How do I find out for sure?

[NotAnAlien]

Hi everyone. I came to this site because it seems to be a good place to discuss intersex issues.

I think I'm intersex, but I'm not sure how to verify it or find out more about what kind of intersex I am.  I'm a 43 year old male and I've always felt weird about my body and my gender - not to the point of wanting to transition to female, but sometimes I think of myself as female.

I'm certain I have some kind of hormonal issue, because every other man in my family is so hairy they look like teddy bears. My brother has literally been called Chewbacca, but I have basically the same body hair as my wife.  Also they're all balding, some as soon as twenty years old and I have all my hair still with no sign of thinning.  I have a weird topography of the pelvic floor; there's at least an indentation of some kind in front of my anus, but I don't know how deep it goes because it's uncomfortable to try.  There's other stuff like no Adam's apple, girl arms and hands, gynecomastia, etc.  I do have two children though, so the man stuff works.

I talked to my mother about my concerns and she said she never noticed anything unusual and no doctor did either. Well the indentation is kind of covered by a flap of skin, so that seems possible.  Recently I tried to talk to my doctor about it and he was dismissive.  He said something like, "It's all within the range of normal and you're healthy so you shouldn't worry about it."

So now I feel kind of stuck.  I want to know more, but I'm not sure what to do. I've thought about faking symptoms of something serious in order to get tests I want, but I don't really want to do something dishonest. Should I just look for a new doctor, and how do you find one who is more interested/supportive?

[Dena]

Welcome to Susan's Place. For intersex testing you will need to find a doctor willing to run all the tests that are required. They will include blood for hormones levels and extensive genetic testing, physical exam and ultrasound. Unfortunately I suspect you would need to pay out of pocket for unless the doctor feels there is a reason to run theses test. Normal genetic variation is possible as my body has been pretty hair free and I have never been muscular. Testosterone has done other damage to my body such  as voice an adams apple. The primitive testing that was available when I transitioned turned up nothing but who knows what more detail testing would show today.

Possibly and endocrinologist would be the place to start as they could do hormone and may be able to add the genetic tests in as well.

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[NotAnAlien]

Thank you, Dena. I'll see if I can get an endocrinologist to check me.  I'm just not sure how much I can afford, so it might take a while to find out anything.  That's OK I guess, I'm used to waiting.

[Sharon Anne McC]

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I suppose you can have various chemical tests done on your blood to sense the hormones flowing through your system and the manor in which your cells accept or reject those hormones.

A simple way is a basic physical exam.  Your doctor, or perhaps a specialist, can feel for internal organs.  My gyn re-verified my absence of a prostate at my appointment the other day.  She reminded me that M-F must be checked to be certain no surprise malignancy develops.

Ultrasound and other scans can get a visual look inside.

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[DawnOday]

Have you also developed heart disease or diabetes? You were born in the time of DES between 1937 and 1971 except over seas it is still being used. Not saying it's happened to you. But is worth a look. http://www.desaction.org/des-sons/

[NotAnAlien]

I've been diagnosed pre-diabetic, but I think I might have had a diet coke before that fasting blood test because I forgot about until my reminder went off.  So maybe not.  I can't really afford anything other than finding a new primary care physician right now, but I made some progress anyway. 

It turns out I have a monthly period, with actual menstrual blood. It's just a little, so I never noticed until I was looking for it, but I've seen it 2 months now.  So I guess that means yes my extra hole is a vagina and I have a uterus too. 

[Dena]

In your case, total estrogen and estradiol would confirm that you are intersex or at least have something that needs to be checked out. As for the diabetes, if you are overweight, losing weight can make a huge difference. If your weight is within reason then you are pretty much limited to reducing sugars and starches.

[NotAnAlien]

I have an uncle with type 2 diabetes, so I took it seriously even though I'm not sure it was a valid test.  That was about five years ago, and I ate a lot of junk food, fast food, soda, etc.  I stopped that and cut most sugar and starch from my diet.  I try to eat only healthy starches like brown rice and whole grain bread now.  My blood sugar since then has been better, so I'm not too concerned about it anymore.

[becky.rw]

Diabetes..  what was your A1C?   That wouldn't be effected by your diet coke, or even real food.   If you're worried about it, there's a lot you can do with exercise; you can look up "exercise effect on insulin resistance" to learn more; but basically, any exercise activity lasting 30min or more temporarily improves your insulin sensitivity; you can overlap exercise routines through the week such that the condition won't progress, or at least greatly reduce its rate of progression.

intersex... if the docs won't pursue the issue, you could fish for the answer yourself, but you have to pay retail price for the tests; fortunately most will be test once and know...  so you could spread it out over a year or two cost wise.

[NotAnAlien]

They didn't do A1C on that test.  Fasting glucose was 101 and the normal range ended at 99.   When I did get A1C it was 5.6% which was within normal range.  But I had already changed my diet by then. 

[cheryl reeves]

Don't feel alone there are more of us out there then one realises,i developed as a girl,but have a penis,no Adams apple,no hair loss,hair on body grows like a woman,womens arms,and breast development,i have a space behind my penis I can hide my penis in when tucking. I'm 51 and can pass for 35,clean shaven I can pass real easy.

[NotAnAlien]

Dena, would this be the kind of test I need?

https://www.accesalabs.com/Hormone-Tests-Advanced-Panel

[Dena]

That is pretty costly for the lab work, I had Prolactin, estradiol, Estrogen Total and Total Testosterone.

Because the test was to be used for HRT, they added in CBC(complete blood count), Comprehensive metabolic panel, Hepatic (liver function panel), Lipid panel, Thyroxine free and total, Thyroid Simulating Hormone all for $100 out of pocket including the blood draw. On two different test, I used two different labs but Sonora Quest Laboratories was the only one who could do the estrogen.

If you are going to have a physical, you might just have the doctor add the 3 tests to the lab work and have it all run at once.

[NotAnAlien]

Thanks for the support, Cheryl.  My body looks much younger than my age and very androgynous too, but my face looks terrible.  I had horrifically bad acne from age twelve to twenty and my parents wouldn't even let me see a dermatologist until I was sixteen.  So I have severe acne scars.  I've never done anything about that, despite the fact it's what I hate most about myself, because it's one of the few things that make me look more masculine.

That was before I suspected I was intersex though, and now I'm less sure that I should be trying to be something I'm not... but still that's more money I don't have now.

[cheryl reeves]

I'm lucky to never had acne,guess I didn't have enough testosterone to develop like a male but enough to father 3 children. I never had myself checked out for I'm afraid they might want to boost my testosterone and I won't have any of that. I know if I took hrt my body would finish developinglike a female's for estrogen is what has held that back.