#cah intersex

[saltyfoxes-art]

Glaceon calls herself demigirl and has the intersex variation CAH. They consider themself to be cistrans due to her relationship with her AGAB, gender, and sex.

SHE/THEY

[thatneoncrisis]

day five of making you look at my butches: fun announcement

[tortiefrancis]

People talk about testosterone like it's "the evil hormone" but really I'm just very sweaty and hungry all the time

(this post is abt my hyperandrogenism)

[dhddmods]

Some intersex flags! (Part 2)

Part 2 of making flags for intersex traits and variations that were flagless! (Part one is here.) There will be a part 3 & 4 and then all the main intersex traits/variations will officially have flags.

Please read (and reblog) our intersex guide. It is so important to understand intersex people, their bodies, and their health!

Accessory Ovary

The flag is based on the uterus didelphys and polyorchidism flags. The A is meant to represent the name of this variation. The three circles are meant to represent ovaries. The plus symbol is meant to stand for people who have more than one accessory ovary (aka 3+ ovaries.)

Supernummary Ovary

The flag is based on the uterus didelphys and polyorchidism flags. The S is meant to represent the name of this variation. The three circles are meant to represent ovaries. The plus symbol is meant to stand for people who have more than one accessory ovary (aka 3+ ovaries.)

Cervical Duplication

The flag is based on the uterus didelphys flag. In the center of the flag, the shape is meant to vaguely resemble a uterus with two cervixes.

Cervical Duplication + Uterus Didelphys

The flag is based on the uterus didelphys flag, with the shapes being changed to vaguely resemble two uteruses with cervixes.

Cervical Agenesis

The flag is based on the MKRH Syndrome flag. The symbol is meant to represent a uterus with an X over where the cervix would be.

Cervical Hypoplasia

The flag is based on MKRH Syndrome flag. The symbol is meant to represent a uterus with a minus symbol over where the cervix would be, representing its smaller size.

Uterine Hypoplasia

The flag is based on MKRH Syndrome flag, with a minus with a minus symbol, representing its smaller size.

Anorchia

The flag is based on the ovarian agenesis flag. The circle with the X represents a lack of gonads.

Monorchidism

The flag is based on the ovarian agenesis flag. The circle in the symbol represents the testicle itself. The 1 represents how there is only one gonad, and the M represents the name of this variation.

Unilateral Ovarian Agenesis

The flag is based on the ovarian agenesis flag. The circle in the symbol represents the ovary itself. The 1 represents how there is only one gonad, and the U represents the name of this variation.

Aromatase Excess Syndrome (AEXS/AES)

The flag uses the hyperestrogenism symbol, as it is a form of hyperstrogenism. The shades of pink represent the feminizing effects of the variation. The rainbow and monochrome coloring represents the gender spectrum, and how any gender can have this variation.

Classic CAH (Simple-Virilizing)

The flag is based on the CAH flag. The SV represents the name of this variation.

Classic CAH (Salt-Wasting)

The flag is based on the CAH flag. The SW represents the name of this variation.

Nonclassic CAH

The flag is based on the CAH flag. The NC represents the name of this variation.

Leydig Cell Hypoplasia (LCH)

The shades of blue represent the masculinizing effects of testosterone. The grey represents hypoandrogenism, and low levels of androgens. The grey circle represents the testes, and the underdeveloped/absent leydig cells within them.

17-KSR Deficiency

The purple and yellow represents that this variation is a form of intersex. The shades of grey surrounding the blue represents the "barrier" preventing androstenedione from converting into testosterone. The Ks and 17 represents the name of this variation.

Aromatase Deficiency

The purple and yellow represents that this variation is a form of intersex. The shades of blue represents the hyperandrogenism, and the pink surrounded by grey represents hypoestrogenism. The AD represents the name of this variation.

Mild Androgen Insensitivity Syndrome (MAIS)

The flag is based on the AIS flag. The M represents the name of this variation.

Partial Androgen Insensitivity Syndrome (PAIS)

The flag is based on the AIS flag. The Ps represents the name of this variation.

Complete Androgen Insensitivity Syndrome (CAIS)

The flag is based on the AIS flag. The Cs represents the name of this variation.

[oddverse]

Prosciutto looks like that because he mixed t with estrogen and got the secret third option

[intersex-support]

hi! im questioning if im intersex (sorta. im like. 98% sure i am lol) but i cant quite find any variations that fit perfectly, though i know that you dont necessarily have to fit Every criteria for a variation. but i also might have EDS, or rather. probably absolutely do, but i missed One criteria in the hEDS diagnostic thing (my skin isnt Super elastic, just a little, but otherwise i am hypermobile) and wasnt diagnosed w hEDS specifically. i also wasnt able to get in with a geneticist to confirm EDS that way (i was pointed in their direction right when covid started so they werent accepting new patients)

anyways my point is, ive heard of CAH X, i think was the name? and from what i could tell its kind of a mix of CAH and EDS symptoms? but i couldnt find anything about it that wasnt super medical so i couldnt really understand it. is it possible you have some information on it? if not thats fine! ty for your time!

Hi anon!

Disclaimer that we cannot diagnose or provider medical advice, but I can absolutely share some information about CAH X.

So, CAH X is a subset of CAH where people have both CAH and Ehlers Danlos Syndrome. Research has only been done on patients with the most common type of CAH, 21-hydroxylase deficiency, and there isn't any info yet about the other rarer CAH subtypes.

CAH X is caused because the gene mutation that causes CAH is located next to another gene that can cause some kinds of EDS. The gene that causes CAH is called CYP21A2. Right next to CYP21A2 is a gene called TNXB, which encodes a protein called Tenascin-X (TNX). Severe TNXB mutations can cause a subtype of EDS called classical-like EDS, and milder mutations can cause hypermobile EDS. So in about 14-15% of people with CAH, there is essentially an overlapping mutation where the genes that cause CAH and the genes that can cause some types of EDS are both mutating at the same time and causing both diagnoses.

In the studies they've done about CAH X, they've found a range of symptoms and clinical presentations, both in terms of CAH and in EDS. There were patients in the study that had NCAH, CAH simple virilizing, and CAH salt wasting. Patients in the study ranged from having hEDS and just having joint hypermobility and joint dislocations, to having cardiac valve problems, gastrointestinal problems, to having clEDS. Most of the studies so far have found that almost all CAH X patients have elastic skin.

In the study, they found that having both CAH and EDS tended to make the impact of EDS worse. They found this out by comparing the people with CAH X compared to their relatives who just had EDS without CAH.

The discovery of CAH X is still very recent, so there's not a ton of research on it yet. I think they're going to keep finding more out about CAH X over the next several years, and keep refining the genetic testing and clinical diagnosis profiles for it.

So overall, CAH X is a subset of CAH where people have both CAH and EDS, and the symptoms of both diagnoses. Here's links to two research papers if people want to read to learn more!

[hiiragi7]

Wondering why PCOS is not considered medically to be under the CAH umbrella (since CAH is a group of conditions involving hyperandrogenism), does anyone happen to know the reason?

Is it the vagueness regarding the cause of PCOS, is it the amount of misunderstanding and misinformation surrounding PCOS, is it intersexism and misogyny? Or even a combination of these?

Looking at the literature, PCOS is indistinguishable from CAH without extensive bloodwork, and often CAH is misdiagnosed as PCOS due to less widespread knowledge of not only CAH's existence (despite it being extremely common) but also due to doctors rarely ever testing for anything that is not 21-OHD, if they decide to run tests at all. (Many PCOS patients are diagnosed without any tests or with only an ultrasound to check for ovarian cysts, which is not actually useful as any kind of evidence towards a PCOS diagnosis at all)

In fact, 3bHSD CAH at one point was even considered to be a type of PCOS rather than CAH. If the two are so similar, and CAH is already an umbrella term, why the distinction between PCOS and CAH at all?

If it's due to treatment implications, that doesn't seem to work because treatment implications are different even within different variations within the CAH umbrella and even further within the same CAH variation. My treatment needs and goals are different from someone with another CAH enzyme deficiency, because the location of the deficiency on the steroid pathway changes a lot about what your symptoms are and how to manage it. Someone with 3bHSD CAH may build up pregnenolone, while someone with 21-OHD CAH may build up progesterone, for example, and these can cause very different outcomes for physical health and needs. There's also vastly different implications between classic, non-classic, and salt-wasters.

Us all being lumped under CAH has never stopped us from accessing the different treatment we need for whichever variation we have. Being grouped under an umbrella label does not mean we are all suddenly the exact same and have the same needs. This is true across all umbrella diagnoses and across spectrum disorders, and CAH is not any different.

A person with XY chromosomes and 3bHSD CAH may have ambiguous genitalia while a person with XX chromosomes and 3bHSD CAH may have completely "typical-appearing" or only slightly virilized genitals, some people with CAH may be infertile while others have no issues with fertility, some have ovarian cysts and some do not, some will go through "typical" puberty and others will have ambiguous or "opposite-sex" puberty, so on.

What vast amount of differences are there between PCOS and CAH that are not present between 21-OHD and 3bHSD, 11-beta, and StAR? PCOS and NCAH can even be more alike to each other than CAH variations can be to other CAH variations.

When we have studies which struggle to differentiate PCOS from CAH even on a biochemical level, why are we so confident in saying that PCOS is not yet another CAH presentation, or that it does not belong underneath that umbrella?

TERFs don't touch this post, I don't want to hear your shit today.

[battry-acid]

logan is trans and intersex to me. when i draw logan he is trans and intersex. he is also bisexual (staying true to canon in that regard) and polyamorous. thank u for ur time

[weirdstrangeandawful]

TW: medical gaslighting(?)

This is a total long shot but does anyone know if (N)CAH can be diagnosed if my body no longer has the ability to produce sex hormones as a result of (voluntary) medical intervention for unrelated issues?

I'm trying to get diagnoses or at least treatment for some of my other disabilities and symptoms but many times I'll explain that a symptom has been going on for a while and they'll blame it on possible CAH and say that I should have thought that before I got the other medical intervention (that was absolutely necessary and needed to be done as soon as possible for quality of life reasons). They'll do this even if I'm pretty sure it's EDS-related and not possible-CAH-related

It feels like an easy way out of actually treating me by saying 'oh well you should have thought of that earlier. Nothing we can do if we can't rule out CAH'

I've been fully dropped from my endocrinologist's patient list so I need a pretty convincing argument to get a new referral to a new endocrinologist. Is there any way this can get diagnosed without my body producing sex hormones? Even if it's just to make sense of historical symptoms that have persisted ro caused long-term damage.

[neopronouns]

image id: square images of each flag listed below with large, all-caps white text outlined in black that says ‘pride is for me’ over them. end id.

banner id: a 1500x150 teal banner with the words ‘please read my dni before interacting’ in large white text in the center. end id.

intergender | teingender | internon wæpnwifestre | intersex | intercenic pcos | anisohormonal | cah

'pride is for me' edits for anon! (intersex edit is also featured in this post of mine)

dni link

[trans-axolotl]

do you know anything about late-onset congenital adrenal hyperplasia? i just found it on my file while looking for something else. i have an unrelated surgery coming up and i'm trying to figure out if this could have any effect on how my body handles that, especially wrt cortisol. but i can't find much on it at all, particularly how it affects ppl beyond infertility and sex characteristics. my impression is that at least the classic variant of it sounds like something intersex-related so i thought you might have heard of it. i remember asking my doctors for more information and they were basically like "don't worry about it unless you wanna get pregnant :)"

Hey anon.

So, late onset congenital adrenal hyperplasia, also called nonclassic congenital adrenal hyperplasia, is considered an intersex variation. (If you search NCAH on my blog or on @intersex-support, you might find some other posts about it). Because of the way it affects our testosterone levels and secondary sex characteristics outside of what is typically considered "female", late onset CAH is intersex, even if late onset CAH hasn't caused changes in genitalia.

Of course, there's no pressure to instantly start referring to yourself as intersex, or start participating in intersex community, but know that you are welcome here, and there are a lot of people who understand what it's like. I also have CAH, and I'm always happy to talk about it with anyone else. I know that it can be sort of shocking or overwhelming to get that information for the first time. Any feelings you have about it are completely valid. You can take as much time as you need to process. The community is here for you whenever you're ready.

In terms of surgery and CAH, there are some important considerations. For people with NCAH, there's going to be a range for how each individual makes and processes cortisol and aldosterone. Some people need daily glucocorticoid replacement therapy while others do not. However, even if you do not need daily steroid replacement, some people with NCAH need extra "stress dosing" of glucocorticoids when their body is under physical stress, such as during illness, injury, or surgery. It would be really important to talk to your surgeon, an anesthesiologist, and probably an endocrinologist before the surgery to make sure you know what your cortisol and aldosterone production is and make a plan if you need stress dosing during surgery or surgery recovery.

One book I would recommend for people with CAH is the Parent's Guide to CAH. In a lot of ways this book kind of sucks--it's directed towards parents, uses a lot of cissexist language, and uses a very medicalized model, but has some of the clearest nonacademic writing about what CAH is, how it works, treatment options, and talks about different considerations like surgery, illness, etc.

Please feel free to reach back out with any other questions, whether it's about CAH, intersex stuff, or if you want suggestions on any other resources. Thinking of you, anon, and hope your surgery goes well! 💜💛💜

[heartshapedgreen]

re: last rb, i have so much to say about the demonization of androgens & the way hyperandrogenism intersexies are kind of regurgitating that by taking their diagnosis and biased researches for granted. dyadist research will usually mention androgen excess and estrogen excess in isolation from the other hormone, nothing about progesterone or estrone, or the fact we all have these hormones working together in different ways, we all have a menstrual cycle (yes, even those who don't bleed - that's just one symptom of a period - and the "male cycle" which centers testosterone cycling every 24 hours is bs cause everyone's testosterone - usually - does that) AND your menstrual cycle is as unique to you as your fingerprint. that's why we all look so different.

like i grew up with high levels of androgens, had a precocious puberty & i'm now going thro puberty no. 2. i suspect high levels of estrogen (relative to my progesterone, everyone forgets her) with androgens prolly decreasing because My God The Pain™️ (& i have very high pain tolerance). i recently developed incontinence issues and really bad pelvic floor dysfunction with chronic pelvic pain. testosterone deficiency leads to chronic pain btw & testosterone is known to help with cfs and fibro. personally increasing my probiotics & fiber has helped immensely (you poop out excess estrogen, and i have ibs-c LOL).

having dealt with dysfunction with both the 'mones, i have to say i much prefer my baby days of growing body hair at 7y/o rather than severe pelvic pain where i can't move and have to do postnatal physiotherapy for it. & knowing i'm just going to get worse and worse with age. my fertile family members would pop out babies every year to stop the symptoms of hyperestrogenism btw. what financial insecurity and no medicalcare does to a bitch.

anyways. what they don't tell you is that androgens and estrogens are both pro inflammatory & anti inflammatory + they work in tandem, and estrogen dominance can be a Bitch. & the virilization that comes with, for ex, PCOS? that's from androgen secreted from the ovarian cysts (which can secrete estrogen too & that's also not good). the androgen excess is a consequence, not a cause. acne, hirsutism, menstruation irregularities are consequences of the inflammatory processes.

and those cysts? most likely caused from various dysfunctions in the body. i'm not a doc (thank god), but something something metabolic dysfunction something. the thing about androgen (and estrogen) being pro iflammation? it becomes a feedback loop of inflammation > high levels of androgen/estrogen secreted > More inflammation. working on the root cause, decreasing inflammation (whatever this means for you) is more likely to help than the way fatphobic and interphobic docs will tell you to lose weight or reduce your testosterone. you also need your testosterone. hirsutism is not the be all end all.

[battyhillel]

so not only did i possibly go thru igm, but i may actually have cah like i thought and it was hid from me.

great. (sarcasm)

[darkjusticiar]

Found an old watercolor painting I did as a "self portrait" for art class in high school that was supposed to be symbolic. Apparently I drew a figure in a pink dress actively turning into a beast, like, clutching their wolf head. This is so transgender it's not even funny

[intersexfairy]

Hey, so, I'm a likely intersex person who's looking into CAH or more specifically non classic CAH now. I did hormone testing a while back, suspecting, I had high androgens, but those came back normal. However, I did get high progesterone and prolactin twice. I'm not pregnant, and this was done in the same point in my menstrual cycle, but in a point in it where my progesterone should be low.

On the second test, i got.. 17- something progesterone (I really can't remember the name) high, and after doing some research into higher progesterone levels, I found out CAH can cause a higher level of that specific hormone. My doctor only told me I had high progesterone and was very nonchalant about it, so I had no clue it was like that.

I did an exam on my abdomen to check my adrenal glands but it seems it only checked how all the organs looked, so nothing about function as far as I know. Besides that, I did no further testing and now I'm super confused.

I have NCAH symptoms but I don't know if there's any further testing I can do to confirm this- before you mention, I don't have PCOS, which I know is often a NCAH misdiagnosis, but I do have endometriosis.

I think your concerns are founded, 17-OH progesterone elevation is linked to CAH (specifically CAH due to 21-hydroxylase deficiency, the most common type). I believe there is a test that can be ran in regard to ACTH that can also help point in the direction to it being CAH. There's also genetic testing for CAH, but there are multiple genes that can cause varying types of CAH, so if you do that, make sure you get all of them done.

Also it is possible to have hyperandrogenism while having an androgen test come back normal - hormones fluctuate, sometimes greatly. Personally, when I had my free T and DHEA-S levels tested (for some reason, that's all they tested), my free T was normal but my DHEA-S was elevated. But a couple years prior, when I had more extensive hormone testing, my testosterone levels and another hormone I can't remember the name of (maybe progesterone) were elevated. I believe it is also possible to experience hyperandrogen-like symptoms due to differences in other hormones, but I could be wrong.

[neuroticboyfriend]

Are there any things you probably have but specifically don’t want to get checked by a doctor?

Probably Autism and BPD. I used to want them diagnosed, and I kinda still do, in part for validation (i know, that's wrong), and in part because I'm applying for SSI and such. But the ableism is... probably worse than it's worth. Although, at some point, I may not be able to avoid a BPD diagnosis, since multiple professionals have put it on their possibilities list before. I'd be surprised if I got diagnosed with Autism, since it's all been labeled Anxiety for so long.

There's also CAH, an intersex variation, which I would like diagnosed for my own health (especially since it's possible I have CAH X syndrome, basically CAH and hEDS together)... I may not be able to avoid that either, but I really don't want to deal with any more intersexism than I already have with a PCOS diagnosis. Hopefully if I have it, whatever doctor diagnoses me isn't an asshole.