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Partial Androgen Insensitivity Syndrome


Hi all!

I believe that I may have been born intersex with Partial Androgen Insensitivity Syndrome (PAIS) - possibly Quigley Grade 2.  I have documented the following forensic evidence of possible PAIS:

1.   I have a micro penis that does not, nor has it ever, meet the stretched penile length of 3.67 inches.
2.   I had a surgery at an early age around 2 years.  The surgery left a scar of an incision above my right testicle.  Was the right testicle undescended (cryptorchidism)?  In 1963 I was not a premature birth. This right testicle hangs higher than the left testicle.  The left testicle has an abundance of varicoceles.
3.   Penis has what appears to be a scar of a glanular hypospadia.  This scar is over 50 years old and difficult to tell.  Also, a scar at the tip of the penis, where the urethra was extended to discharge, that causes a wicked spray.
4.   Ten years ago, a test for testosterone was performed and the results were normal.
5.   My arms are the daintiest arms one has ever seen on AMAB.  No amount of weight lifting with supplements has ever been able to make them bigger.
6.   My arms are long and slender.  The span of the arms is 4-inches longer than my torso.  Legs are also longer than torso.
7.   Adam’s apple is small.
8.   The pitch of my voice is not naturally in the male range below 147 hertz.  Instead it is in the female range above 185 hertz.
9.   I started puberty late at about age 14 ½ to 15.  My voice didn’t start to crack until age 14 ½.   My grandson is not even 12 ½ and his voice has already dropped to solid baritone.
10.   My wife, who is a Registered Nurse with over 30 years experience and is now a graduate student studying to be a Nurse Practitioner, has pointed out that my prostate is small and difficult to find.
Are there testing regimes that can test so that I may find out for sure?  So far doctors seem completely disinterested.  I have been diagnosed with Gender Dysphoria, but I would like to get to the bottom of the intersex issue before medical transition.  Any suggestions you can provide are most helpful.


PAIS is tested for by looking for changes to AR (Androgen Receptor) gene. If they can't find changes to the AR gene, they do a androgen binding assay to measure androgen receptors. Intersex testing is just basic chromosome testing. You need the right specialist that can do these kinds of testing.

Thanks Kaleig!


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