Partial Androgen Insensitivity Syndrome

[Bobbijean]

Hi all,

 

I believe I may have Partial Androgen Insensitivity Syndrome (PAIS); likely Quigley Grade 2.  I have documented the following forensic evidence of intersex condition, possibly 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.

 

Is anyone aware of specific testing that can be done to determine my condition?  I'd really appreciate it.

 

I have been diagnosed with Gender Dysphoria, but at age 59, I'm not sure that transition is practical.  But I would like to know what comorbidities I may have to negotiate as I age.

 

Hugs,

[VickySGV]

It will require some additional medical testing that may require referral by your Primary Care Physician, but can be helped along by your Gender Therapist.  Contacting your local LGBTQ Community Center could lead you to resources at one of the universities in your state, or you could go directly to one of the universities.  I am in California and know that both the University of Southern California, and University Of California At Los Angeles have medical research schools and health programs, I would suspect that the University of Colorado's medical schools would have similar programs that could help you.  Perhaps even your wife's school has one as well.

[Jessicaj]

Hi, i just joined and have been browsing rhe site to familiarize myself and help figure out where I may best fit in. As I said in my intro post,

 

I was identified as male at birth but for as long as I can remember, always thought I really was female.  Every night I would go to sleep trying to find the courage to tell my parents but I never did.  Over the last year, i have learned that i have multiple signs of having been exposed to high dosages of estrogen in the womb and that the criteria posted by the Intersex Society of America would def classify me as intersex.  Altho not foolproof, i also have learned that my personality traits put me well into the feminine quadrant.  With that context, its no surprise that I will dress and act female whenever i can. I have only been “out” for makeovers tho but I will dress in jeans, booties etc to spend a day shopping (but with a coat over all).  I wish those days were my everyday experience but they are not.  Hope that’s enuf of an intro and hoping also that i can share and learn more being a member here.

That post pretty much sums it up but I should also give a few more details.  I recently learned that my lifelong peeing from underneath is hypospadias.  Also have been diagnosed with varicocele and sterility.  I have also read abt finger length and have markedly longer index fingers compared to my ring finger along with gynecomastia and a “soft” musculature with longer slender arms.  
 

From what I have read, this all seems indicative of higher dose estrogen exposure but for me, it helps explain why I have always felt that I was really female.  All my personality traits are the same as those that most women have and none are the same as those that most men have.  
 

i am not sure where this is all leading but learning more abt myself will help me decide.  I have ventured out for a few makeovers and felt very much at ease and happy with the results.  Next step may be a small gathering but we’ll see.  
 

would luv any comments or insights and look forward to getting to know you more. 
 

jess

[Bobbijean]

Hi Jess,

 

You may have been exposed to diethylstilbestrol (DES).  It was given to women from the 1950s to the 1970s.

 

Hugs...

[VickySGV]

1 hour ago, Bobbijean said:

It was given to women from the 1950s to the 1970s.

 

Back up 10 years + there, I was a DES boy baby born in 1948.  My mother miscarried a girl fetus less than a year before she became pregnant with me.  She had been in the U.S. Army Nurse Corps, and they were quick to try everything when miscarriages happened especially to the wives of military personnel which she was as well as on their staff.