same token, if someone waltzed up to me on a clear, sunny day and announced that the sky is pink, I sure as hell wouldn't believe that, either.

We can't read tone on the internet, that's true, unless we're watching a video. But I can't be convinced of just anything. I couldn't be convinced that Ancient Rome wasn't a thing, I couldn't be convinced that Helen Keller was a fraud. And Wolf ain't convincing me that the uteri of vaccinated people give unvaccinated cis women menstrual cramps. It brings up too many questions. Did these 60 women turn to the women around them and ask if they'd been vaccinated? Did they ask the hotel staff the vaccination status of whomever stayed in the hotel room before them? Why don't vaccinated men give them cramps? Or do they and she just left that out?

Being autistic doesn't make me a naïve fool, floating through the world believing every little thing that's whispered in my ear. It means I struggle to read tone. It means that I want to trust people--I especially want to trust people I'm supposed to be able to trust, so when they deadpan at me or speak matter-of-factly that they're going to throw away food, I believe that, and will act accordingly.

It's really, really hard to convince me of something that sounds out of the ordinary or wildly weird. I don't believe conspiracy theories. I don't believe everything I'm told or everything I read, and it's way easier for me to disbelieve stuff I see online. I do, in fact, fully and thoroughly grasp the difference between fiction and reality (and boy howdy is that ever another rant for another day).

So now, I get to the actual point of this: there are always, always, two conversations happening when it comes to autism and autistic people. There's the conversation that autistic people have about ourselves. Then there's the conversation that allistic people have about us. They don't include us. Ever. They want to talk about us, make decisions for us, make up rules about us. But they never, ever want to talk to us--or, more importantly, with us; or, even more importantly, listen to us when we tell them about our lives and epxeriences.

Whether it's real life or fucking shipping fictional characters, the allistics make declarations about us and what we're like and what we need.

And they never, ever actually ask us what our lives are like, how we experience the world, how they can work with us, what we want, what we need. It'd be too difficult.

If you've met one autistic person, you've met one autistic person. Ask us about our supposed "gullibility" and let us explain what's actually going on. Let us speak and be okay with it when we contradict you when you pass edicts--of consequence or not--about us. We're people with autonomy. Many of us are adults. Probably most of us are adults, given the sheer number of adult years humans live compared to child years.

No, we don't see the world the same way you do. Yes, the world is often very difficult for us to navigate.

But guess whose fault that is.

[mischiefmanifold]

when the doctor calls about my lab results in the next couple days (they said Monday or Tuesday) I'm going to ask if they do referrals or if they have a neurologist I can see because I've really needed one for several years now

hoping to get a tourette diagnosis and to be tested for seizures with a neurologist

also hoping to get (at least one step closer to) a PCOS diagnosis, which is part of the labs I did on Thursday last week (testosterone/androgens, general labs, and vitamins b12 and d3)

if my theory is right then the labs will come back with elevated testosterone/androgens

also want to ask about a full psychological evaluation (specification on trauma disorders maybe?) because I was told I needed one at 16 (almost 3 years ago)

other doctors I need to see (and what for)

endocrinologist (esp. if the labs come back with elevated androgens) - PCOS diagnosis, other hormone testing(?), will have to see if/when I decide to start T anyway

gynecologist - way overdue (never been before)

gastroenterologist - colonoscopy (overdue), other gastrointestinal problems including GERD

rheumatologist (again, lol) - official hEDS evaluation/diagnosis

neurologist - tics (starting ~8 years old), potential seizure activity, maybe about sleep problems?

cardiologist - POTS test and diagnosis (I already know I have it which makes this whole process more annoying lol)

nutritionist - can't eat food like a normal person (not the most important by far but I think good nutrition may be able to help with some other problems)

[greatfruitboo22]

I'm going to rant because I don't feel like I have anyone I can talk to about anything, really. I don't have money for a therapist, and I don't want to be a burden. I have been struggling and honestly the urge to just disappear is so fucking strong. First my mental health is pure shit right now. My depression at an all time high. All I want to do is is sleep. I have no motivation to eat, or do anything honestly. I can't sleep through the night. The only peace I have, no people to bother me and no one to prove myself to. Then I sleep all day, avoiding my responsibilities and others. I know part of it is because of my ADHD and Autism. Which until recently, I didn't realize I had both. And when I talk about it, I just get push back from my mom saying, "You aren't autistic I would know if you were. Or It only works if you have an official diagnosis, "but that means that it could be used against me because it's on a document that others can see. And that scares me. There are still so many places and people who use that against you. I'm scared that while I'm re-learning how to function without masking and not pushing myself back into burnout that someone will use it against me. I have gone back to a dark place where I want to die because I have lost my footing, and because I don't know where I'm going, it feels like a never-ending pit. I feel nothing and everything all at once. I don't feel like I have support anymore. Since my burnout, I quit my job that I liked because I couldn't handle being a mask, and getting statements like your face needs to show more emotion. I'm sorry that in order for me to function, I can't make faces. I don't want to smile to appease someone. Because I left that job, I have no money, one of my accounts negative, and when I think I fix it, it just gets worse. I started a new job, got two weeks in, and missed an entire week because all I could do was sleep. Depression isn't a real illness, so why did I miss it right? Jobs don't allow for mental illness days. Only sick days. But I am sick. Mental illness is a sickness of the brain. My brain that tells me these people can hear you make calls, they are judging you. They make fun of you behind your back. People are hard for me. I want friends, and I want to be kind, but eye contact makes me anxious, talking makes me anxious, and keeping conversations makes me anxious. I get anxious getting out of bed each day. I get anxious about eating in front of people. It's overwhelming. I am also dysforic. I started using they/them pronouns about a year ago, and only like five people in my life made an actual effort to use them. I am non-binary and while I still prefer femme presenting, I don't feel like a female. My family won't use my pronouns. My dad was confused and didn't try. My mom gets mad when I correct her. So many times I say those aren't my pronouns I get back no one will use those for you, how do others know, you aren't correcting them, you are my daughter. My aunt barely accepts I'm bisexual. My sister tried for a little while but stopped when it got too hard for her. I just want to feel like me in my skin. I am dealing with weight gain due to PCOS, and I hate it. I feel like I can't lose any weight. I want to live somewhere without the rest of my family, but I cannot physically afford to live on my own. Everything is so expensive. It feels like all these things are just piling on, and I want it to stop. I want to feel some freedom. I feel so isolated in the place I am in right now. Everyone around me is growing up and moving on. I don't feel like I have friends anyone. I don't know who is there anymore. Not that I would ever say anything about how I feel. I just wish I could breathe.

[osmiabee]

Hi. I'm a biologist of colour with PCOS. There is significant amount of error and misinformation here.

Hirsutism is NOT a diagnostic criterion for PCOS - let alone the most important one - it's one of many indicative symptoms which can include adult acne, infertility, "male pattern" excess hair growth and "male pattern" balding - There are not considered diagnostic criteria as these are secondary symptoms that occur due to excess testosterone.

The diagnostic criteria are all direct symptoms: you need 2/3 for official diagnosis: Irregular periods (self-reported), Visible cysts on ovaries (via ultrasound), and Excess "above range" Testosterone (via blood test),

When you test for what is considered a "healthy range" you have to exclude people who are unhealthy and exhibiting symptoms, as they will skew the data. Worst case scenario this can lead to people NOT getting the diagnosis and treatment they need because they are considered "normal" even while exhibiting secondary symptoms.

The 97.5th percentile is a common statistical tool that excludes the extremes of the data to set a realistic average range. When someone comes in with symptoms of a disease (in the example above, men with osteoporosis) and you test them and find their hormones are different to 95-97.5% of a healthy, asymptomatic population, you can then point at that hormone as a potential cause of disease and correct it.

I cannot describe to you how important it is to exclude people with the "makes too much testosterone" disorder, while testing a baseline population to get an idea of the "normal/healthy" levels of testosterone.

Because PCOS is so common (2-10% of the population depending on your statistical model) that bar/threshold for testosterone in women is set high. Likely because even while trying to exclude people exhibiting PCOS symptoms (including excess hair) so many people with underlying PCOS (and high androgens) are largely asymptomatic (half of cases accourding to the NHS), and either live their whole lives unaware or do not get tested until they have significant fertility or secondary health problems later down the line.

In my own case when I got my results back I was the third woman that *day* that my doctor had to call to say "sorry, your androgen results were quite high but technically within the normal range," likely because that 97.5 percentile bar they're using as a baseline is skewed by the fact that a huge proportion of women have PCOS, and even while exc they can't exclude us all from the baseline based on diagnosis, family history, and secondary symptoms obvious to doctors (like hirsutism) alone!

These are all tools made to inform individualised medicine: despite my "normal range" androgens I am currently taking Spironolactone (a testosterone reducing drug - commonly used in HRT) to combat the effects of PCOS because my "in range" hormones were still clearly too much for my individual body, and caused symptoms that made me unhealthy (anaemic and in severe pain due to periods + painful acne) and put me at risk of things like diabetes and heart disease later down the line.

This isn't about just arbitrarily excluding women with "too much" hair. But about setting a useful baseline for XX-female high-androgen disorders.

BECAUSE BEING ABLE TO ACCURATELY DIAGNOSE PCOS IS A GOOD THING.

The linked study above that was immediately dismissed as weird and racist, looked at the symptoms of a diverse group of american women with PCOS, and found preliminary data that the areas of skin that respond to high androgen levels (due to PCOS) differ depending on race. (for example - African Americans commonly developed facial hirsutism under their chins, while hispanic individuals were more likely to develop it on their arms and legs).

STUDIES LIKE THIS ARE GOOD, ACTUALLY, BECAUSE IF WE ONLY HAVE DATA FOR WHITE PEOPLE, POC WILL BE UNDERDIAGNOSED.

These kinds of studies are important, because it tells dermatologists where to look for secondary symptoms of PCOS in their patients, which is important because 92% of people with PCOS have symptoms affecting their skin, and 1 in 4 undiagnosed people are referred for PCOS diagnosis by a dermatologist.

IN CONCLUSION: This isn't about defining "woman" or "normal female" or setting "arbitrary" "spider eating" statistical rules for what is an acceptable testosterone range. It's about creating an accurate model for disease, which despite potentially affecting 1/10 people with uteruses, is massively underresearched and underdiagnosed. Because of medical misogyny. And racism to boot.

It's true that huge swathes of medical practice are rooted in misogyny and racism, and uphold a gender and sex binary that is, in reality, far more flexible and complicated than historic tests would allow for, but this post is inaccurate and relies on borderline deliberate misinterpretation of the medical data to make that point.

I forget why, but I was on the Wikipedia page for polycystic ovarian syndrome, and I started researching hirsutism in women, and I learned the following things in this order:

there's a diagnostic criteria used to evaluate how hairy a woman is

This is important because being too hairy is a diagnostic criteria of most disorders that cause hyperandrogenism

Disorders that cause hyperandrogenism can be diagnosed by...measuring how hairy you are (this is the main and most important diagnostic criterion for PCOS)

Disorders that cause hyperandrogenism are important because they are correlated with obesity, infertility, and...being too hairy?

I think to myself, wait, what is a normal range for testosterone in women? I find this article...which set reference ranges for "normal" testosterone levels in women...EXCLUDING WOMEN WITH PCOS?

Quote: "Polycystic ovary syndrome (PCOS) is another notable condition in genetic (XX) females, which is characterized by excessive ovarian production of androgens. This condition is included for comparison with DSD, as the affected females with PCOS are genetic and phenotypic females. The elevated levels of testosterone in these females can lead to hyperandrogenism, a clinical disorder characterized variably by hirsutism, acne, male-pattern balding, metabolic disturbances, impaired ovulation and infertility. PCOS is a common condition, affecting 7%-10% of premenopausal women."

So: the study claims to demonstrate a clear distinction between the normal range of hormone levels in "Healthy" men and "healthy" women...with "healthy" being defined in the study as...having hormones within the "normal" range.......................

So I researched what the clinically established "normal" range for testosterone in women is

THERE ISN'T ONE????

Quote from the above article: "Several different approaches have been used to define endocrine disorders. The statistical approach establishes the lower and the upper limits of hormone concentrations solely on the basis of the statistical distribution of hormone levels in a healthy reference population. As an illustration, hypo- and hypercalcemia have been defined on the basis of the statistical distribution of serum calcium concentrations. Using this approach, androgen deficiency could be defined as the occurrence of serum testosterone levels that are below the 97.5th percentile of testosterone levels in healthy population of young men. A second approach is to use a threshold hormone concentration below or above which there is high risk of developing adverse health outcomes. This approach has been used to define osteoporosis and hypercholesterolemia. However, we do not know with certainty the thresholds of testosterone levels which are associated with adverse health outcomes."

What the fuck?

What the fuck?

It's batshit crazy to make a diagnostic criteria for medical disorders by placing arbitrary cutoffs within 2-5% of either end of a statistical distribution. What the actual fuck?

"The results came back, you have Statistical Outlier Disease." "What treatments are available?" "Well, first, we recommend dietary change. You should probably stop eating so many spiders."

Another article which attempted to do this

Quote: "Subjects with signs of hirsutism or with a personal history of diabetes or hypertension, or a family history of polycystic ovarian syndrome (PCOS) were excluded."

"We're going to figure out the typical range of testosterone levels that occur in women! First, we're going to exclude all the women that are too hairy from the study. I am very good at science."

Anyway I got off topic but there are apparently race-specific diagnostic tools for "hirsutism." That's kinda weird on its own but when I looked more into this in relation to race I found this article that straight-up uses the term "mongoloid"

[thestalkerbunny]

For the love of god I could had swore you were pretty openly Neurodivergent, either autism or ADHD. That wasn't the case?

Well, it's one of those things where I don't have the official diagnose to back it up but a lot of my base behaviors, antics, and general energy points in those directions, based on friends who have formal papers backing it up who observe me in my natural wild state. It's one of those things where I highly speculate, I HAVE something, I just don't know the name of it. I have speculation of Autism or ADHD or a possible Comorbidity of both. (Comorbid is when two medical things happen at the same time, sometimes within relation to each other.)

I have done those formal certified tests they have where you can figure out how leaning into it you are-but I give online tests as much salt as I do French fries-which is not a lot-even if they are from a medical professional based source.

While a formal diagnosis would probably give me a soundness of mind and give me a better sense of direction on what I could do to make my life millions of times easier, getting anything diagnosed as a female humanoid in North America is a MASSIVE pain and can often get expensive. And expensive if I need to start taking a new medication. Paying for my anxiety meds and PCOS meds is already a pain in the ass financially.

Plus rn, I don't feel inconvenienced in anyway or feel that I need to change any behaviors or patterns (Although there's probably some modification that can be done to become more efficient.) So unless someone wants to drop 500 dollars on me so I can get tests run like I'm a rodent at a lab, I'm fine with my status of neurodivergence being a strong 'Maybe'.

[lostbimoonlight]

Out of Control

I’ve been living with depression since I was ten years old. I’m not sure you can technically diagnose a 10 year old with depression, but I’m pretty sure a normal kid doesn’t think their parents would be better off if their kid was dead so there you go.

I’d accidentally left the hose on in the side yard after playing in the sprinkler. When the water bill came, it was like ten times bigger than it normally was and my parents freaked out. They didn’t punish me, but that didn’t stop me from punishing myself.

When I got to be 18, I was finally able to start taking antidepressants and things started looking up. It got even better when I was officially diagnosed with PCOS and started taking medication for my hormone imbalance. I had a job, friends, was studying in college, indulging my passion for writing cheesy romance. Things were as good as they possibly could have been for me, but there were still times when I was swept under.

I thought that that’s how I was going to be for the rest of my life. Basically normal, with a few hiccups along the way where I forgot why I wanted to live for a little while. That is, until this year, when my prescription refills ran out and I didn’t have medical insurance to see a doctor. 

Things spiraled out of control way faster than I ever could have expected.

I lost my grip on all the responsibilities I had been carrying, and it felt like every illusion I had had been shattered. My mom gently suggested that my family history of Bipolar disorder may have emerged in the absence of the medication that was likely suppressing it all these years.

The idea of having Bipolar disorder is scary enough, but without medical insurance, or any resources to get a proper Yes or No diagnosis I was adrift. Hell, I still am.

Everything I thought I knew about myself was thrown out the window. I was forced to pick up the shards of who I am and examine them in the harsh light of day for the first time. There was a lot lurking on the inside that got let loose.

After a few weeks, and a little emotional distance, I’m able to reflect on this “episode” with more reason. I wasn’t as strong, or confident, or capable as I had been telling myself I was. I’m not as healthy, not as well adjusted. I realized that even if I get a proper diagnosis and it turns out to be “just” uni-polar depression, I haven’t been doing any of the things I needed to do to care for myself.

For so long I thought, “I have depression. So, what? Everybody’s depressed. I have shit to do.” So I didn’t adjust my diet, wasn’t careful about the substances I put into my body or the way they’d interact with my imbalanced brain chemistry, wasn’t active or mindful. I didn’t realize until very recently that all this time I thought I was being successful. In truth, I’ve been running on empty, white-knuckling it at 90. And I’ve been forcing a smile on my face the whole time.

A new version of myself that has been lurking under the surface all this time, took the wheel and nearly drove me off the road. As terrifying as the last few weeks have been, it might have just been the wake up call I needed to get my life on the right road. 

[onecomplexmess]

Yesterday was my birthday, I don't know why but my will to live suddenly plummeted to a zero. It could be a plethora of reasons but either way I've come up with one solution fix my body up to donate everything I can.

That involves studying up what can be donated. What is wrong with my body, what I can fix and what I can't.

For starters what do I know is wrong with my body BEFORE I go to the doctor and have a full body evaluation.

My weight is 130kgs coming to a whopping 38.4 BMI

A healthy weight for someone my height is

67.7 kgs I've decided I'm aiming for a 20 BMI so that the body is healthy and in form for donation.

I'm not planning to starve myself to get there, I'm guessing it's going to take much longer to lose almost half my body weight in 1 year is not quite healthy but I'm still aiming for lower so that I can more successfully achieve my goal of donating and health .

Issues I have within my body:

PCOS, insulin resistance, fatty liver, high blood pressure, keratoconus and others I still don't know.

Issues with my habits:

Bad sleeping habits, bad eating habits, bad hygiene , no sports, barely go outside, very addicted to comfort.

Mental health issues:

BPD, BED, Depression, anxiety, (possible NPD, ADHD and/or autism need to get a proper diagnosis to ensure everything is ok)

Things that need to happen:

Make all the tissues I can donate be in prime condition (except my corneas those are fucked already so I can't donate those) , by taking care of my skin, quit casual smoking, quit casual marihuana use , quit alcohol for good , exercise, eat healthy stop self harm, get proper medication and treatment for all conditions my body has.

So this is officially started

Welcome to my life after death

Day 1/365