Sounds familiar, my hips widened (to the point I have an hourglass shape), 36c/29/41 measurements. The symphisis pubis angle is 120degrees. I stretched my voice by practice to the point it got lower, but never experienced actual puberty changes to it, then 'fixed' it later surgically to remain high. No body hair, very little facial hair.. mostly annoying upper lip scragglies i yank out).
As far as baldness, I had started to lose hair but then it regrew quickly.. I chock it up to hormone changes. My testosterone from the earliest times was nonexistent, estrogen perimenopausal levels. Never had an adams apple, and my bones are definitely female shaped. Small 36A/b boobs from the age of 13 on. HUGE freakish areolas since then too. Avoided taking off my shirt...ever... in public.
So far swyers syndrome variant with mixed gonadal dysgensis is my presiding diagnosis. I'm going to see a geneticist monday & get a AMH/LSH/FH/InibinB/estrogen levels OFF of hormones a month now as well. I've been warned by mutliple docs the geneticist might not have answers.. so I understand this. I also have a large mega cisterna magna / posterior fossa arachnoid cyst that appears to be congenital.. and possibly related to my disorder of sexual development, though only I apparently see the connection (despite it being mentioned multiple times in .gov literature).
For what I was born with internally here are pics of it.. Do they know 100% what it is? Nope. But its suspiciously uterine shaped & cramps like one. Just probably not attached.. other than excessive mucus and scant blood that's the most period I ever get.
https://imgur.com/a/m2SYbhttps://imgur.com/a/TEX6oHip angles
https://imgur.com/a/ppOy0 .. Even though its 120 degrees I'd still say its more androgenous shaped than either masculine or feminine overall ... the crests appear to be half way inbetween (to me) at least.. though the MD looking at it didn't raise any alarms seeing it, so I'm assuming he assumed it was 'normal' for a female.
As far as transition, I got my messed genitals fixed back in 2001. Long time ago, very unpleasant memory.
Quote from: alaskagirl on April 13, 2018, 03:08:37 AM
Hi Doreen,
Sorry to hear that you've been struggling to get a diagnosis! I know that can be a really frustrating process. I was screened for multiple other conditions before PAIS was raised as a possibility.
As for diagnosis, the presentation for PAIS/MAIS can be quite variable, so it's often difficult to diagnose. In my case, it was a matter of putting together all the pieces. I have a eunuchoid body shape with female curves and minor gynecomastia. My voice never fully dropped, and my body hair is quite sparse (although both my father and my brother are extremely hairy). I am genetically predisposed to baldness, which began for my father and brother around 20. However, at 25 I still have a full head of hair.
I was tested for Klinefelter's, but I'm not XXY. My testosterone levels were normal-high, so it appeared that my body just wasn't responding fully to androgens. The strongest indicator was a scrotal ultrasound I had due to a size discrepancy, which revealed that I had calcium clusters in my testicles (microlithiasis). Apparently this is uncommon and often associated with infertility or AR-gene mutations. Finally, the doctor who examined my genitals noticed that my penis had "clitoral features" like labia minor folds.
May I ask what other conditions you've been diagnosed with? Those symptoms sound quite interesting, and probably more helpful than anything during the transitions process!