Any other PAIS/MAIS girls out there?

[alaskagirl]

Is there anyone with partial or mild androgen insensitivity syndrome who wouldn't mind sharing how the condition impacted their transition? I've noticed some pretty rapid effects from HRT (body/facial hair thinning, visible muscle loss, facial changes after three weeks), but I'm curious to hear about others' experiences.

[Jessica]

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[Doreen]

Is there anyone with partial or mild androgen insensitivity syndrome who wouldn't mind sharing how the condition impacted their transition? I've noticed some pretty rapid effects from HRT (body/facial hair thinning, visible muscle loss, facial changes after three weeks), but I'm curious to hear about others' experiences.

I'm curious how you were diagnosed as PAIS/MAIS.  I've had that diagnosis thrown about a time or two at me, but it doesn't quite fit.  I never had body hair or muscle mass, most of my body was in female territory in the first place.. HRT just enhances it mostly.  As far as rapidity? I notice I don't feel as tired on HRT generally, and my skin is softer (more elasticity, not necessarily more feminine though.. its generally already that, and always was.). 

Hope this helps.  I never fit into any pattern sadly enough.  We'll see if this new geneticist appointment offers any insights.

[alaskagirl]

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!

[josie76]

My doctor thinks MAIS is likely. My insurance will not cover the gene sequencing test for AR mutation and he thinks it is not "medically nesecary" as there is no treatment aside from HRT which I get from my endocrinologist. I also had some gynocamastia long before starting HRT.

Basically I have female bone shapes which he said is first trimester prenatally formed. My knee and elbow joint profiles are feminine. My sacroiliac joints are and my pelvic bones sit in female positions. When my doctor saw my lower abdominal CT he thought they sent the wrong scans. They didn't.
My voice did drop but my adams apple never really exposed itself.
I didn't grow belly, back, or chest hair until nearly 30. I didn't know the difference then but I had a female pubic hair pattern until then. I did grow facial hair.
My skull has minor maculization apparently. My mandible did not flare out. I have the supraorbital arches but not a major brow ridge beyond those. My zygomatic processes stop before the ear canal entry.
I have a split penile raphe and was born with a partly unfused perineum raphe.
From the CT scans, it appears as though I have a gap in my pelvic floor muscles that is normally covered in males.

In the end no body really has a good answer. From looking it up I have found there are 600+ known mutations of the AR gene with differing effects. Only getting that expensive gene sequencing test would tell me for certain.

[Doreen]

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/m2SYb
https://imgur.com/a/TEX6o

Hip 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.

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!

[josie76]

Doreen, from what I've learned your bones definitely fit primarily female markers. Your ilium do not flare outward much. That would be more common masculine but your sacrum width and the sacroiliac joint look female. Your ischium are positioned verticle and the subpubic angle is very much in the female range. Also pretty clear is your acebelium (hip sockets) clearly lean forward which is female also. On any anthropological scale your bones are definitely female looking.

I think you are correct. You look to have an unfully formed uterus. Normally it should lay forward over the bladder. I'm having trouble figuring out some of those scan slides. It looks like your bladder is right above the pubic bones but it appears to have something on top of it?

[Doreen]

Doreen, from what I've learned your bones definitely fit primarily female markers. Your ilium do not flare outward much. That would be more common masculine but your sacrum width and the sacroiliac joint look female. Your ischium are positioned verticle and the subpubic angle is very much in the female range. Also pretty clear is your acebelium (hip sockets) clearly lean forward which is female also. On any anthropological scale your bones are definitely female looking.

I think you are correct. You look to have an unfully formed uterus. Normally it should lay forward over the bladder. I'm having trouble figuring out some of those scan slides. It looks like your bladder is right above the pubic bones but it appears to have something on top of it?

The bladder was well distended on the left photograph of the MRI, had drunk too much coffee before the MRI... my own fault.  The uterine like structure is to the right of it, the intestines above the bladder. directly beneath is the pubic bone. You are right in that its probably an unformed uterus.. and its causing growing pains the main reason I had all this stuff looked into in the first place.  Ironically it hurt once a month before, but I assumed it was constipation..took prune juice and a couple days later the symptoms receded.  In retrospect I feel like an idiot.  They initially described it as a 'tilted' uterus meaning leaning backwards towards the intestinal track, not above the bladder like it should be.

[HughE]

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.

Sounds fairly similar to me. Was your mother given any kind of hormone treatment while pregnant with you? Exposure to external hormones can disrupt the process of sexual development in an unborn baby, and cause both physical intersex-related anomalies, and intersexed or opposite-sexed brain development. Many of us older MTF and transfeminine people were prenatally exposed to an artificial estrogen called DES, which was a commonly used treatment for preventing miscarriages up until about 1980.

[Doreen]

Sounds fairly similar to me. Was your mother given any kind of hormone treatment while pregnant with you? Exposure to external hormones can disrupt the process of sexual development in an unborn baby, and cause both physical intersex-related anomalies, and intersexed or opposite-sexed brain development. Many of us older MTF and transfeminine people were prenatally exposed to an artificial estrogen called DES, which was a commonly used treatment for preventing miscarriages up until about 1980.

Oh I had my suspicions.. very BIG suspicions.. my father was in prison when I was born, high time of stress for my mom (per her), recent fracture of her spine (allegedly), and I'm pretty sure she might've been 'lonely' as I was #4.  I asked her about DES and she vehemently denies being under any sort of undue hormonal influence.  In fact she so denied it it nearly confirmed that she was probably on something.  I'll never know in the end, however.. she's one to take her secrets to her deathbed.

[DeidraDee]

Hi, DES was also put in prenatal vitamins so she may have taken it and never have known. I relate to you all in 10 years and 25 doctors later all I still have are suspisions. I have been diagnosis as a moasic form of Kleinfelters with PAIS and possible missing twin syndrome only firm conclusion was 99% sure I was exposed to DES. I have concluded that either doctors do not know or prefer not to know. I will spare everyone the full organ recital other then at age 58 my spine broke from severe osteoporosis and the only thing that has helped the condition has been estrogen. I will strongly urge anyone in this camp get a bone scan please because osteoporosis has many complications. Please feel free to ask any questions you have I will gladly help if I can.

[josie76]

And DES is not out of the question with me either. My mom was on a prescription that she was told were vitamins. She was only 18-19 when carrying me and her OB was an older man at that time. It was 1976 so while DES had been "unlabeled" for miscarriage at that time, many older doctors did not read the FDA information bulletins.
Its possible the androgen receptor blocking effect of DES could explain my bones, genital anamoly and trans brain but then I still wonder about my pubescent and adult development. Maculinzation was delayed and not very complete.

For that I am thankful!

[Doreen]

And DES is not out of the question with me either. My mom was on a prescription that she was told were vitamins. She was only 18-19 when carrying me and her OB was an older man at that time. It was 1976 so while DES had been "unlabeled" for miscarriage at that time, many older doctors did not read the FDA information bulletins.
Its possible the androgen receptor blocking effect of DES could explain my bones, genital anamoly and trans brain but then I still wonder about my pubescent and adult development. Maculinzation was delayed and not very complete.

For that I am thankful!

Yup my mother admitted taking vitamins too because she was 'low on calcium' per her.. also her excuse for why my teeth were fragile since day 1.  I also had osteopenia, and so ... on that note back on the calcium I'm supposed to be taking lol. I drink tons of milk but apparently I'm immune to its calcium boosting effects now. (I also get plenty of sunlight as I have a garden I work in). 

I don't consider myself as having a 'trans brain' though.  I have a female brain, with unfortunate male socialization up until 20.  We were socially isolated off & on being homeschooled & I remember playing with the girls until 5th grade, then playing with noone.  SO while I might say male socialization, was it? IT was more like a hermitage until I moved on. 

The doc ruled out PAIS because.. well no testosterone.  If I actually had testosterone, then he might have considered it (as your body doesn't respond to t*, but its still there).  Which is fine because generally PAIS doens't have uterus or fallopian tubes/ovaries or w/e either. SOMETHING is cramping the crap out of me daily downstairs in the exact same location.  Its annoying to downright painful, and its been there for a couple years now doing this.  I sound preoccupied but you would be too, trust me.  It is no fun. 

[josie76]

Doreen, Oh I believe you about it being so annoying to be a preoccupation.

I also have a female brain but my male parts functioned so I guess I am more transgender than anything. In the end its all just nomenclature. My forced male socialization began upon 1st grade. In kindergarten my bestie was a girl. After first grade started in another school I learned quickly what I was required to be to not get picked on or beaten up and how to hide in plain sight in the background.

Appearently I had plenty of T starting in teenage years it just only slightly affected me though. Here's another weird thing, between 30 and 40 years of age my testes shrank a cm length and girth. I know this because I had testicular pains on and off again over the years. They did a sonogram at 30 and found nothing and again year before last. Still found nothing wrong to cause pain. Now that I am transitioning I had hoped the pain would be enough reason for an orchiodectomy with insurance coverage. The doc said no dice on that.

[Doreen]

Doreen, Oh I believe you about it being so annoying to be a preoccupation.

I also have a female brain but my male parts functioned so I guess I am more transgender than anything. In the end its all just nomenclature. My forced male socialization began upon 1st grade. In kindergarten my bestie was a girl. After first grade started in another school I learned quickly what I was required to be to not get picked on or beaten up and how to hide in plain sight in the background.

Appearently I had plenty of T starting in teenage years it just only slightly affected me though. Here's another weird thing, between 30 and 40 years of age my testes shrank a cm length and girth. I know this because I had testicular pains on and off again over the years. They did a sonogram at 30 and found nothing and again year before last. Still found nothing wrong to cause pain. Now that I am transitioning I had hoped the pain would be enough reason for an orchiodectomy with insurance coverage. The doc said no dice on that.

Maybe you just didn't complain enough   I agree about nomenclature hehe.  See the thing is I'm married to a trans partner, she identifies as m2f, kind of the typical life experiences expressed here in this forum.  The problem I always had is she'd compare to me all the time... and 90% of her life story didn't have any parallels to mine.  My hips are designed to easily cross legs.. hers are not.  My bones are thin pretty much forever.. hers are not.  I have chronic cramping, she just rolls her eyes.  Not terribly empathic.. though I'm not either at times.  "Well guys have this..." Um.. I never did??

I am glad to have come back in contact with some of my older girl school friends from the past.  For me its a tricky subject as I'm definitely 'stealth'.. whatever that word means.  I don't explain to people docs can't figure me out yet.  Its too ambiguous for me to even broach the topic, so why bother.  I just present as me, a girl.

Different doesn't mean better, it just means different.  In reality in many ways I have it worse at this point.. a point she rapidly points out.  In the end, accept that each of our paths are unique  

[josie76]

True everyone has very different experiences.
I also have the fem pelvis. The one trait I lack is the further spreading of mine since I didn't have estrogen in pubescent years. My hips sit mostly under my iliac crest. But at the same time they measured my CT and every point from pelvic inlet to outlet is greater than 10 cm front to back, side to side, and sacrum to pubic bone. Growing up I was very conciously of my big pelvis and narrow chest. I wore larger than needed shirts to hide myself. My bones eventually grew larger like a man but I retained my mostly hourglass shape. My acebelum socket diameter however is way too small for a 5-11 man but fits right in for a 5-11 woman's frame. My shoulder sit high but could be years of bad posture didn't help that. My hands are large but smaller than many men's however my wrists are slender enough to fit comfortably women's watches and bracelets.  I don't fit as stealth because of my overall size but now a year on HRT my muscle changes have been enough that I do get a casual pass with no makeup or anyyhing.. I get her and she from the rear all the time  . I can now walk right past another woman in the store and usually don't get a moment of a glance. Also neither women or men keep their distance. Kind of annoying with men as they just expect me to stop unless they "allow" me to go first. Sometimes my nose shape and chin being longer do give me away but it seems being middle aged people expect less as far as beauty perfection goes. OK older guys looking at me when they walk past the car, that one creeps me out. Not looking at me like a trans freak, you know the look. 

Life is crazy. I'm just glad I finally figured out it is alright to be myself. 

[Doreen]

True everyone has very different experiences.
I also have the fem pelvis. The one trait I lack is the further spreading of mine since I didn't have estrogen in pubescent years. My hips sit mostly under my iliac crest. But at the same time they measured my CT and every point from pelvic inlet to outlet is greater than 10 cm front to back, side to side, and sacrum to pubic bone. Growing up I was very conciously of my big pelvis and narrow chest. I wore larger than needed shirts to hide myself. My bones eventually grew larger like a man but I retained my mostly hourglass shape. My acebelum socket diameter however is way too small for a 5-11 man but fits right in for a 5-11 woman's frame. My shoulder sit high but could be years of bad posture didn't help that. My hands are large but smaller than many men's however my wrists are slender enough to fit comfortably women's watches and bracelets.  I don't fit as stealth because of my overall size but now a year on HRT my muscle changes have been enough that I do get a casual pass with no makeup or anyyhing.. I get her and she from the rear all the time  . I can now walk right past another woman in the store and usually don't get a moment of a glance. Also neither women or men keep their distance. Kind of annoying with men as they just expect me to stop unless they "allow" me to go first. Sometimes my nose shape and chin being longer do give me away but it seems being middle aged people expect less as far as beauty perfection goes. OK older guys looking at me when they walk past the car, that one creeps me out. Not looking at me like a trans freak, you know the look. 

Life is crazy. I'm just glad I finally figured out it is alright to be myself. 

Ya the guys staring at your butt or just unabashedly slipping a glance 50x, while seemingly flattering at first can get annoying to downright creepy.  I must put out strange vibes because I'll get women doing that too from time to time (though definitely not as frequent).  Either that or they're lesbians /bi to begin with.. because other than my height, there is very little in me that shouts masculine.   

FFS for me did wonders.. part of me forever thought I had to have SOME androgen influences, but then one look at my sister (though admittedly she also had PCOS thus high T* levels too), tells me its alot more likely my 'androgynous' face had alot more to do with my familial inheritance (not saying genes because that's a whole new ball game as it is) than androgen influences.  Still, maybe I did have it at one time.. there's no way to know what early childhood had in store for me at this point. I'm just glad at this point I have nothing but estrogen floating in my veins.

I have lost muscle mass because I know that my shoulders used to be a bit snugger in a dress I bought 15 years ago ... now its very comfortable. 

[josie76]

Sometimes I don't feel like going into a store when my SO is just getting a couple of things. I'll wait in the car. It seems like its guys older than me that spend time looking at me. IDK just a new thing I have never experienced before. Seems like another good sign but still gives me the willies. I guess I have seen guys look at women like that before. They just never looked like me that way before. 

I would love to be able to afford FFS but for now that is no option.

I'm going to see another urologist tomorrow morning. I have my sonogram CD's and what anyone else has ever done for the testicular pain, which was nothing but amitriptyline that helps reduce nerve pain sensations.

[josie76]

Doreen you were right, I just hadn't complained enough. 

I went in and explained the whole situation to the nurse. I brought my previous urology history. She asked if I had any other diagnosis. I told her my primary doc thought maybe MAIS but didn't see a need for gene testing.
This doctor looked at the sonograms before coming in the exam room. We discussed the pain and the previous medication for the pains. We talked about an orchiectomy. I told him if the pain and shrinkage was enough to get insurance coverage I really wanted it done. When he asked me to stand to pull down my pants he agreed MAIS is likely based on my body type. He noted the testes were very small. Did a physical exam which triggered a 15 min pain episode for me. Yeh not fun. He said he thought the pain and past history was enough to validate the orchi. I was honestly surprised. He left to talk to his office manager about pre-cert and scheduling. About 15-20 min later the nurse came back in and told me they had a date set up for next week to do it. I started crying right there. We talked for another 20 min or so before I left.
Best doctor visit of my life! 

[Doreen]

Doreen you were right, I just hadn't complained enough. 

I went in and explained the whole situation to the nurse. I brought my previous urology history. She asked if I had any other diagnosis. I told her my primary doc thought maybe MAIS but didn't see a need for gene testing.
This doctor looked at the sonograms before coming in the exam room. We discussed the pain and the previous medication for the pains. We talked about an orchiectomy. I told him if the pain and shrinkage was enough to get insurance coverage I really wanted it done. When he asked me to stand to pull down my pants he agreed MAIS is likely based on my body type. He noted the testes were very small. Did a physical exam which triggered a 15 min pain episode for me. Yeh not fun. He said he thought the pain and past history was enough to validate the orchi. I was honestly surprised. He left to talk to his office manager about pre-cert and scheduling. About 15-20 min later the nurse came back in and told me they had a date set up for next week to do it. I started crying right there. We talked for another 20 min or so before I left.
Best doctor visit of my life! 

Oh that is so amazing to hear, I'm so happy for you that you managed to get this!  All my whining and complaining got me shrugs, "I don't know", or "You're just a magical unicorn" stuff.  I did manage to get an order for flexeril pft.

In sincerely hope you get pain resolution with this