Looking for help...

[Moonsault]

Hello, I am a 17 year old male with what I assume is PAIS (Either grade 1 or 2, according to the aissg site chart). I have been to a doctor twice regarding this issue and had my testosterone levels taken, and it is on the high side of normal. This is obviously incongruous to my body, which is feminine in some aspects ( e.g. gynecomastia, lack of beard growth, slightly feminine bone structure; however my penis is on the smaller side of average, and I do not have hypospadias). The doctor dismissed my concerns of PAIS as merely me not maturing, saying that I will masculinize in time. However this is ridiculous, as he did not even know what AIS was, even though I have seen him twice within a span of 3 months (he didn't even bother to look it up between visits, saying that there are "a lot of things on the internet that aren't proven"). However, I can say with much certainty that I DO have some sort of genetic gender issue, and with my testosterone levels being on the high side of normal I think it is safe to assume that it is PAIS. My parents do not know I have AIS, I told my mother but she took the doctor's word and assumes I am normal. PLEASE, if you could offer any advise as to what I should do in my current situation I would be most appreciative. I identify my gender as male, and want to seek a course of action so my phenotype can be in accordance with such. I live in Southern California by the way. Thank you VERY much for taking the time to read this :). I apologize for any convolution.

[JOS]

Welcome to BLO

I guess it's likely to be tricky to get your doctor to refer you?

Also, could you find out how fertile you are...? the doctor may be willing to at least look into that?

Since you have clearly visited the AIS support group websites... the UK one has a leaflet you can print off to give to members of your family/friends... if your doctor insists AIS is made-up perhaps they need a copy too.

of, course... they could be right, that you are just a "late developer", sorry to sound patronising but 17 isn't that old in terms of male development.
but it seems so odd that the doctor claimed to know nothing about AIS... just that would get my suspicious mind whirring
... but don't panic yet, is all I'm trying to say... there really may be nothing wrong that time won't fix

sorry I haven't really been able to help much, but it strikes me that your first obstacle is going to be getting a doctor who doesn't just dismiss your fears out of hand... you may need to see someone new?

Jos

[fraulein_Maria]

[QUOTE=JOS;22244]Welcome to BLO

I guess it's likely to be tricky to get your doctor to refer you?

Also, could you find out how fertile you are...? the doctor may be willing to at least look into that?

>>> i'd like to second this advice. AIS'ers either partial or complete do not produce a single sperm cell .... not one. therefore, what passes for semen in a PAIS'er will not be milky white, but clear. this is also true of other IS conditions (and of other types of male infertility). Bringing up the fertility issue would be a back door way of getting him to investigate if he is the only doc you have access to.

good luck

[Moonsault]

Well, my semen is milky white (not clear), so does that rule out AIS?

[fraulein_Maria]

[QUOTE=Moonsault;22292]Well, my semen is milky white (not clear), so does that rule out AIS?

>>> disclaimer ;) since i'm not a doctor, i'm not qualified to make a medical diagnosis".

it means that AIS is unlikely. for your own peace of mind, you could put a drop on a slide and see the swimmers if they are there ;) remember to spread it thin and add a dye before slipping it under a microscope though.... all stuff easily gotten from a high school or college bio lab :)

there is another explanation (actually a few) for a high androgen level but a "feminine" body.....

androgen blockers.... either medicinal (spironolactone most famously... but most of the prostate drugs and some antifungals)
or environmental.... there are chemicals that do nasty things to reproductive systems...usually meant for bugs.... but that can and do wind up in the water and the food supply.

i'm sure there are others here more knowlegable on the topic than i, so i'll wait for them to chime in.

[Moonsault]

Okay, I will look into this. Thanks all for the support / advise thus far, I am MUCH appreciative. :D

[PAISWoman]

Okay, I will look into this. Thanks all for the support / advise thus far, I am MUCH appreciative. :D

I went through the same situation that you explain except I didn't know my hormone levels and I didn't know if I was fertile or not. My doctors told me the same thing your doctor did which was that I would grow out of it.

If you in fact don't have but very little body hair and you in fact are having some breast development, on the small size of the penis size, my advice is to keep pointing out these factors. If possible go see another doctor until you find one that is willing to hear what you say.

As far is being infertile to the point that your ejaculate is clear, mine was never clear until I began estrogen treatment. Since you identify as male, I'm sure that you're not going to start taking estrogen. I would recommend Anti-mullerian test as this will test your bodies reaction to androgen. Although it is not a conclusive way to arrive at a diagnosis, it can suggest that if you have some type of hormonal issues going on within your body.

If all else fails, try to see if your doctor can prescribe testosterone treatment. If you have AIS, you will have to have higher dosage than normal since your body is not tolerant to testosterone as much as someone that is sensitive to androgen.

If you want to talk more, just pm me as your story sounds so much like my own. Although, I am female now, I do understand what you are going through and it can be difficult when you have doctors not willing to hear what your complaints are.

[spacegirl]

Even fake ejaculate (congealed vaginal juices with no sperm at all) often isn't clear. More mucus colored.

[Moonsault]

Well it has been a few months and PAISWoman still hasn't replied to my PM, anyone else have any advise on the matter? Also I have heard that one can have AIS and still be fertile, so is that really a reliable method for diagnosis?

[Aseras]

Pais is tricky stuff. I know when they were checking me out, they wanted to know a lot about my family ( since many things are inherited ) and there were lots of tests for proper enzyme function. PAIS or any number of other Intersex conditions can cause very similar conditions. I know with AIS they are looking for testosterone levels being high as well as incomplete masculinization. PAIS can run a huge spectrum and there are very few doctors with the expertise to really classify it for mostly male PAIS with just reduced functionality. Pais also can be a catch all, as many doctors just dont look for certain other more rare problems as well, like 17BHSD deficiency or a 5ar deficeincy both of which can cause similar conditions.

I don't have AIS. My T levels are very low. But I got to have all the tests done for it. There is genetic testing available for known mutations in the androgen receptor, but they are not all inclusive.

[Olim]

Also I have heard that one can have AIS and still be fertile, so is that really a reliable method for diagnosis?


I heard about that too. You can actually check with docs. Ask yr family doctor to refer to urologist/andrologist, who can make semen/sperm analysis. I guess it will work. But I am not sure of the reliability of the test, never had experience.

[fraulein_Maria]

Also I have heard that one can have AIS and still be fertile, so is that really a reliable method for diagnosis?

>>> you didn't hear it from anyone who actually has AIS or someone who treats it. Testis left in the abdomen for years get fried and do not produce sperm. No exceptions.

I'll assume for a moment that your testis decended (or were made to decend) in a timely fashion.

you've avoided testicular cancer so far, but if your really PAIS the possibility of you getting it is rather HIGH..... and its the sperm producing cells in the testis that become cancerous.

So, you might tell the doc you've felt a lump in your testis.