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Your diagnosis?

Started by LoriLorenz, January 19, 2015, 11:36:32 AM

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LoriLorenz

Ok, so now I've had two completely independant of each other mentionings of the possibility that I might actually be intersexed.

What do you think?

I was born on the exact date predicted by my mother's doctor - which was unusual - but not unheard of. What my dad remembers that was so, was that I was born with a vagina, but also had a "penis-like protuberance" (his words). This made the doctor go "what is it?" for a few days until whatever swelling went down or ??? I was given the F marker and sent home with the 'rents. My personal theory is that the genetic issues were STILL facing off with the gender orientation and the genetics won out... sadly.

Anyhow, at 10 days old, the doc did the usual checkup, and noticed "hmmm... feels like s/he (I I.D. as FTM, so using this because... I want to!) has only 1 kidney. Between that and the microtresia of my right ear (the outer part of the ear doesn't form properly), the doc sent me for a battery of tests. From those tests the most important thing they discovered is that I am indeed Deaf, also that I have hypertonic muscles, which was evident when diaper changes were preceded with a wrestling match between balled up me and parents trying to pry me apart. Not sure when they also discovered my legal blindness in the right eye, but there you are.

Now, fast forward to the summer before grade 7. Mom was in the kitchen and I came in, dropped something and bent over to pick it up. Being a nurse, my mother noticed something odd and asked me to bend over again. She discovered my burgeoning scoliosis, which an x-ray later confirmed.

Oh great, what else is gonna come down the pike? So, rather than wait, we started the journey to many... many doctors, including a gyno who discovered the blind vag and said, ultrasound! That test showed the complete absence of a uterus, but what seemed to be two working ovaries. I do have small but normal sized milk bags, but I am not certain I have the typical amount of hair growth under my arms. I also have a decent crop of chinny hairs at 32 (joking/lovingly refered to as my goatee).

In the end, whatever doctors I saw, I was diagnosed as having Turner Syndrome and Klippel-Fiel Syndrome. Did they miss the intersex part?
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ImagineKate

After talking with mom, I am confirmed DES exposed.

Yay me. :(
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Aazhie

Hey!  Bumping this for more attention, however... until you get an actual test to check out your DNA you may not be able to tell from symptoms alone. 

That being said, I work at a hospital and have worked with veterinarians as well. To me in a  very not a doctor kind of way- people are animals and animals tend to have genetic quirks, sometimes an individuals tends to have a whole truckload of birth deformities but would still be considered an average XX or XY individual.  Things like albanism for mammals tend to come with things like blindness/deafness and bone structure problems.  In many dog breeds leucistic (white with blue eyes and black nose, rather than pink eyes/pink nose) dogs can have a slew of problems that are genetic and passed onto their young, which is why some breeds are not allowed to have certain colors. 

I would not consider your particular case as indication of intersex, but there's many varieties of intersex expression.  Just because it doesn't sound typical doesn't mean it isn't intersex. Some issues can be influenced by exposure to certain chemicals in the womb during development, rather than genetic.  There's a pretty popular study that gay men are exposed to higher amounts of estrogen type factors in utero.  The benefit seems to be that any sisters they have are extra fertile,so there's even a natural advantage as to why that kind of thing could happen.  That doesn't make being a gay guy with lots of nieces and nephews much different than if there's also genes that influence sexual preferences in other individuals!  Also, genes are extremely weird- there are occasionally chemicals or viruses that can actually alter DNA, so there's certainly possibility that something got borked up somewhere unexpectedly?

Again, until you see a doctor and preferably a specialist I don't know that anyone here can really diagnose?
You build on failure. You use it as a stepping stone. Close the door on the past. You don't try to forget the mistakes, but you don't dwell on it. You don't let it have any of your energy, or any of your time, or any of your space.
Johnny Cash
  •  

Rudy King

Quote from: Aazhie on April 06, 2015, 04:15:48 AM
Hey!  Bumping this for more attention, however... until you get an actual test to check out your DNA you may not be able to tell from symptoms alone. 

That being said, I work at a hospital and have worked with veterinarians as well. To me in a  very not a doctor kind of way- people are animals and animals tend to have genetic quirks, sometimes an individuals tends to have a whole truckload of birth deformities but would still be considered an average XX or XY individual.  Things like albanism for mammals tend to come with things like blindness/deafness and bone structure problems.  In many dog breeds leucistic (white with blue eyes and black nose, rather than pink eyes/pink nose) dogs can have a slew of problems that are genetic and passed onto their young, which is why some breeds are not allowed to have certain colors. 

I would not consider your particular case as indication of intersex, but there's many varieties of intersex expression.  Just because it doesn't sound typical doesn't mean it isn't intersex. Some issues can be influenced by exposure to certain chemicals in the womb during development, rather than genetic.  There's a pretty popular study that gay men are exposed to higher amounts of estrogen type factors in utero.  The benefit seems to be that any sisters they have are extra fertile,so there's even a natural advantage as to why that kind of thing could happen.  That doesn't make being a gay guy with lots of nieces and nephews much different than if there's also genes that influence sexual preferences in other individuals!  Also, genes are extremely weird- there are occasionally chemicals or viruses that can actually alter DNA, so there's certainly possibility that something got borked up somewhere unexpectedly?

Again, until you see a doctor and preferably a specialist I don't know that anyone here can really diagnose?

Where did you get your info on Albinism?  Albinism, only effects ether the eyes only, or hair, eyes and skin.  And I've never heard the one on bad hearing or having bone structure problems.
  •  

Bunter

I'm no doctor, but I know that when you have multiple malformations, there is often also a genital malformation involved. For example, children who were affected by Thalidomite often also have intersex conditions (though it is rarely talked about).

On the other hand, I *think* I remember that new born babies often have swollen genitals because of the huge amount of hormones they are swimming in in utero. This is common and goes away on it's own. But google it, I'm not quite sure if I remember rightly.

Quote from: LoriLorenz on January 19, 2015, 11:36:32 AM
Ok, so now I've had two completely independant of each other mentionings of the possibility that I might actually be intersexed.

What do you think?

I was born on the exact date predicted by my mother's doctor - which was unusual - but not unheard of. What my dad remembers that was so, was that I was born with a vagina, but also had a "penis-like protuberance" (his words). This made the doctor go "what is it?" for a few days until whatever swelling went down or ??? I was given the F marker and sent home with the 'rents. My personal theory is that the genetic issues were STILL facing off with the gender orientation and the genetics won out... sadly.

Anyhow, at 10 days old, the doc did the usual checkup, and noticed "hmmm... feels like s/he (I I.D. as FTM, so using this because... I want to!) has only 1 kidney. Between that and the microtresia of my right ear (the outer part of the ear doesn't form properly), the doc sent me for a battery of tests. From those tests the most important thing they discovered is that I am indeed Deaf, also that I have hypertonic muscles, which was evident when diaper changes were preceded with a wrestling match between balled up me and parents trying to pry me apart. Not sure when they also discovered my legal blindness in the right eye, but there you are.

Now, fast forward to the summer before grade 7. Mom was in the kitchen and I came in, dropped something and bent over to pick it up. Being a nurse, my mother noticed something odd and asked me to bend over again. She discovered my burgeoning scoliosis, which an x-ray later confirmed.

Oh great, what else is gonna come down the pike? So, rather than wait, we started the journey to many... many doctors, including a gyno who discovered the blind vag and said, ultrasound! That test showed the complete absence of a uterus, but what seemed to be two working ovaries. I do have small but normal sized milk bags, but I am not certain I have the typical amount of hair growth under my arms. I also have a decent crop of chinny hairs at 32 (joking/lovingly refered to as my goatee).

In the end, whatever doctors I saw, I was diagnosed as having Turner Syndrome and Klippel-Fiel Syndrome. Did they miss the intersex part?
  •  

Lady Smith

I'm a DES child and I haven't a clue what my formal diagnosis might be regarding my intersex characteristics.  At the age I now am and the stage of life I'm at I'm not really much bothered over finding out either.  The most important thing for me was being able to accept and embrace my differences as simply being part of the fabric of being myself.
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Serenation

Lori while Turner Syndrome is listed as intersex these days from what I'm reading that doesn't explain you having no uterus. You have something else going on it would seem. Hope you are doing well
I will touch a 100 flowers and not pick one.
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