#i do have to see a endocrinologist for pcos

[vvh0adie]

YALL IN 2021 I HAD ACUTE HEPATITIS A

AND DIDNT EVEN KNOW IT

THE FUCKING DOCTOR NEVER CALLED

AND HERE I WAS WITH MY SIDE HURTING WHERE MY LIVER AT

THATS WILD😭

[intersex-support]

Intersex Support FAQ

1. What is intersex?

Intersex is an umbrella term that describes people who have variations in sex characteristics that fall outside of the sex binary. This includes variations in genitals, internal reproductive organs like testes and ovaries, chromosomes, secondary sex characteristics, and/or the way that your body produces or responds to hormones. Some examples of intersex variations include AIS, CAH, PCOS, Klinefelters, hypospadias, and more. 

The three main factors that define intersex variations are: 

Variation in sex characteristics 

The variation falls outside of the sex binary and is different from what is considered typical “male” or “female” development. These variations in traits might often be stigmatized and discriminated against for being outside of the sex binary.

This variation is either present from birth or develops spontaneously later in life. It is not caused by transitioning or by something temporary like a medication side effect, tumor, or other medical diagnosis. 

(This definition is inspired by InterACT).

2. Does ____ count as intersex? 

There are around 40 different intersex variations that are currently known. InterACT”s intersex variation glossary lists out those intersex variations and gives a brief description of each one.

However, we know that isn’t a complete list. People have intersex variations that haven’t been medically researched yet, or might have a rare variation that the intersex community isn’t aware of yet. 

There are also some variations that might seem on the border between perisex and intersex. Some types of hormonal or reproductive diagnoses might not have a clear answer on whether they’re intersex or not. 

Ultimately,  intersex is a social/political identity rather than a strictly medical one. Increased research and changing social attitudes can cause the definition of intersex to expand over time. Regardless of whether someone has a confirmed intersex variation or an “intersex adjacent” diagnosis, if intersex resources are helpful to you, we hope that you continue to use them and act in solidarity with the intersex community. 

On this blog, we do include PCOS with hyperandrogenism as part of the intersex community. Check out our PCOS tag for more posts about our reasoning, and PCOS specific resources.

3. Am I intersex?

We cannot diagnose you with an intersex variation over the internet. We can share resources such as the intersex variations glossary, share tips for navigating the medical system, and share information on other non-clinical signs of being intersex. 

Some questions to ask yourself that can help you start the process of intersex discovery:

What do my sex traits (genitalia, secondary sex characteristics, hormone levels, etc) look like? Does this seem like it lines up with the “typical” descriptions of those sex traits? 

Do I have any information about my birth? Were there any complications? Did doctors do extra testing at birth? Did doctors take me away from my parents for long periods of time? Did it take me longer to have my sex assigned at birth?

What was puberty like for me? Did I have early or late puberty? Did I have to go on hormones to start puberty? Did I have any variations in puberty, such as unexpected breast growth, irregular periods, or other changes? Did I go through puberty at all?

If you’ve tried to have children, are you infertile or struggling with fertility?

Did I have any unexplained surgeries or medical procedures as a child? Was I ever told I had to have organs removed and was told it was because of a cancer risk? Did I have to be on specific medications or hormones throughout my childhood? Did I have to go see a doctor more frequently? Did I go to an endocrinologist or pediatric urologist as a child? 

Do I have surgery scars or scar tissue? Do I have more frequent UTIs than typical?

Do I have access to my medical records? Is there records of hormone panels, ultrasounds, physical exams, surgeries, or other medical procedures? 

This kind of information can help you start to piece together if you think you might have an intersex variation, or if you think your intersex variation was hidden from you. 

If you’re sending in an ask trying to figure out if your symptoms line up with a specific intersex variation, please share as much information as you’re comfortable with so that we can answer with the most helpful resources. 

4. Can I self diagnose as intersex? 

It’s complicated! Intersex is different from other LGBTQIA identities, in that it’s not only about self determination, but also about our embodied experience in a very specific way. In order to be intersex, you have to have an intersex variation. And there are many intersex variations that can only be confirmed through medical testing, so it’s not something that is easy to self-diagnose.

However, we recognize that the medical system is expensive, discriminatory, and often actively hides information about people’s intersex variations from them. (it wasn’t even until 2006 that the AAP stopped recommending that doctors lie to their patients about intersex status, so many intersex adults were born before that policy change!) Considering all that we know about intersex oppression, curative violence, and medical abuse, it feels incredibly cruel to tell people that they have to force themself through that system in order to seek answers. 

So, we understand that there are ways of finding out that you are intersex without having a specific, confirmed, medical diagnosis. Many of us might find out that we’re intersex because we realize that our genitalia visibly looks different, and we can tell that we are intersex, even if we don’t know our specific diagnosis. Others might find out that we’re intersex because of strange discrepancies in our medical record. We might find out through discovering surgery scars on our body. We might go through puberty and realize that we’re developing in an atypical way to our peers. We might do a lot of research into intersex variations and have a pretty good guess into what variation lines up with our experiences. We might have some test results that help us understand we have intersex traits, even if we don’t know our specific diagnosis.  

Before self diagnosing, we think it’s important to do thorough research into intersex variations, so that you truly understand what intersex means, what intersex variations exist, and understand how that information applies to yourself. It’s also important to be considerate of how we interact in community spaces, and respect other intersex people's boundaries as you engage in a questioning or diagnosis process. 

5.  Are intersex people trans?

Some intersex people are trans, and some aren’t. Most intersex people are still assigned a gender at birth, and many intersex people who are raised as one gender and then later identify as another gender identify with the label trans. Intersex people can be cis or trans just like any other group of people. 

Many intersex people have complicated relationships with gender, and don’t feel like labels like cis or trans really fit their experiences. For this reason, terms like intergender and ipsogender were coined.

6. Are intersex people LGBTQIA?

It’s complicated! The “I” in LGBTQIA stands for intersex. Intersex history is intertwined with other parts of queer history. For example, the very first protest for intersex people in the United States was organized by Hermaphrodites with Attitude and Transexual Menace. There are intersex inclusive versions of community pride flags. Many intersex people view their intersex identity as a queer identity. Intersex oppression overlaps in many ways with homophobia and transphobia. 

However, not all intersex people think that intersex should be included in the LGBTQIA community. Sometimes this is for bigoted reasons, with intersex radfems who use this stance as a way to be transphobic. But there are also intersex people who think that the “I” should only be included in the acronym when intersex people are actually meaningfully being included in queer spaces and resources. Many of us feel frustrated when people put “LGBTQIA” on a resource but then don’t actually have any intersex specific information in those resources. 

In general, this is an ongoing intracommunity discussion where we don’t have a consensus. 

7. Are intersex people disabled? 

It’s complicated! Intersex is an umbrella term for many different experiences, and there is not one universal intersex experience. Some intersex people identify as disabled. Some intersex people do not.

Many intersex variations do cause disabling impacts in our bodies and lives. Some intersex variations are comorbid with other health conditions. Other intersex people become disabled because of violent normalizing interventions we’ve survived, such as forced surgery or other types of medical abuse. 

Intersex people are also impacted by many of the same structures of oppression that harm disabled people. Both intersex people and disabled people are harmed by ableism. Both intersex people and disabled people are harmed by pathologization. Both intersex people and disabled people are harmed by curative violence. 

In the book Cripping Intersex, Celeste Orr explores all these concepts and creates something called “intersex is/and/as/with disability,” which is a model to think about all these different and sometimes conflicting relationships with disability. Some intersex people might identify directly as disabled. Others might sometimes think about the way that intersex is treated as a disability. Other intersex people might think about intersex and disability as a way to have solidarity. All of these relationships with disability are meaningful parts of the intersex community. 

8. What is intersex oppression/intersexism/interphobia/compulsory dyadism? 

Intersex people face a lot of oppression in many ways in society. At the core, intersex oppression relies on the idea that the only acceptable sex traits are sex traits that fit into the sex binary. Intersex oppression relies on mythical ideas of the “ideal male or female” body, where someone's chromosomes perfectly line up with their genitalia and internal reproductive organs, with perfectly normal hormone levels and perfect secondary sex characteristics that don’t have any variation. When people don’t fit into that “perfect” sex binary, they are seen as less valuable, abnormal, and threatening. There is then a societal pressure to eradicate any traits and people that fall outside of the sex binary, which causes a lot of targeted discrimination of intersex people. This form of oppression is called “compulsory dyadism,” and was coined by Celeste Orr. 

Compulsory dyadism is also rooted in, overlaps with, and is the foundation for many other types of oppression. For example, ableism is another form of oppression that creates ways of harming people whose bodies and minds are labeled as less valuable for societally constructed reasons. Check out Talila Lewis’s definition of ableism for more information. Another example is how racialized people are targeted by sex testing policies in sports--both intersex and perisex women of color are consistently targeted by sex testing policies designed to exclude intersex people from sports. Another example is that homophobia and transphobia contribute to why intersex bodies are seen as threats that need to be eradicated--society views existing with intersex sex traits as a slippery slope to growing up as a gay or trans adult. Compulsory dyadism is also at the root of a lot of transphobic rhetoric about how transitioning “ruins” people’s bodies. All these forms of oppression are connected. 

There are a lot of ways that compulsory dyadism causes intersex people to be targeted and discriminated against. A huge issue is nonconsensual surgeries at birth, that attempt to “normalize” ambiguous genitalia, remove intersex people’s gonads, and otherwise alter genitalia or internal structures. These surgeries are often referred to as intersex genital mutilation, or IGM. These surgeries do not have any medical necessity, but doctors lobby to continue to be allowed to perform them anyway. These surgeries can sterilize intersex people, cause lifelong trauma, and also cause many disabling medical complications. Alongside IGM, intersex people also face a lot of different types of medical abuse. 

Besides curative violence and medical abuse, intersex people also face discrimination in our schools, jobs, and public places. We face legal discrimination in changing our names and sex markers. We face discrimination from institutions like CPS, which often target parents, especially people of color, that refuse to put their children through intersex genital mutilation. Many intersex people survive targeted sexual violence. We have a widespread lack of resources, visibility, and representation. Many people still have prejudiced ideas about intersex people and call us slurs. These are just a few examples of the many way that interphobia/intersexism show up in our lives. 

9. What is intersex justice? 

Intersex justice is a framework created by intersex activists through the Intersex Justice Project as a way to fight for intersex liberation. 

“Intersex justice is a decolonizing framework that affirms the labor of intersex people of color fighting for change across social justice movements. By definition, intersex justice affirms bodily integrity and bodily autonomy as the practice of liberation. Intersex justice is intrinsically tied to justice movements that center race, ability, gender identity & expression, migrant status, and access to sexual & reproductive healthcare. Intersex justice articulates a commitment to these movements as central to its intersectional analysis and praxis. Intersex justice acknowledges the trauma caused by medically unnecessary and nonconsensual cosmetic genital surgeries and addresses the culture of shame, silence and stigma surrounding intersex variations that perpetuate further harm.

The marginalization of intersex people is rooted in colonization and white supremacy. Colonization created a taxonomy of human bodies that privileged typical white male and female bodies, prescribing a gender binary that would ultimately harm atypical black and indigenous bodies. As part of a liberation movement, intersex activists challenge not only the medical establishment, which is often the initial site of harm, but also governments, institutions, legal structures, and sociocultural norms that exclude intersex people. Intersex people should be allowed complete and uninhibited access to obtaining identity documents, exercising their birth and adoption rights, receiving unbiased healthcare, and securing education and employment opportunities that are free from harm and harassment.” (Source: Dr. Mel Michelle Lewis through the Intersex Justice Project.)

There are seven principles to intersex justice: 

Informed consent

Reparations

Legal protections

Accountability

Language

Children's rights

Patient-centered healthcare

10. What is intergender? 

Intergender is a gender identity for use by intersex people only. It doesn’t have one specific definition-it is used by intersex people to mean a whole variety of things. It’s used to describe the unique ways our intersex experience intersects with and influences our gender.  Some people use it as a modifying term, such as calling themselves an intergender man or woman, as a way to explain the way being intersex affects their identity. Other people identify solely as intergender, and have that be their whole gender. 

11. What is dyadic/perisex/endosex? 

All are words that mean “not intersex.” Different groups will have different preferences on which one they like to use. 

12. Is hermaphrodite an offensive term? 

Yes. It is an incredibly offensive slur that perisex people should never say. Many intersex people have a very painful history with the slur. Some of us reclaim the term, which can be an important act of healing and celebration for us.

12. Can perisex people follow? 

Feel free, but understand that questions by intersex people are prioritized! Anyone is welcome to follow.

13. I’m writing a character who’s intersex…

Check out this post:  https://trans-axolotl.tumblr.com/post/188153640308/intersex-representation. If you’re writing about intersex people for a paid project, you should pay an intersex person to act as a sensitivity reader before publishing. 

Check out our Resources and Intersex Organizations pages as well!

[fatphobiabusters]

medical fatphobia and weight loss medication tw i guess

today i saw my endocrinologist, and he asked me if i had ever considered going on a medication for weight loss. this has never happened to me before, and i told him that no i hadn't, and he told me to think about it.

i think the medication is wegovy, which is a medication originally for insulin resistance/diabetes that is now also approved to be prescribed "for obesity".

i just don't know what to think. i don't even really know what i'm asking specifically- maybe just if that's ever happened to y'all or if any followers have insight. i feel like i need to hear thoughts from other people who are actually educated on fatphobia and understand what it's like. thanks for any response you may have

Im not sure why an endo would think it's their place to talk on weight loss. That's something your primary doctor, the one who has your complete records and history, should do. Even if I think it's bad advice and rooted in fatphobia, at least that doctor has your whole info. It's uh. Audacious for these secondary doctors to think they should recommend weight loss, ever. They simply don't know enough about you as a patient to ever """"ethically""""" recommend it.

Like my gyno recommended weight loss to me for my pcos (Even though pcos causes weight gain but okay 🙄) like, uh, do you have my blood tests? If so you'd see they are fine. Did you minor in nutrition? No? Why are you talking to me about this shit then. I almost went off on her about how I have disordered eating and texture aversions so I'm lucky if I eat enough variety of foods to be nutritionally complete. (That whole thing was a wild ass mess. Like didn't expect aphobia in the gyno appointment but okay. By the time the weight loss talk started I was stunned. Two times I've seen this woman and she stunned me both times.)

Anyway all that to say is that, doctors might be educated on specific things but man, they can be ignorant and audacious.

I garentee our follows have experienced something like this. I'll post it so if they want to add on they can.

Im sorry that you had to deal with that.

-mod squirrel

[mayhem-moth]

I have a question about intersex

If you have traits that are outside of the sex that you are assigned as due to high testosterone likely due to pcos but haven't faced a lot of discrimination do to being in relatively safer areas and self isolation, as well as you mom not forcing you to do any treatment you don't want to do. does make you intersex?

Because I remember people saying its an experience thing and at most right now its just subtle ways the doctors see me and the way the disorder is classified in general with things like the hair on my face being called out and treated as an unwanted symptom and the doctor wanted to refer me to an endocrinologist to get it treated but my mom letting me decide. So I am actually treated quite well. I just have some traits that dont look like other people with my agab my age. And I heard a lot of people face a lot of discrimination for this stuff.

Also im sorry to anyone who sees me keep mentioning this stuff its just a bit of a revelation and I dont have all the answers i want right know. It explains why my body is the way it is and it feels less distressing than it used to be because there was a time i thought something was really wrong with me.

[batmanisagatewaydrug]

Hello.

I have an appointment with an endocrinologist coming up to diagnose pcos. My mom has it. It’s not diagnosed but I know I have it.

I know part of getting the diagnosis is a pelvic exam. I really don’t want to do the pelvic exam.

I live in Canada these appointments take a long time to get.

Do I need to do the pelvic exam to be diagnosed? I don’t want to prolong the time it takes to get treatment? So I’m thinking I should just suck it up.

hi friend,

PCOS can sometimes be diagnosed with bloodwork or with external ultrasounds, but I'm not your doctor and I can't say whether that's right for you! if you haven't already, I'd recommend reaching out to your endocrinologist to discuss your concerns and potential alternatives to the pelvic exam as soon as possible to see if that's feasible for you.

[drinkyourfuckingmilk]

If you don't mind me asking, how do you manage your chronic illness? I'm still in the process of diagnosis, but I'm starting to get pretty demoralized with my health slipping

I was referred to a endocrinologist for my PCOS and he's been amazing in terms of helping me reduce the horrific roller-coaster hormone imbalances and insulin-resistance, the only issue I'm still struggling with is the bad fatigue and hairloss (I'm lucky I've got so much of it though, it just sucks being covered in hair after a light breeze hits my head). I just try and stick to what I've learned makes my symptoms decrease or disappear like regular exercise, eating healthy, making sure my vitamins are supplemented if I'm more prone to certain deficiencies, getting regular blood tests to make sure my hormones aren't in full revolt, trying different medications that help reduce the hormones that are throwing me out of whack etc

It can be expensive to see a specialist so I sort of ration out my appointments, but if its affordable for you its worth the relief to even just have a plan in place. And sometimes you'll have harder times with the symptoms and feel like you're back at square one but being proactive with trying new health strategies with your specialist or GP will help you mix and match what works for you. when you go through a period where nothing feels like it's working, then it's always helpful to talk to someone about it.

And be careful what sources of info or support you look for online - there's so many communities for specific chronic illnesses that are full of misinformation (instagram and tiktok especially) and are just influencers disguised as experts looking to make money off you with tips that are NOT backed by science.

[genderqueerdykes]

do i need a medical diagnosis to call myself intersex? my hormones are funky but idk if it's intersex especially since everyone on one side of my family is similar

you do not need one, as most people do not receive a concrete diagnosis other than "your hormones are fucked up. here's some birth control pills," or "you have low T. let's fix that"

my doctors never really diagnosed me with anything on my heath chart despite telling me i had a few issues. i never saw those health problems reflected anywhere else in any of my other doctor's health charts. they just kinda offhandedly mentioned pcos and hyperandrogenism, dont look forward to having kids because of infertility, something something i didn't understand, here's some birth control...

while i can't tell you if you're intersex or not, my best advice is to try to reach out to a doctor, obgyn, or endocrinologist who can help you take a look at your hormone levels, and see if there is something going on. if your hormones are consistently outside of the "normal range," then you could have an intersex condition. also i wouldn't dismiss it necessarily if everyone in your family is similar because these conditions can be and in fact are genetic for most people-

my cis sister started balding in her 20s because of super high T and low E. she deals with facial hair as well. my aunts, and grandmother also dealt with this, as well as very sharp and dense facial features, facial hair, (my grandma had a square jaw), strong dense upper body muscles, messed up menstrual cycles, etc. generally speaking High T bodies. i believe they all probably had something similar if not the same intersex condition, or at the very least, laid the groundwork for my intersex condition. genetics play a huge role so it's also a good idea to get genetic tests if your insurance will cover those. they can tell you a lot

your best bet is to attempt to see if you can speak to some professionals who can help you figure out what your hormone levels are like, if it's affecting any other part of your endocrine system, get some genetic testing done if possible and so forth. if you can't, i would say do as much research as you can into the intersex community and our experiences and make an informed decision after you've heard from pretty broad range of sources. take care, good luck, it takes a while but it's worth looking into, it can explain a lot

[shepfax]

so after a bit more research, I've become more comfortable considering myself part of the intersex community. it brings me such joy that there are so many terms for me--transgender, transsexual, transmasculine, FtM, genderqueer, non-binary, androgyne, and now intersex.

it felt odd at first, chiefly because of all these misconceptions I harbored about the nature of intersex conditions and the finer details of the sex spectrum. I never doubted the fact that sex, like gender, is not an immutable binary, but I didn't understand the extent to which my own body resided between those imaginary lines. for example, as far as I know, I didn't have genital ambiguity at birth, and I've always been under the impression that that ambiguity or atypical presentation at birth is the definition of being intersex, so obviously someone like me couldn't be intersex. thankfully I know better now, that there are tons of ways intersex traits can manifest, many of which only begin to present at puberty such as mine. at this point I don't know if I have any chromosomal differences, but I do know my body is measurably different than the norm beyond just my hormones. the late onset of this awareness also means I need to be extra forceful in my activism for bodily autonomy, seeing as intersex genital mutilation is not only practiced, but encouraged, in far too many places. the intersex community has made strides for everyone in the realm of medical and social bodily autonomy only to be cast aside as a rounding error or tokenized as a gotcha against bioessentialism.

this matters to me doubly so because at this point in my life I've medically transitioned away from my sex assigned at birth and, due to my queer path to self-determination, chose to legally change my sex marker to X, not M. I am not male or female in body, but rather a cocktail of the two, so it seemed right to have my legal status reflect that. (and yes I still use the term FtM for myself just because honestly, for all intents and purposes, it suits me. it describes the medical practices I undertook to transition and attaches me to a rich, historic community of my fellow FtMs, trans men, tboys, etc. feels comfy, feels like a vintage sweater.) even before I knew I was working with a specifically intersex condition, I joked a lot that my condition gave me a head-start on masculinization. my changes on T happened pretty damn fast and were far more akin to those of cis dyadic men in my family than those of many dyadic trans men in my life. because of this difference in baseline, I really can't wait to connect with other intersex trans and nonbinary people. if one with intersex traits such as myself undergoes medical transition, there's a baseline of hormonal and sexual nonconformity to our bodies that automatically produces a "transition timeline" which differs from those of a dyadic trans person's timeline at just about every step of the way.

about 8 years ago, at my first meeting with an endocrinologist to do baseline blood work before prescribing testosterone, in starting a physical exam he gave me a once-over and said "have you been tested for PCOS?" because apparently it was obvious to everyone but me that I had hyperandrogenism. blood work confirmed it, and I smiled as I started my transition with naturally elevated testosterone for an AFAB individual. my "starting point" looked like some people's 2 months or 6 months or 2 years on testosterone.

it's just that I've been living without that sense of community through not just my whole life but my whole transition. I love and thrive within the trans community, but that difference in baseline always added a gap in understanding, particularly surrounding what shape one should exist in as they are pre- or post-transition and the nature of "passing". so it feels odd to step into it now even though it's always been part of me... basically I'm still feeling weird. nervous weird, but also buzzing-with-excitement weird at the chance to finally find community with people both like and unlike myself.

tl;dr hello intersex community. sorry I'm late, no one told me I was invited I just thought I was a freak. I really like LGBTQ+ nonfiction so if any of you have book recommendations about intersex community history or issues I would be so very happy to hear them

[doberbutts]

I had a bit of a question about your T journey if you don’t mind sharing about it.

I started T a little over a month ago and I’ve been astounded by the immediate changes because I’ve already started filling in real terminal facial hair instead of just peach fuzz, growing an adams apple, and getting some fat redistribution on the hips which has been super awesome, but has been leading me to wonder about the possibility of being intersex or having hormonal weirdness going on underneath the surface since it’s been so quick.

How did you go about talking to your doc about that/testing? Im not sure how to really broach the conversation

Well, some people do just get changes really fast, so I wouldn't discount that as a possibility. Especially if you weren't particularly virilized prior to HRT, you might just have gotten lucky! I already had many of these things even prior to HRT, to the point where multiple friends of mine trans and cis thought I started T the moment I stopped shaving my face, when the reality was that I just... stopped shaving my face and allowed the hair that was already there to regrow... and it continued to surprise people every time I told them no, I have not yet started HRT.

Like I had someone mad in my notes because she thought I'd already fully transitioned medically as a teenager and was incredibly jealous and bitter that she was in her early 20s and still couldn't access medical transition. Which is an unfortunate situation to be in but A: not really my fault and B: interesting assumption considering I started taking testosterone two months shy of my 30th birthday (meaning after that conversation, and I've now been on T just shy of 5 months) and still have my factory-installed parts.

So honestly I can say if you're not running into this sort of situation, it is very possible that you just got lucky with your timeline and that you are not intersex. I have known something was off about my hormone levels since I was a little kid, I just wasn't told the full information and my diagnosis was deliberately kept from me. I didn't go into this thinking that I was perisex, I've been trying to get answers regarding my intersex status for the past 5 years and it was just 5 months ago that I finally got the truth.

That said, if you are interested in a definitive answer, I would get a referral for an endocrinologist and tell them your symptoms and see if they find anything interesting. It is still possible to be intersex and not have any virilization, it just depends what type of intersex. A friend of mine spent most of their life thinking they were a perisex cis woman only to discover during completely unrelated abdominal surgery that they had a testicle in place of an ovary, making them intersex. They now also identify as nonbinary, after taking several years to come to terms with what that means for them, as they were a radfem for a spell and even after getting better still held some preconceptions. Again, there were signs that something was up, they at one point bled for over a year and then didn't bleed again for 5 months, and then started bleeding off/on every two weeks. But they weren't virilized, so they'd assumed it was something like PCOS [which can be considered intersex if virilization is occurring, but wasn't really at the time] or endometriosis [which is not intersex].

[chrismerle]

I used to fairly regularly go through 120 units of insulin in a day, my numbers constantly felt out of control, and I was fighting tooth and nail to keep my A1C at around 7.2 because I didn't want to be the "bad diabetic" the pedes clinic was always telling ghost stories about. (it was to the point that I was reacting to a 150 the same way I reacted to a 450. the first panic attack I remember having was because I got back from class in college, checked my blood, and it was at like 165, and I was so fucking tired of it never being good enough. also i spiked my insulin pump at the floor like a volley ball but shhhhh i didn't tell the doctor that.)

one endocrinologist I had, who I'd been seeing for years, was basically like 'that's not ideal, you should workshop that,' as if she was entirely unaware that helping me do that was her fucking job and I never saw her again. I transferred my paperwork to a new clinic that week and saw my new endocrinologist a couple months later.

the new endocrinologist told me, in our first meeting, 'oh, that sounds like insulin resistance, that's common with PCOS' and put me on meds to do something about it.

metformin didn't really work out; I was basically guaranteed to get violently ill twice a day with little warning, so I couldn't leave the house or risk getting that sick in public, and the only way to slightly mitigate that was if I ate so much it made be genuinely physically uncomfortable, all while I saw no improvement in my numbers. trulicity, however, started working in literally half an hour, and while it does have side effects, I more or less felt back to normal after the first couple of weeks.

and I was scrolling through the daily totals in my insulin pump. throughout the entirety of february, I had four days where I went over 100 units. as of January, my A1C is at 5.7; if it goes down another tenth I won't even be in the pre-diabetes range, and that's with type-1. and sometimes I think about it and I sort of want to start crying.

[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)

[intersex-support]

Hi so. I'm in my mid 20s and having some health problems which led to me pursuing some questions I've had for a long time. Long story short I'm pretty sure I have nonclassical cah? It would explain a lot of things for me and I think my doctors may have hidden it, intentionally or not, under my other diagnoses? Most relevantly I have type 1 diabetes, pots, hypothyroidism, and pcos. My genitalia is also a bit outside of the female "normal." I always wrote it off as everyone's different, but it sure seems to match the diagrams of other intersex people online now that I've actually looked into it. I guess I'm just feeling really overwhelmed and I would love to know if you have any advice on what to do next? I already id as trans but this is definitely different and I have no idea where to go from here socially or medically. Thanks to anyone who can help. Sorry I'm too shy to come off anon right now...

Hi anon! Sorry for taking so long to answer.

I totally understand how overwhelming it can be to start wondering if you have an intersex variation, and the next steps can feel really confusing.

In terms of looking for a medical diagnosis, the first step would probably be to either go to your primary care doctor, or if you already have an endocrinologist because of diabetes that might be easier, and explain what you're thinking. The first step is usually a complete medical history and a full hormone panel, especially looking at total testosterone and estrogen levels. You might already have some of those test results in your records. If your testosterone levels are high, that might be a sign to start doing some more CAH-specific tests. The first test is probably your 17 OHP levels, which they like to check in the morning. Next, they might do an ACTH stimulation test, where they inject you with synthetic ACTH and see how your 17 OHP levels and testosterone levels respond. There is also genetic testing for CAH, but a diagnosis can be made just on blood tests alone.

In terms of socially, know that you're totally not alone and that it's okay to feel overwhelmed. It might be helpful to start researching more about intersex topics and getting more of an understanding about what all of this means. Here's a post with links to a ton of different articles, videos, and other resources. It's okay to take it slow and let yourself process. A lot of intersex people are totally welcoming to answering questions and offering support to people in the diagnosis process, so feel free to check out the resources listed on this blog to find places to connect.

Truly wishing you the best of luck, anon!

[ofthoughtsandmemories]

man. I'm not sure if keeping this blog alive is a good thing, but right now I don't see the harm in posting.

My life fell apart. It sounds dramatic when I type it out, but I can't deny that it's true. I am only a few assignments away from getting my Masters, but that's on hold for... well, I don't know. As long as it takes to get better, I guess.

At first, I didn't know what was wrong with me. I spiraled and spiraled. I was certain I wouldn't survive. And I wouldn't have if I didn't have such wonderful friends and a medical support system.

I spent several months digging my own grave and 3 months lying in it. That's what my therapist now says, and I can't help but agree with her. My dad came and saved me. I left Omaha behind for Appalachia. It was, and is, a bittersweet transition. More bitter than sweet, but it gets easier to swallow every day. I miss my friends in Omaha so much. They promised we'd keep in touch and that we could still be friends, but I have more experience in losing friends than they do, I think. Perhaps that's a pessimistic outlook, but I just can't help it. I know they still think of me. Moi talks to me frequently. I just miss them so much.

I thought I was sick. Everyone did. My parents and I struggled and struggled to be seen by doctors who would take me seriously. After the endocrinologist told me it was just PCOS, something inside of me changed. I don't know what it was or why, but ever since then, I feel like a different person.

I'm still not completely convinced that this new treatment is going to work, but I'm not really convinced of anything right now, so I guess that's fine. It has to be fine.

So after almost a year now of suffering and stagnation and pain, I've started to heal. I think. But this healing is starting with 10 years of repressed memories and trauma I didn't even know I had.

I am a CSA survivor. Typing it out still feels strange. How long did I carry that with me in my subconscious? I wish I knew. I wish I could remember. As scared as I am of remembering, it somehow seems worse to have it all tucked away somewhere, out of reach. I can't heal if I can't remember.

At the same time, the worst part so far has been remembering. I can't stop thinking about high school. I can't stop thinking about all of the ways that I hurt people. Realizing why I acted the way I did. Remembering all of the dysfunctional ways that I cried out for help.

This blog is one of them. I read through the entire thing some time a few weeks ago. It hurt me to see myself saying such horrible things. I was 13. She was 13. I picked up the burden of self hatred so, so young, and I didn't even know I still carried it with me.

I also don't know when I started believing that I deserved the abuse I got. The neglect. It's little wonder to me now that I struggled with adulthood. No one taught me. No one taught me how to live. I have spent my entire life believing that I am a burden, unwanted, never enough. My mother threatened to kill herself because of me many times. I want to say that I forgot it happened, but that's not true. Like the rest, it has been with me. I think I just accepted that I deserved it somewhere along the way. I don't think that anymore. I haven't thought that for a while.

Now, I just live. I heal. I'm frustrated and scared and sad and all kinds of things. I have so much work to do, and most of it is in my head. I'm grateful for my NH friends more than I can say. I'm grateful to Moi and the rest of my friends in Omaha. I'm grateful to all of the people I have known in my life who have helped me begin to love myself. People who I loved. Because I do love myself, even if I still hate myself. I love parts of me, and I will learn to love all of me.

There is nowhere else to go but forward.

[iksanawellness]

Acne, How To Break The Cycle

Pick ANY 1 symptom and start taking help ✨ Start MYOINOSITOL today ✨

1. Weight - Get a trainer / Join a gym / Start Youtube workouts and Get a Nutritionist 2. Acne - Talk to a dermatologist 3. PCOS - Talk to you Gynaecologist/ Dermatologist/ Endocrinologist 4. Stress - See a psychiatrist/ psychologist

👉🏻Why is GETTING HELP IMPORTANT?

Seeking professional help for weight gain, acne, stress, and PCOS is crucial because managing these issues alone can be overwhelming. A dermatologist can provide targeted treatment for your skin, while a trainer can help you effectively tackle weight gain and improve your fitness. Additionally, professionals offer structured support, breaking the cycle of inactivity and ensuring you don’t have to navigate these challenges by yourself, balancing your job, social life, and emotional stresses.

👉🏻 What if you DO NOT WANT HELP ?

Even then start working on one aspect and I would say TARGET YOUR HEALTH. Everything else will fall into place if you work on your health.

Breaking cycle seems tough but if you realise you only need to target ONE SYMPTOM and rest everything will be corrected 🌸

Visit Us At: https://iksanawellness.com/

[goodmorning-hello]

Okay no yeah had a very Weird time with the gender wizard today and i think i gotta get it off my chest

So first time meeting the endocrinologist, to discuss the intersection of PCOS diagnosis and possibly going on T, yeah? And the whole time i felt like i was talking to a wall, so. zero points on bedside manner. But that got me sort of on my heels and wondering if I'm just not articulating myself well enough to be understood right, or if she's not really listening, or what.

And like. She was asking a LOT of questions about my depression levels and specifically asked about thoughts of self harm / si, and like. Yeah?? I've been at that rodeo for AGES, that's not your business??? That's for unpacking with my therapist; i didnt come in prepped to air out that laundry today. Let's get to the topic at hand, no?

And she was asking about my social history and who I'm out to, which like. Yeah okay, i guess that's a sort of fair question, but also i sort of fail to see how it matters? 1) You don't know my family dynamic, you don't know whether being out to my family means DICK ALL. 2) If my friends peace out bc i tell them I'm a boygirl, then I'll be well rid of them and i will find new friends. 3) It's not my boss's business AT ALL whether I'm a lady or not on any given day, as long as i show up and do my job they shouldn't, and don't, give a shit.

And she kept iterating that going on T will cause some permanent changes, which. Yes, that's the idea. Why are you telling me this. I want those changes. That's what I'm asking for.

And ultimately she decided that she wouldn't advise it "based on my social situation"

Bitch i am a grown ass man??? I KNOW my social situation, and I'm capable of navigating the changes that this would entail. I understand that this is going to cause some permanent changes, that's why im here. I have thought about this. I wouldnt be here if this was a fleeting fancy. Do you know how long i waited for this appointment.

And now that I've been percolating on it I'm belatedly realizing that actually yeah, i am kinda mad. Not even bc i didn't get what i want, but just at like. What the HELL was going on in that appointment? Does she think i don't know my own situation and mind, and don't understand what I'm asking for????

And i was just so mentally wrung out from the day I'd already been having before she even walked in that i just sort of accepted it, like. Yeah sure, whatever lady. I'll call back in a month or two so we can have this exact same conversation again on a day when I'm ready to fight you for it, let me out of here so i can go eat something today.

[laughterbynight]

mother of god if I see one more…

birth control does not TREAT PCOS. It can help manage milder symptoms and if your body is particularly compatible with the hormones it can help with stronger aspects, but it does not TREAT IT. PCOS requires management of hormones beyond birth control. It’s a quick fix like a band aid that majority of health care providers will claim fixes the problem because it’s easy and most GPs and even many gynecologists aren’t super educated on PCOS. They know general things but you need a hormone specialist like an endocrinologist to get to the root of the issue, which often means hormone blockers or other medications that stabilize whatever is slightly off in your body. Birth control does not do that. Birth control is designed to give your body synthetic hormones hopefully causing your body to chill on overproducing its own which can help regulate your levels. For PCOS this is a gamble bc often the problem is your body converts extra hormones. Hell that’s not even exclusively a PCOS issue. Many women just get ill from hormonal birth control bc some bodies wont or can’t accept it. There’s a reason the warning label is massive. Hormonal Birth control isn’t made to cater to individual needs and that’s important to keep in mind with so many GPs and Gyns acting like a pill or IUD is going to fix your hormones. And as someone who has been through that bullshit gauntlet before an endo explained the reality to me, make sure you’re getting treatment that will ACTUALLY help. I nearly had to go to the hospital after my gyn kept pushing me to try various birth controls for PCOS when I should have been on something completely different. Even when I put my foot down over the pills they kept trying to pressure me into an IUD which is the same damn thing, just extra trauma and money on top. I really hate seeing birth control treated like a cure-all because it’s easy.