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How do I know if I have an intersex condition?

Started by Nickrose20, January 03, 2014, 01:25:38 AM

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Nickrose20

I ask because even though I look very feminine. I have a lot of signs that show I have a lot of testosterone at least while I was invitro.

I had body hair when I was 2 at least

Body odor at 4 and by 6 or 7 I was a lot taller than my peer.

I started puberty at 6 almost 7. I got excessive hair and I realize that my pubic hair is actually a male pattern. I had a lot of leg and thigh hair. When I got older I got a deeper voice. It kind of cracked at one point when I was around 12.


Build bone structure is actually more male than female. I never got hips really. And my shoulders got broader. And down there things have never been all that right. For one I have a prominent clitoris since I was prepubescent and my cycles have never been regular.

My finger ratio shows signs virilization.

I bulk up quite easily and I have a very low fat percentage.

Due to having precocious puberty I was shorter than average

Smaller bones kind of childlike.


I was tall at first then I became short.


And I developed full grown breasts. I had at least C cups since I was 14 and finish tanner stages at 10 years old actually a little bit before I turned 10.


I get a lot of the time people will think in some way I'm a guy who wants to be a girl. And I've always gotten harassed for it even though I was born female... I go to a translation group and most of the people seem to think I'm a transwoman more than anything and when I was younger like 9-12 I was thought to be a boy.

I've always just wondered why in puberty it was so focused on my muscles hair odor and other virilizing qualities. And why some feminine signs didn't happen for me?


Otherwise I have normal female genitals though.
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Jessica Merriman

The only way I know of is to ask these questions to your primary care doctor. He could order some specialized lab test's if he thinks it is possible. I know of a genetic abnormality that can affect males called "Klinefelter's Syndrome". In males who have this they have an extra chromosome. One of the variations is (47XXY). this means that every cell in the body (hair, cardiac, muscle, etc.) is 50% male and 50% female. Signs of this manifest very early in life as feminization and delayed puberty. Talk to your doctor if you are concerned or would like to find out for sure.  :)
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Jamie D

Nickrose, you should be tested for congenital adrenal hyperplasia.
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Nickrose20

Yeah I've wondered if I had it. My drs never mentioned anything about it. I didn't see a dr until 8 though. I just wondered because I've always been a little more comfortable in my body because people think I look ambiguous. More so like a young boy because of my size. I'm also scared to find out because I know there are health problems associated with it. If I've gone without treatment I don't want a bad prognosis but I guess figuring out would help to rule it out hopefully.
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Jamie D

I'm not a medical doctor, but I do believe it is better to know where you stand, both physically and emotionally.
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JLT1

Wow,

I believe there is a good chance you are intersexed.     CAH is a reasonable possibility.  However, you need to see a geneticist who works in this area.  I know one who is a Cal Tech and one at Cedars Sinai who both work with adults.  (NO introduction needed, just call.)  Mayo clinic in Rochester MN will give a good diagnosis but my experience is that the treatment options they give are behind current thought.  In general, it is difficult to find someone that works with adults. 

Wish you luck.  If I can help in anyway, just post here until you can PM.

Hugs,

Jen
To move forward is to leave behind that which has become dear. It is a call into the wild, into becoming someone currently unknown to us. For most, it is a call too frightening and too challenging to heed. For some, it is a call to be more than we were capable of being, both now and in the future.
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Late bloomer

I wonder I  too am intersex.  Reading through posts I come to the conclusion that the answers are complicated.  I'm a male, 61 but was never much in the manliness dept.  I had my first female inklings when 4.  Then again when I came to puberty.  Would reach down and wish that what was there wasn't male.  My legs turned shapely, my hips wide, not a lot of body hair.  Much trouble learning to read, had to be tutored.  Absolutely a flop at expressing myself when it really counts.  Growth sprouts out-of-synch with all the other boys.  Bad at sports, hated most of it.  Couldn't fight back, just wasn't in me.  Always felt at home amongst girls, and later women.  Hard work later in life made me strong, but the muscle mass was never to be.  My 20's were near-normal, then broke down after that.  When alone, came to enjoy fantasizing about being a woman.  Always, with each episode of femininity, it was a passing thing.  And then came the illness of Hep C, cirhossis, and meds.  One of them is spiro, and that's all it took to send me over the edge physically and, to a limited extent, emotionally.  Budding breasts, fat redistribution, disappearing body hair, smoother skin, a feminine side co-existing with a male-side.  Where is all this body-morphing estrogen coming from?  It cannot be my testes, for they are but shut down, the androgen-blocking of spiro doing it's thing.  The only place left is my adrenal glands.  As a test, I got ahold of some bio-identical estrogen/progesterone.  Within minutes I got heavily aroused, and when that passed, spent the rest of the day in high-energy.  My body likes this stuff, and runs on it like high-octane in a sports car.  Giggly, bubbly, enjoying the feeling.
Don't know if the karyotype will show what's going on, and I'll have to wait because other conditions (life-threatening) demand priority.  Perhaps this 'discovery' is the key to my healing, perhaps not.
We are never alone.  We're just temporarily having communications difficulties.
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HughE

Quote from: Late bloomer on January 08, 2014, 08:48:09 PM
I wonder I  too am intersex.  Reading through posts I come to the conclusion that the answers are complicated.  I'm a male, 61 but was never much in the manliness dept.  I had my first female inklings when 4.  Then again when I came to puberty.  Would reach down and wish that what was there wasn't male.  My legs turned shapely, my hips wide, not a lot of body hair.  Much trouble learning to read, had to be tutored.  Absolutely a flop at expressing myself when it really counts.  Growth sprouts out-of-synch with all the other boys.  Bad at sports, hated most of it.  Couldn't fight back, just wasn't in me.  Always felt at home amongst girls, and later women.  Hard work later in life made me strong, but the muscle mass was never to be.  My 20's were near-normal, then broke down after that.  When alone, came to enjoy fantasizing about being a woman.  Always, with each episode of femininity, it was a passing thing.  And then came the illness of Hep C, cirhossis, and meds.  One of them is spiro, and that's all it took to send me over the edge physically and, to a limited extent, emotionally.  Budding breasts, fat redistribution, disappearing body hair, smoother skin, a feminine side co-existing with a male-side.  Where is all this body-morphing estrogen coming from?  It cannot be my testes, for they are but shut down, the androgen-blocking of spiro doing it's thing.  The only place left is my adrenal glands.  As a test, I got ahold of some bio-identical estrogen/progesterone.  Within minutes I got heavily aroused, and when that passed, spent the rest of the day in high-energy.  My body likes this stuff, and runs on it like high-octane in a sports car.  Giggly, bubbly, enjoying the feeling.
Don't know if the karyotype will show what's going on, and I'll have to wait because other conditions (life-threatening) demand priority.  Perhaps this 'discovery' is the key to my healing, perhaps not.

Late Bloomer, it's probably too late for you to find out now if you don't know already, but was your mother given a drug called diethylstilbestrol (or DES) while she was pregnant with you by any chance?

For the 35 or so years between 1940 and the mid-1970s, DES was the standard treatment in the US and worldwide for preventing miscarriages in "difficult" pregnancies, and several million expectant mothers were given it. For the last couple of years I've been looking at the link between DES (and similar hormone treatments) and transsexuality. Your story is highly reminiscent of my own childhood and teenage years, and seems fairly typical of the life experiences of DES sons.

Here's a list of things commonly seen with DES exposure (note that most of these can be associated with other causes of intersex too):

Born between 1940 and 1971 (US) or 1980 (elsewhere)
Mother with a previous history of miscarriages; diabetes; other risk factors such as being in her 40s

Birth defects:
Undescended testicles
Micropenis - a fully formed but considerably shorter than normal penis
Hypospadias
Epididymal cysts of the testicles (these are apparently Mullerian remnants - fragments of female tissue that would have been absorbed in normal male development)
Vestigial female organs or organ remnants
Intersexed genitals similar to grade 3 PAIS
Other genital abnormalities (in my case a hydrocele)

Later in life:
Feminine-looking facial features, developing a body structure that's more like the female members of your family than the male ones
Other symptoms of low testosterone such as a lack of body hair, gynecomastica and an inability to build upper body muscle
Very shy, socially passive behaviour as a teenager
Difficulty forming friendships with boys; having a special affinity with girls
Being bullied a lot; having an inability to fight back
Having no interest in sport
People tending to assume you're gay; lots of men being attracted to you
Identifying as a woman, or part of you identifying as a woman while another part identifies as a man

One effect of cirrhosis is that it can shut down your testosterone production, and if you're being given spiro on top then I'd imagine your testosterone levels must be close to zero! That'll be why your body has taken on a more feminine appearance (even without transgender HRT) and your latent female side resurfaced, since without testosterone, even small amounts of estrogen will be able to do their work unopposed. This is something you should discuss with your doctor, since very low hormone levels could be contributing to your health problems.
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Late bloomer

My mother probably was exposed to DES.  The doctors were very worried about my birth because of incompatible blood types.  She did miscarry after me. 
While I didn't have any of the initial physical symptoms (at least nobody told me of any), I have about 90% of the 'later in life' symptoms.
developing a body structure that's more like the female members of your family than the male ones  - I looked like a wide-hipped boy with the upper body build of a pre-teen girl.  A high-school coach made specific mention of it to me!
lack of body hair and an inability to build upper body muscle
Very shy, socially passive behavior before and during teenage, and after mid 20's.
Difficulty forming friendships with boys; having a special affinity with girls
Being bullied a lot; having an inability to fight back (a veritable nightmare, if I had to do it over again, I would run away from home as far as I could get)
Having no interest in sport - I was terrible at it too. 
People tending to assume you're gay (one of which tried to force himself on me- traumatic); lots of men being attracted to you
part of you identifying as a woman while another part identifies as a man
We are never alone.  We're just temporarily having communications difficulties.
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Nickrose20

Quote from: JLT1 on January 04, 2014, 10:36:18 PM
Wow,

I believe there is a good chance you are intersexed.     CAH is a reasonable possibility.  However, you need to see a geneticist who works in this area.  I know one who is a Cal Tech and one at Cedars Sinai who both work with adults.  (NO introduction needed, just call.)  Mayo clinic in Rochester MN will give a good diagnosis but my experience is that the treatment options they give are behind current thought.  In general, it is difficult to find someone that works with adults. 

Wish you luck.  If I can help in anyway, just post here until you can PM.

Hugs,

Jen


I'm in Nevada so that's close.

I also know I'm fertile. My dr. Said its unlikely my ability to get pregnant without medical intervention with cah. Given my family history. My mom and grandma and aunts have these qualities just not altogether. My grandma has broad shoulders big boobs narrow hips and very hairy but a normal to tall height. My mom has no hips is inder 5 feet and has the same height patterns builds up muscle has incredible strength her dad was a body builder at 5'3". But she has smaller shoulders 35". Mine are 40". And she has a feminine voice and face. My voice is heavy low and uneven but then again my grandma sounds like a man. People sometimes think she's transgender because of this but she had nine kids. My face isn't masculine my cheeks just are really flat when I don't smile. I have naturally large lips and eyes and an infantile nose almost. My face didn't seem to develop like adults do. I can't explain any of that though or the odor why I got it so young. My mom had started puberty at 10 no one in my family at a slim weight like myself started under 8 though. My mom has a happy trail but mine's much more than just a thin line.
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