#NCAH

[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)

[intersexfairy]

I’m tired of people saying pcos is intersex, just shut the fuck up dude, no one takes it seriously and no one will start if you are spreading fucking lies about it. Pcos can be caused by 4 things, adrenal glands, insulin resistance, hormone imbalance, or hereditary. You see a woman with a beard and you think they must be intersex. You’re a fucking disgrace and should be ashamed

I was gonna not post this to not spread negativity, until I realized you literally made the case for it being intersex in your own ask but are too intersexist to realize it. So now I just think it's really funny - if anyone shouldn't be taken seriously, it's you.

"Adrenal" "Hereditary" "Woman with a beard" ...Hey what medically recognized intersex variation (that's virutally indistinguable to PCOS in its nonclassic form by symptoms alone) does that sound like? Congenital adrenal hyperplasia, anyone?

Also InterAct Advocates, an intersex activist organization, recognizes PCOS as intersex so like. To any intersex people with PCOS reading this, you are intersex and there are so fucking many of us who know it. We see you and we accept you with open arms. And we'll be fighting alongside you to get to recognition and rights we all deserve!

[intersex-questions]

Hello! I know you're not a doctor and I hope this doesn't come as me trying to get a diagnosis, but I've been questioning if I may have NCAH but also afraid of just being overthinking it so I'm just... Looking for some guidance?

Basically, my puberty was really off. I developed body hair and odor really early (5 years old), got my period early as well (one day after turning 10) grew really early and fast (5'3" by 10, stopped growing at 12 with 5'7")

I remember having to go to the doctor frequently because of this. I almost had to puberty blockers, went through ultrasounds to see if my uterus was developing properly, etc.

So in terms of puberty I fit 100% into NCAH symptoms, but then afterwards not so much?

Only signs of hyperandrogenism I have is extra body hair (legs, thighs and lower abdomen but not facial), acne and very oily skin/hair. My periods were regular and painless my whole life.

So I feel in a sort of limbo between "you're overthinking out of nothing and co-opting intersex issues!" and "actually a lot of stuff that happened to you was wacky, go to the doctor!" and I'm just like... Wanting some guidance on which side I should listen to. If like, this is anything that I should actually look into/go to the doctor for or not really.

Thanks for the help!

Thank you for sending in your question.

Not everyone with NCAH is going to experience hyperandrogenism and that is just one of the symptoms it may have. With many medical conditions, there are a wide range of symptoms one CAN have and no two experiences are going to be exactly alike. And not everyone experiences hyperandrogenism in the same way as everyone's bodies process testosterone differently.

Regardless of what your specific diagnosis or variation could be, all of your experiences are something I and many others would see as inherently intersex (your early puberty, early growth, medical experiences to check on proper sex characteristic development, nearly going on puberty blockers).

You are not co-opting intersex issues whatsoever. Your experiences do fall out of the expected perisex experiences. I encourage you to use the intersex identity if it is something you wish to.

I do think this is something you should look into more IF you want to. You do not need to if you don't want to (unless it is something that could be causing health concerns, and even then, that is your personal choice). But you do not ever need a proper diagnosis or anything to be intersex, especially since the medical field is inherently intersexist and many doctors are individually intersexist.

Your symptoms definitely remind of NCAH and you can also look into precocious puberty.

I hope this helped you at least a little and let me know if you have further questions!

[intersex-support]

We have around 7 very similar asks in the inbox right now from people describing their symptoms and asking to get pointed toward some possible diagnoses. For the sake of not spamming the blog, I'm just going to make one post talking about NCAH and PCOS. Usual disclaimer that I am not a medical professional and can't diagnose you, but can give some basic information for you to investigate more.

NCAH and PCOS symptoms can include:

Irregular period cycles, Missing periods / Anovulatory cycles, early or late first period

Hirsutism (more facial and body hair than typical)

Male pattern baldness

Acne

deeper voice

Hyperandrogenism (High testosterone)

Clitoromegaly

Possible symptoms that are usually just NCAH:

growing pubic hair early at 8 or 9

Tall as a child but short as an adult

To be diagnosed with NCAH, your doctor will likely test 17-OH progesterone, Androstenedione, Testosterone, and do an ACTH Stimulation Test. They also might diagnose based on family history. You do not need to have all the symptoms to get diagnosed with NCAH--everyone will have a different experience. To be diagnosed with PCOS, your doctor will likely do a physical, do a blood test of testosterone levels, and might do a transvaginal ultrasound to check for polycystic ovaries. To be diagnosed with PCOS, you need to rule out other causes and then meet two of these three criteria: hyperandrogenism, ovulatory dysfunction (Irregular periods) and polycystic ovaries.

Both NCAH and PCOS have hyperandrogenism, but the root causes are completely different. This means there are slightly different treatment options for some aspects associated with the diagnoses, and some different complications and comorbid diagnoses associated with each one.

NCAH is recognized as an intersex variation. PCOS is a little more complicated, but many organizations and intersex community spaces welcome people with PCOS to identify as intersex. This video explains more. On this blog we absolutely welcome and include people with PCOS as intersex, although it's ultimately up to the individual to choose whatever labels feel best for them.

Sources: x, x

[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! 💜💛💜

[neuroticboyfriend]

why isn't TNXB here ):<

like... do you think if these don't come up with anything i should ask my pain management doc to order it? cause i have symptoms of both CAH and hEDS, which might mean CAH-X syndrome - mutations of the TNXB and CYP21A genes, since there's crossover between them... or they're close at the least.

[solarpoweredbirds]

OK SO here's that separate post i was talking about in the tags of my last rb

i recently learned* you can have completely normal levels of total testosterone but high levels of "free" testosterone (testosterone that your body can use). your body has sex hormone binding globules (sbhg's) which bind to, well, sex hormones, and prevent them from working to regulate the levels of sex hormones more accurately. if those levels are low for whatever reason, it means that more of the testosterone in your body is available for use. while i'm sure that's not the only potential cause, my point is that you VERY MUCH can have "normal" levels of testosterone (if we ever figure out what those are) and have "hyperandrogenism" (loaded term because hirsutism is usually the main symptom and has a...pretty racist history but you get the point).

as a note on that though, low shbg levels can often be associated with congenital adrenal hyperplasia, which can cause health issues beyond just hyperandrogenism. so if you have hyperandroginism caused by that, it's worth looking into other issues you may have possibly being related!

tl;dr there are LOTS of reasons for "hyperandroginism", and yes, sometimes (probably more frequently than the medical system wants to admit) it just Happens due to natural variations! but also, in some cases it can be associated with other issues. so if you have issues that you have yet to find any reasonable explanation for and symptoms of high testosterone, it's worth looking into hormonal imbalances/related conditions because sex hormones DO interact with other hormones and body processes and that's important to keep in mind!

*by "recently learned" i mean i was going through old bloodwork and found out that this was the case for me pre-t because my doctor just said "yeah your testosterone is highish" and didn't elaborate. qed, it can be very beneficial to learn to read your own bloodwork (i know at least for usamericans, quest diagnostics lets you access your bloodwork online and has short descriptions of each test's meaning, but you can easily find more detailed ones online!)

[hiiragi7]

In the most ironic twist possible, it seems we actually have classic CAH, not nonclassic.

[crazyalien87]

is NCAH intersex?

[tortiefrancis]

im getting more and more sure that I have NCAH but I'm too scared to ask for further testing and I don't think my gynecologist would support me on that

[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.

[intersex-questions]

I brought this up to another intersex blog a while ago and ended up just letting it go but due to repeated issues I've been thinking about it again. This will be kinda long, sorry.

I went to a real gynecologist for the first time after a traumatising experience with one when I was 10 (they did a swab test that hurt so badly they had to hold me down for it even tho my sister had it done too and it wasn't bad for her, I was told I was just very sensitive compared to her, I can't tell if this might be important or not so I'll include it just in case)

I'm 19 and AFAB, I've always struggled with periods, they happen twice a month and are 9-12 days long each. The only time they're easier is when I am on birth control, which still make them last 9-12 days but make them only once a month. I got on birth control a few years ago but stopped because of issues with my family not letting me take it. Now I went to this gynecologist and all we did was discuss putting me on birth control. She didn't look at my body or ask any questions about it besides about my period and how it was affected last time I went on birth control. Then she prescribed me birth control and set up an appointment to check in a few months later.

Before the next appointment, my mother's friends were talking about how my mom decided I was female when I was born. I asked what they meant and they said the doctor wasn't sure of my gender when I was born so my mom decided it. I talked to my mother and she told me she doesn't remember the doctors saying I was female when I was born, she says she doesn't remember what I was born as. My uncle, who was there like her friends were, also says he doesn't remember if I was actually born female, just that it took a very long time for them to figure it out.

I mentioned this at the appointment and that I was concerned I might be intersex (I have many other reasons to think this, not just them not knowing. I've always dealt with being way more manly and having more hair than the rest of the women in my family, my genitalia is bigger than it's supposed to be - I did check that to make sure as I felt weird saying it without knowing it for a fact -, puberty was hell because of the pain and change in hair and body odor and periods, etc.) and I asked if there was any way she could help me in figuring it out. She flat out told me that I'm not intersex and she would know if I was just by looking at me.

Part of me is very upset that she refused to even check, but the other part thinks maybe I should just accept it and she's right because she's a professional. I'm not a professional and the only thing I know is my body, everything could just be a coincidence. Any help on this? Do professionals often refuse this stuff? What should I do?

And I'm fully willing to accept if I'm wrong here, I'm just confused on a lot of things abs need some help figuring it out

Hey there, thank you so much for sharing this with me. I know that this all can be a really hard thing to talk about, especially after trying to talk about it with others and getting a bad response or no response. I recognize how brave this is of you and how scary of a thing sharing all this can be. I really appreciate you reaching out!

I'm responding to this ask completely out of order of your statements in which order I feel are most relevant to discuss first, so apologies if that is a bit confusing.

That was absolutely unprofessional and cruel of your gynecologist to do that. I'm so sorry that happened. You are completely valid to be upset. You do not have to just accept it nor do you have to accept her treatment of you. It is okay if you feel hurt by that experience. It was, objectively, intersexist, and regardless of that, a cruel thing to do to a patient. Medical professionals don't always know what's happening to us better than we do. The reason they are often able to help us is because we speak up and say, "Hey! I have this thing that's happening to my body, and I know my body and know this is different or not normal for it or the general population. I need help with it!" Professionals often do refuse that sort of thing, but that is because intersexism is incredibly common in the medical field to the point that I'm unfortunately willing to wager that an intersexist medical professional is more common than an intersex ally of a medical professional.

Your periods absolutely are considered irregular, although I'm glad birth control has been able to offer you help with them. I am unsure what it is like where you live, but are you sure you need to go to a gynecologist to be prescribed them? You may be able to go to a different medical professional or general care physician. I was on birth control (pills and depo shot) as a minor for help with my period and was prescribed it by my pediatrician. I've never been to a gynecologist before (although I do want to) and haven't needed to in order to be prescribed any form of birth control. You might be able to look into if it's possible for you to not go to the gyno in order to get birth control pills.

Pain at the gyno is different for everyone. Some people will experience immense pain, while others do not. However, a good gynecologist will do everything in their power to reduce or eliminate pain. It is, however, absolutely important that you were in pain at the gyno. They should NOT be holding you down in order to perform whatever they need to perform. They SHOULD offer ways to relieve pain. This article offers an insight into the problem of pain in the field of gynecology. This page talks about pain management for the gyno. And, it is an unfortunate truth, that some or many gynos simply will refuse to treat pain no matter what you say, and that finding other gynos isn't an option. Or that certain providers won't even offer pain relief for procedures. I'm not sure what to do in those situations, and I'm sorry if that's a situation you end up in. But you should try to stay strong and speak up. Don't let medical professionals belittle you or traumatize you into staying quiet when you're in pain.

Reading on what you were saying about it being difficult to assign your sex at birth...that's just like, wow. That is a very strong sign you're intersex! In my opinion, if one's sex is ambiguous enough at birth that it can't be easily determined or took a long time to determine, I think that the individual is definitely intersex. Like, let's say they decided you were male. Can you imagine how that would have impacted you, being raised as male and treated medically as male? Would they have done procedures to make you align more with being "male"? Since it took a long time to determine, you likely had (and possibly still have) ambiguous genitalia. This might sound silly, but have you taken the time to examine your genitalia? What is your (presumable) clitoris like? What does your entire vulva look like as a whole? What about the inner and outer labia?

Warning for illustrated images of genitalia

Upon examining yourself, do you feel like your genitalia start to lean away from the 6/7 area? (And even if they don't, that's okay, you could still be intersex, but ambiguous/different genitalia are a definite sign you are intersex.) (And also, I'd like to apologize greatly in advance if you are visually impaired. I am writing this as if you are not as most people on this blog are not and they might find help in your experiences later. If you are visually impaired, I will do my best to help how I can with visual traits of being intersex, but, as of writing this, I'm unsure how to describe or find ways to self-examine oneself for visual signs of being intersex while visually impaired. There's more information about the scale I posted here.) You might want to try to ask about your medical history and if you've ever had any treatments for things like your hormone levels or your genitalia.

Regardless of that, you're mentioning things that are signs of hyperandrogenism and/or hirsutism. It's possible you have those things, or both. You could look into things such as NCAH, PCOS, and hyperandrogenism in general. I have any posts about those and any asks about people who do have or show signs of those tagged on this blog.

Again, I'm really sorry that happened to you. No one deserves to be treated that way. It's really, really hard to, but please do your best to stay brave and strong. I know it is hurtful to go through, but don't let medical professionals, doctors, or anyone deny your experiences or refuse you treatment or things you may need. You deserve medical treatment and medical reassurance. You do not deserve to be treated that way. You do not have to accept things at face value or the word of a medical professional who is mistreating you. Don't let them win. The medical field as a whole is unfortunately inherently intersexist. Medical professionals will often refuse that sort of treatment, even though they shouldn't. However, the answers are within your own body. In some cases, being intersex is only really able to be determined through testing, and most types of intersex diagnosis can only be determined through said testing, but, in a case like yours, one is able to determine if they feel the intersex label/community is right for them based on what they know about their own body. I know it's hard, but please keep advocating for your medical treatment. You might have to see if you can find other doctors or medical professionals who will treat you. And, also unfortunately, you need to consider that, even if you were able to be determined as intersex by a medical professional, it isn't unlikely that they'll try to conceal it. I am truly sorry the world isn't a better place for medical treatments in the fields of intersexuality and general sexology and gynecology.

You are stronger and braver than you know. You deserve to feel empowered about your body, not belittled. I hope I answered all of your concerns, and let me know if I missed anything! You aren't wrong or in the wrong. You are perfectly okay for questioning this, and you are right to feel hurt by such things happening.

[intersex-support]

Hi, I'm in the process of getting tested for both PCOS and NCAH, so I think I likely am intersex but I just wanted to share part of my story if that's alright.

(cw- genital talk, sorry) I was born with an enlarged clitoris and a hypertrophic, partially fused labia. No surgeries were performed but my parents were told that I would qualify for 'cosmetic surgery' if I wanted it when older. My parents were also told my genitals were 'slightly unusual' but also 'common amongst girls.' I was assigned female and raised that way, without any question. I don't think my parents have ever considered I might be intersex. It simply wasn't acknowledged.

I have struggled with gender dysphoria for a long time and only recently put the pieces together (in my case, ambiguous genitalia + slight hyperandrogenism) that I am intersex. I guess I'm just feeling confused. Was I really intersex from birth, or were my doctors right? If I had known earlier, could I have predicted the PCOS/NCAH diagnosis that I'm currently seeking? Does it matter?

I think that discovering so much about myself all at once (my mother only recently admitted to that doctor's commented on my genitals) is a lot to take in. Sorry for this messy rant. I suppose I just want reassurance that it's okay to feel lost, but also found, angry, relieved and a million other things.

Hi anon.

Thank you so much for sharing. Your ask really resonated with me. I have CAH and recently found out that at birth, doctors spent a long time commenting on my genitalia and refused to assign me a sex for several days. For a long time, I had thought that my intersex traits only became noticeable at puberty, and it really was a shock to learn they had been visible at birth! Even though I had always been intersex my whole life, it was overwhelming to realize that information had been purposefully hid from me.

Intersex variations are lifelong and congenital, meaning that every intersex person is born intersex, and will always be intersex throughout our life. If our intersex traits aren't visible at birth or that information is hidden from us, many of us might not find out until later in life, when our intersex traits become noticeable, or when we can investigate our intersex traits as adults. Every intersex person is intersex our whole lives, and all of our experiences are valid.

It is a pretty common intersex experience that when we have intersex traits at birth, a lot of time our parents are not told that we are intersex, and doctors use a lot of euphemisms to talk about our genitalia and surgery options. It sounds like you are intersex, have been intersex since birth, but that doctors were not interested in exploring to make a diagnosis at birth or sharing that information with your family. If you're able to access your medical records, sometimes more specific information can be written down that might give context to comments doctors make, but that isn't always accessible.

I know how overwhelming it can be to learn all these new things about your body and experiences, and I really do want to affirm that it makes so much sense that you would be navigating these complicated feelings of loss and relief at the same time. It can finally feel like things are clicking and that you've finally found something you've been missing your whole life, but also at the same time feel that rage and grief that you weren't able to access that knowledge early to be able to understand yourself. Especially when we have painful, difficult, or confusing experiences with our bodies, our gender, dysphoria, etc, it can feel really complicated to discover that we're intersex and that if things had gone differently, we might have been able to navigate those experiences differently. You deserve to have room to explore and express all these feelings, whether that's through talking with other intersex people or just expressing your emotions in any way. If you want support during this process of self discovery, you are welcome to send an ask off anon to join our discord server, or join support groups like InterConnect and Club Intersex.

Really just want to send all the good energy your way, and know that you are absolutely not alone in what you've shared. This is such a common intersex experience and we really understand the emotional roller coaster it can be to navigate all this. You are allowed to make your own meaning from this and decide what matters to you, and you are in control of any steps you want to take to seek or not seek official diagnosis and testing.

Sending all the love and solidarity 💛💜💛

[momett]

idk reminder that PCOS is an intersex condition if you feel it is. intersex isn't a diagnosis. PCOS shares nearly the same symptoms as NCAH, one of the most widely agreed upon (and common) intersex conditions. if PCOS isn't an intersex condition then neither is NCAH by that logic.

[neuroticboyfriend]

if you don’t mind me asking, what IS your disability? i’ve only heard of genetic disorders causing or being related to intersex

i have many disabilties, but im assuming you're only asking about the ones related to my intersex variation. but i haven't been properly diagnosed, so all i can give are possible.

my intersex variation is either PCOS or NCAH (the more likely one). i also have POTS, which would be connected to NCAH if i have it. and i may have hEDS... which could also be connected to NCAH due to how close the CYP21A and TNXB/TNXA genes are (CAH-X Syndrome).

but if it is PCOS, it's still genetic and poses me some health issues, which exacerbates my other health issues.

[gurorori]

general trans mika hcs r great but get ready for.. intersex mika