i had two doctors (an endo and a GP) give me some sort of intersex diagnosis but are kinda clueless on where to go from here.
my insurance company rejected my endo, so im in debt with him and until i can pay him, he wont see me.
my GP just wants to brush it under the carpet and ignore it, but she does aknowledge it.
i was raised female (medical records have never been found from my birth).
i started female puberty, but it abruptly stopped and i started to masculinize shortly after (so i have breasts that look like they are sort of deflated and small. basically half developed.)
i seemed to have normal periods, but i had several severe digestive problems resulting in having my gallbladder removed at age 20. my doctor had no idea why that happened and i dont know if its in any way related....
i went to the endocrinologist to start testosterone treatment and got all of my bloodwork back.
we were going over it and he got to my hormone levels and said "oh my god"
i responded with "um, what?" (thats not something you want to hear from your doctor)
he said that my hormone levels were severly out of whack. i had an extremely high tesosterone level and hardly any estrogen. he said he didnt know how i had periods and it lookd like i would go through a cycle, but nothing would happen.
he asked if was "sure that i had ovaries"
he said it could be a form of CAH, but he really didnt know.
he said he was sure it was some sort of intersex condition, but didnt know exactly what it was.
i was never able to go back........

so anyway.
basically i dont know where to go from here.
im really confused.

any advice would be helpful.......

elijah

(sorry this is so long. this is really hard to talk about. my parents have kept a lot from me for a long time and its rough getting through all of this. my mom said she knew something was wrong when i hit puberty....i dont know if it goes any further back than that. my doctor freaked so they sent me to therapy. hah.)

Welcome elijah!

There are perhaps 5000 different intersex conditions. But, from what you've said, one might make some observations.

Spontaneous menstrual periods are a pretty good indication of having two X chromosomes. Considering that conditions like xxy <i>generally</i> result in a male phenotype, I'm guessing that your karyotype is 46,XX.

Having some spontaneous feminization at puberty indicates functional ovarian tissue. Or, another possibility is testicular tissue and androgen insensitivity. Having later spontaneous virilization would tend to preclude androgen insensitivity.

So, we're left with conditions that start with feminization and turn to virilization. And probably in a 46,XX karyotype.

* 46,XX true hermaphrodite - with both ovarian and testicular tissue is a long shot. I don't see why the ovarian vs testicular hormone production would change (unless there were also an adrenal change at puberty)

* 46,XX CAH - onset at puberty. The CAH folks here would have to comment on that one. All I know is that it can happen

* 46,XX - polycystic ovarian syndrome. They say it <i>usually</i> involves normal estrogen levels.

There are other folks out there who have similar conditions. I recall speaking with someone who had periods, got pregnant, had a baby, and then started virilizing. Sorry I don't recall the name. Did an intersex documentary. You might ask the folks at ISNA. They'd remember the name.

Jane :o)

Might be LOCAH-Late Onset CAH or might even be Progestin Induced Virilization that would be the root of your being intersexed.

I can't believe your endo is refusing to see you because you still owe money. What kind of dr is that? Can't they set up a payment plan for you? If your endo was used to working with IS patients maybe he would have known better how to code the insurance claims. As my dr explained to me when she started testing me, to tell the insurance you are a pseudohermaphrodite is one thing, but if the dr states that you are a true hermaphrodite then your chances of being covered by insurance after that are about zero. You might want to email Betsy, the moderator for Bodies, because she has a list of recommended drs and there might be someone in your state or nearby that would be more understanding.

Hey if you ever want to talk Elijah just PM me. I've spent the last year trying to find out "what" I am. Its been a rough road, but I am learning who I am as I start to acknowledge both of my genders. So I can relate to what you are going through. It helps to have others we can talk to who are facing the same things in their life.

Angela

[QUOTE]Originally posted by claraJane
[B]Welcome elijah!

There are perhaps 5000 different intersex conditions. But, from what you've said, one might make some observations.



5000 different IS conditions? 5000??? Are you sure about that? Last I heard there are 30 known conditions with 75 variations of A.I.S. But I couldn't list all 30, as all I have ever seen listed is maybe a dozen conditions

Hey Angela,

Probably not PIV. When the mother takes Progestins it can affect the phenotype of the infant. But I wouldn't think it would have a virilizing effect at puberty.

The 5000 number is a quote from Dr Martin Malin, a sexologist. Several years ago I asked him if we could talk. All of my relationships with "therapists" had been counterproductive and I wanted to "get over it". Commenting on medical diagnosis closure, he said "Don't expect closure. There are 5000 intersex conditions and you may be 5001." 5000 may be a wildly innacurate number. However, keep in mind that there are a multitude of proteins involved in sexual development and function. A problem with the synthesis or processing of any of these proteins could result in an intersex condition. What is surprising is that IS isn't more common than it is.

Regarding AIS. There is a website that lists the possible genetic mutations that result in CAIS or PAIS. Different mutations are classed as AIS even though the synthesis "problems" are much different. Is each mutation really its own condition?

Kind regards,
Jane

something that ive been dealing with as well is people trying to tell me "not to think about it"
my GP had/has been pushing for me to get a hysto for my underdeveloped/whatever ovaries.
she suggests it almost every time i see her.
ive been dealing with the trans community and their reactions and its not always been a positive one.
ive often got people not believing me or whatever.
maybe because i came out in the that community after starting transition from female to male.
i dont know its just frustrating and i dont really know where to go.
i feel like sometimes people want me to give them my medical record or something for "proof"

im just feeling out of place i guess....

sorry for rambling on.
just a lot of bottled up things coming up....

I was researching the term "True Hermaphrodite" and came across the web page of Berdache Jodan who states being born a True Hermaphrodite. Jordan also writes of chromosome struture of a True Hermaphrodite being 46 xxy (mosaic). It's an interesting and well done web page.

46xxy isn't a valid karyotype. The nomenclature doesn't allow for it. If you have two X chromosomes and one Y chromosome then you either have a total of 47 chromosomes or you're missing an autosome somewhere, in which case you're born dead.

47,XXY is Klinefelters
Mosaics are karyotypes like 45,X/46,XY or 45,X/47,XXY.
Chimaeras are karyotypes like 46,XX/46,XY and so on

True hermaphrodites, if you believe the medical journals are

usually 46,X (like Cheryl Chase)
some are mosaics of 45,X/46,XY (like me)
and some are chimaeras 46,XX/46,XY (like a really nice bloke on this list :) )

Although I've known some klinefelters who claim to have ovarian tissue (47,XXY), I can't find such in medical journals. That doesn't mean it doesn't happen.

I suspect that Berdache is chimera.

There is a good introduction to genetic nomenclature at
http://www.chromodisorder.org/intro.htm