Author Topic: Could I be CAH Intersex? Severe health trouble. And why I'm asking you.  (Read 376 times)

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Offline Binks

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I've tried asking a doctor about my gender more than once and I've been ignored. So I need to check with someone who knows more about this.

I also have severe health problems and, for this reason most of all, I need to know if I should push this point with my doctor.

If you are willing to read this and can help out instead of automatically saying I should try again with the doctor I'll be forever grateful. I'll be as brief as possible.

Is it possible I am CAH Intersex? (Congenital Adrenal Hyperplasia.)

I've always felt like a male, but appear female.
About to turn 36 and have some odd symptoms with no real diagnosis.
Father has Addisons Disease - an adrenaline and cortisol illness.
I have necessitated several tests for Addisons Disease due to bizarre symptoms over the years (I don't have it).
I have had only vague, unhelpful diagnoses since my health nosedived at puberty.
I had a two-stage puberty. Not sure if this is normal.
Have a very wide ribcage.
Breasts were full sized, a UK cup size F by age eight.
Approx age 12, periods started. They were abnormal. Would have bled to death unless put on hormonal contraceptive, so was put on The Pill.
My voice broke rather than stretched.
My medical records from age 12 and below are sealed.
Have inverted nipples.
Had abnormally high sex drive at an unusually young age.
Periods became rare, were always irregular.
Can go years without periods and do not take contraceptives anymore.
When periods do come, they are abnormally heavy and cause "PMT" that floors me for up to 3 days and nights (being unconscious and feeling like flu) before bleeding very heavily.
Have a partial moustache. Cheeks a bit fluffy.
Pubic hair appeared very young, to my then distress.
Facial features are androgynous.
Have had topical alopecia three times in life.
Still have full-on acne. Nothing gets rid of it. Face and shoulders.
Get fight-or-flight adrenaline rushes at the slightest worry, and so suffer tremors, shakes, etc.
Have been hospitalised with low potassium and other odd symptoms (such as something that looked like chemical burns) a number of times.
Have low cholesterol.
Urinate abnormally high amounts of protein.
Crave unusual amounts of salt and sugar, especially salt.
Always feel thirsty, more so if I've not had enough salt, and don't have diabetes.
Have a large clitoris. (Haven't seen any others that look like mine so far.)
Clitoris can get erection so looks like very tiny penis. Again, don't know if normal.
Have very large labia. Not seen one like mine yet.
Have some sort of abnormality inside vagina but shocked doctor did not explain what it was. Only know there are thick ridges in there that aren't normal and it's quite tight.
Have a crap immune system.
Have been pregnant once, but pregnancy had to be terminated due to a severe abnormal reaction - it was killing me.
Healing from termination also almost killed me. Hospitalised "an hour away from death".
Lactation should not have happened, but did, and for a year even with medication to stop it.
Have chronic pain, fatigue, no real explanation why.
Hands/fingers swell, cannot figure out a pattern.
Noticeable, but not huge, Adam's Apple.

I've probably missed some important things out but it's hard to list this sort of thing.

It's going to be very, very difficult to get taken seriously if I try, yet again, to bring up this sort of subject with a doctor. I suppose I need to know if there's anything to this before attempting to bring up the subject in any way again.

I don't really know what else to say and I don't know if I'm just being stupid. Don't know who else to ask.

But any replies would be a help.

Thanks if you've read this far.

Online Dena

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Welcome to Susan's Place. Normally intersex shows something visibly detectable. Nothing in the list seems to to match that so it would take genetic tests to verify if your intersex. What I suspect is you have high levels of testosterone. This can be easily verified with a blood test. You should ask your doctor to run testosterone, total estrogen and estradiol. From those numbers the doctor might be able to start forming a diagnosis.

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Online Alaskan Danielle

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Oh, by the way Binks, so that the other members here on the Forums will know that you have become a member of Susan's Place
please go to the Introductions Forum to introduce yourself and to briefly tell the other members here about yourself and be sure to reference some of what you stated here!   You will then have a better chance of getting the answers that you are looking for regarding your specific interests and concerns and you will be able to share with others as they share their experiences with you once they know that you have arrived.

I see that @Dena already sent a welcome message to you... be certain to look at the informative LINKS that she included in her message... there are details there that help you to best navigate the Susan's Place site.

Please also allow me to Welcome YOU to Susan's Place,
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Offline Doreen

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Welcome to Susan's Place. Normally intersex shows something visibly detectable. Nothing in the list seems to to match that so it would take genetic tests to verify if your intersex. What I suspect is you have high levels of testosterone. This can be easily verified with a blood test. You should ask your doctor to run testosterone, total estrogen and estradiol. From those numbers the doctor might be able to start forming a diagnosis.

Things that you should read

Not always.  Often people can be born internal uterus & ovotestes and be 'completely' male on the outside.. its known as Persistent mullerian duct syndrome.  They might have ovotestes..  might have internal ovaries, external testes.  Often girls that don't have periods won't know until puberty or after when.. they finally report no periods.  Lots of shame, ridicule, poor families, lack of education, etc.. can cause this to be extended to much later in life as well (my case is similar to that). 

Ultimately when in doubt, you will need to see a physician... most likely several, and a reproductive endocrinologist... maybe several.  Many have NO CLUE and look at you like an alien. THIS I know!!  And they'll keep passing the buck to other specialists.

Offline AnonyMs

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How can medical records be sealed?

Offline Binks

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Well I wouldn't even ask... probably wouldn't even consider it... if it weren't for my bizarre family history.

See, in my family it's normal to have an extremely rare genetic condition. This ranges from Addisons (which I've mentioned and is the more common rarity) to such things as a type of Siamese twin in the family. And I'm only talking about no further than first cousins. So rare is normal, in a way.

And whatever is up seems to orbit around these two things: adrenaline and cortisol. I've only taken cortisone once in my life but it was the best month of my life in the last two decades at least.

When it comes to scans and exploratory surgery, I know they've been botched before. Especially the scans. For over a decade they kept saying they couldn't get clear pictures. Last time I had surgery they found twisted tubes tied in reef knots that had been like that over a decade (and not been seen on any scans).

Again, not sure if this means anything at all but my brother had undescended testicles. I don't really know what kind of family history matters in these cases.

I really appreciate the replies and I'll try to think of an introduction.

Offline Binks

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How can medical records be sealed?

Maybe sealed is the wrong word. I cannot access them. There was a change in law when I was 12 and I can access anything from that point onwards, but not before. Anyone who wishes to access their own files from before that year will be told those records are sealed.

Offline Doreen

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Maybe sealed is the wrong word. I cannot access them. There was a change in law when I was 12 and I can access anything from that point onwards, but not before. Anyone who wishes to access their own files from before that year will be told those records are sealed.

All of my medical records were 'missing' except the actual birth certificate. The alleged allergy shots when I was 11?  nope.  Even my inguinal hernia operation when I was 16, they don't even have a record of me as a patient.    I WAS THERE and paid for the damn op, I know I was a freaking patient.  I highly suspect they removed a 'mass' during the operation.  Aka streak gonad.  Because the mass vanished (and it wasn't intestinal in nature).   So yes ... 'sealed'?   I'd just say missing, at least in my case. 

Offline Binks

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That's terrible. :/ I'm aware of how often doctors will tell you one thing then write something completely different on your paperwork. Then those files go missing or become inaccessible because said doctors don't wish to be held responsible for decisions which have become out of date or out of vogue. Or for the comments they put on there that they thought would be private from the patient themselves.
I had some things cut, untied and removed a few years ago but what they told me after the op doesn't match what they wrote on the paperwork. And you sound an utter fool repeating what you've been told to a new doctor when they just say "that's not what it says here".
I feel your rage for it.

Offline Doreen

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That's terrible. :/ I'm aware of how often doctors will tell you one thing then write something completely different on your paperwork. Then those files go missing or become inaccessible because said doctors don't wish to be held responsible for decisions which have become out of date or out of vogue. Or for the comments they put on there that they thought would be private from the patient themselves.
I had some things cut, untied and removed a few years ago but what they told me after the op doesn't match what they wrote on the paperwork. And you sound an utter fool repeating what you've been told to a new doctor when they just say "that's not what it says here".
I feel your rage for it.

I just recently had a pelvic cystoscopy that .. was incredibly vague.  Basically he said I have no internal reproductive structures other than a vagina that was visualized.  Pray tell how can someone be born with no internal reproductive structures and still be .. as healthy & frankly intelligent as I am.  Mullerian/wolffian agenesis carries some rather serious problems ..  Yet they choose that diagnostic medium over the ultrasound, ct scan & mri.  RIDICULOUS. I bet in 5 years I'll cease to have been a patient in the charts for him.

Basically keep medical records.. from everything you do.  Because if you don't they might conveniently vanish.  Even MRI's & such.

Offline Zoe_Kay

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Re: Could I be CAH Intersex? Severe health trouble. And why I'm asking you.
« Reply #10 on: August 13, 2018, 03:41:24 pm »
Not always.  Often people can be born internal uterus & ovotestes and be 'completely' male on the outside.. its known as Persistent mullerian duct syndrome.  They might have ovotestes..  might have internal ovaries, external testes.  Often girls that don't have periods won't know until puberty or after when.. they finally report no periods.  Lots of shame, ridicule, poor families, lack of education, etc.. can cause this to be extended to much later in life as well (my case is similar to that). 

Ultimately when in doubt, you will need to see a physician... most likely several, and a reproductive endocrinologist... maybe several.  Many have NO CLUE and look at you like an alien. THIS I know!!  And they'll keep passing the buck to other specialists.

All true!  And I have Persistent mullerian duct syndrome so if anyone has any questions on that, feel free to send me a PM!
"To grow, you must be willing to let your present and future be totally unlike your past. Your history is not your destiny." ~ Alan Cohen

Offline josie76

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Re: Could I be CAH Intersex? Severe health trouble. And why I'm asking you.
« Reply #11 on: August 13, 2018, 04:54:32 pm »
Maybe sealed is the wrong word. I cannot access them. There was a change in law when I was 12 and I can access anything from that point onwards, but not before. Anyone who wishes to access their own files from before that year will be told those records are sealed.

In my state, all paper records get destroyed after 10 years. Computer records they keep now but it costs too much for the hospitals ect to store documents offsite. I have no records from my childhood except the birth certificate. No record of what doctors say appears to be a hypospadias repair. Getting tonsils removed and a couple of other incidents.
Definitely keep copies of all medical records you can. Get CDs of CT, X-rays, and MRIs.
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