Conflicted About Possible Condition

[tori319]

I'm still not on hormones because my endo keeps wanting to test me.I don't know if I've mentioned this but the endo found that my t levels were abnormally high. He kept questioning if I was taking anything but I told him I wasn't. So now he found that my body  might be resisting the testosterone and therefore its overproducing. he found that my genitals are normal but that my chest has more breast tissue than is normal for a male, though I don't have Gynecomastia. He believes that I might have testosterone resistance, which I later found out is called androgen insensitivity syndrome. I guess a part of me hopes I do have it  so I can have more of an argument for why I'm trans when I tell my mother(no, I still haven't told her) and other family members. Another part of me doesn't want it because it might cause trouble for me when I transition.

[tori319]

Well thanks for all the support.

[Cruelladeville]

I was diagnosed with a 'moderate' level of AIS.... Tori

And it did in my opinion help me with a later transition, than I would ideally have liked... in my mid twenties....rather than in my teens...

(Having a uber-catholic mother didn't help)

Gender/sexual identity... inter-sex gay, lesbian et al...is a very complex subject...physical/pyschosexual/gene and inter-uterine anomaly based

The scale from typically male to female...is a very wide one... with more than you'd imagine in between...

Sadly the world in general and 'religious' nuts in particular only accept the bi-polar male + female, black + white model....

This is in fact one of the greatest lies out there...

Science has know this for a long time.... but then many prefer the dogma over the facts?

[Britney♥Bieber]

I've never heard of that. 

Good luck though

[spacial]

I read your poste this morning Tori, but decided to wait till anyone else, with more experience of this condition, responded.

It just seems a little unlikely since there are no problems with the male genitals. From what I can gather, it usually results in incomplete development of male genitals so the patient appears, physically, female.

But another problem springs to mind, if you try to use it to convince your mother. It's apparently treatable.

[rejennyrated]

I've never heard of that. 

Good luck though

Yes you have Britney - I am borderline grade two/Grade three partial AIS.

In my case there actually were some minor genital abnormalities (hypospadias) but I was reliably informed by the doctor that diagnosed me that in the lower grades this is in no way mandatory.

So, on the contrary, from direct knowledge, i can tell you that it is possible Spacial

[Janet_Girl]

Getting tested will help on making HRT choices.  I have never been, but then again I have never exhibited any symptoms of anything.  Letting them test you might reduce the need for some things.

[spacial]

Yes you have Britney - I am borderline grade two/Grade three partial AIS.

In my case there actually were some minor genital abnormalities (hypospadias) but I was reliably informed by the doctor that diagnosed me that in the lower grades this is in no way mandatory.

So, on the contrary, from direct knowledge, i can tell you that it is possible Spacial

Thank you Jenny.

When I come across medical issues that I'm not aware of, I try to find out as much as I can. Envitably, there are the 'Patient Information Sheets', which are generally all about reassurance. Useful though lacking information.

Then there are the places that try to go into more detail, but are often written by people who can be a littel inaccurate, (shall we say?).

Then there's the places that go into enormous detail, cross refrenced. These are generally the most useful but some of the biomedical detail gets rather tedious.  (Biomedics are not my thing!!)

It is an interesting issue.

I did find one site, sponsored by the NHS which listed six categories. Only the first category allowed for visiably normal male genitals. Though the patient is said to be sterile. But it also claimed that other characteristics would be typically male. The presence of slight breast tissue seemed to rule this out. But I thank you for your contribution here Jenny.

I do hope Tori knows that I and others only wish her well and success. My concern was that, with her mother being so negative, possibly looking for anything to grasp onto, rather than accepting reality, she might ignore the transision potential and claim that this can be treated.

[AmySmiles]

My therapist thinks I have the same thing.  I'm not sure what to think, but I'll be getting tested for it in March.  When I got my initial hormone levels taken, my testosterone level was around 700 (pretty high) but my estrogen level was also high.  That, coupled with my very non-aggressive demeanor, lack of a deep voice, tiny adam's apple, shoulder-width hips, and small amount of facial hair were apparently enough to merit testing.  For what it's worth, she told me another patient of hers was tested and came back with positive results - and now her insurance company is paying for surgery.

If I come back having the condition I'll let you know.

[Nigella]

Hi Tori,

I too had this and I'm also in the same boat as Jenny, she prob wont mind me saying as I've already discussed this with her on another occasion. It was undiagnosed until my issues of gender dysphoria could not be contained any more.

My levels of T were also high, I had small breast growth, I had some other issue too which was dealt with while having GRS, lol.
The good news is you prob are receptive to HRT and estrogen levels as I am. My endo had a struggle to get my T down before surgery but they did in the end but only about six months before surgery so my 18 months of HRT before surgery was interesting. My T was high and yet the estrogen was in a normal female range and was having a real affect.

Stardust

[CaitJ]

With informed consent, there's really no need for your endo to test you. He already knows that your T levels are high, so there's no harm in putting you on anti-androgens to bring it down, regardless of whether or not you have AIS.
There are a number of factors which could cause a spike in T levels, only one of which is AIS.
Simply explain that you don't care about your high T levels and possible AIS, because it doesn't change the fact that you know you're trans. Neither will affect your transition in any measurable way.

[Britney♥Bieber]

Yes you have Britney - I am borderline grade two/Grade three partial AIS.

In my case there actually were some minor genital abnormalities (hypospadias) but I was reliably informed by the doctor that diagnosed me that in the lower grades this is in no way mandatory.

So, on the contrary, from direct knowledge, i can tell you that it is possible Spacial

Ohhhhhhhhhh okay I get it now

[tori319]

@spacial
Thanks but my mom isn't negative about it I just still fear that she could become so if when I tell her. I'm not really grasping because I don't really think that if I do have it that it has anything to do  with me being trans. I guess I just feel that maybe it would help me being excepted better by my family.

@CaitJ
He said that it would affect the way he lowered it and that it is best if I wait until the results.

Thanks for all the response everyone. Regardless of whether I have it or not I know who and what I am this doesn't really change things.

@stardust&rejennyrated
The endo said that it was genetic , did anybody else in your families have it?

[Nigella]

@stardust&rejennyrated
The endo said that it was genetic , did anybody else in your families have it?

Hi Tori, I don't really know of anyone. I'm an only child, my mum however lost two children before birth so there could be a connection in that her body rejected something that was developing wrong. I know wrong is probably not PC but you know what I mean. I'm glad I'm alive and so are my mum and dad, lol.

Stardust

[Cruelladeville]

*I'm an only child*

Me too Stardust... and my mother's uterine complexities caused her multiple miss-carries ever after... it brought a lot of grief to the marriage which cracked eventually.....

Some years back - it took me an age of delicate questioning - to try and fathom some sense of what transpired while she was carrying me... to term. To say that this is a highly emotive and no go topic for her... would be the ultimate understatement....

 

Ironically she has blamed my condition 'firmly' on my (deceased) fathers shoulders - claiming that due to her families extreme catholic stance and her upbringing, the chemistry pessaries my father procured early on in their marriage -  used to stave off pregnancy -  meant for months she wasn't even aware of being pregnant at all... with me!!

Catholics adhering to faith doctrine of the 1950s era you see shouldn't have been having sex for fun/enjoyment at all, contraception was a no go... coitus growing family making (new Catholics) was what it was really all about....

My overall feelings now are that there are a whole host of complexities, disorders, anomalies, mixed dysgenesis and brain-sex imbalances... physical, chromosomal and psychological - all bends that generate a whole colourful rainbow range of options, ticks and quirks....

The scale is very wide and varied....

Do I need AIS as a comfort crutch for what has transpired with me?

No not at all....

But does it go some ways as to help me define and fathom my 'difference' ?

Yes I think it does...

However society and especially religious driven agenda ones... prefers the lie that life strictly = man & woman... male & female

Preferably with the man coming first...

[rejennyrated]

@stardust&rejennyrated
The endo said that it was genetic , did anybody else in your families have it?

Yes my family is littered with people with both Androgen insensitivity on my fathers side and gender nonconformism (on my mothers side).

Genetically I had no chance!

Both my first cousins clearly suffer from a low grade form of AIS and are in one case completely sterile and in the other case partially sterile.