Look alike syndromes

[shelly]

I would like to weigh in on something someone said about "look alike syndromes".

It would seem that I have a lot in common with AIS, and when I went to the endo he kept asking me how my body hair was and how much my beard grows. I could tell he wanted to "AIS" me and get me out of there.

The problem is: I have a female level of estrogen AND a male level of testosterone. Estrogen blocks testosterone from being fully effective and testosterone blocks estrogen from being efffective. Thus, m2f's cut t and take e to get the desired effects.

So basically, even though I have a totally normal male t level, I have never gotten the full benefits of it because e has been blocking it's efficacy. Thus, I have never felt like a "normal male", because hormonally I have never been one.

It is so easy for doctors to look at me and say, "normal male, gynecomastia with transsexual tendencies", but the truth is, if you never have had the full effect of t working in your body, and you would have to be on drugs the rest of your life to block e, are you a normal male?

I also can't say I am a normal female, because transversely, t has been blocking the full effects of e in my body for years.

also, I do have the monthly cramps (and I keep a really good calendar of the pains)

If I had not pressed the doctor hard to test my hormones, I would have slipped through the cracks again, and just gone out of there with a diagnosis of "transsexual/gynecomastic" attached to me. This is very distressing for me because of my religious background and social circle. It also distresses me that people don't give enough credit to the psycological effects of sex hormones. They DO influence your brain and emotions. Don't beleive me, spend 5 minutes with a woman on her period when her estrogen has plumetted. Ask someone with KS if they feel more confident after starting T. I know that I feel better in the middle of the month, when my estrogen has climbed back up there. Yet for all the estrogen I have, the doctors say I only have feminine tendecies because I am a transsexual?

I don't get it. Why then, do they give HRT to normal women who have gone through menopause, and to men during andropause? It ISN"T soley to prevent osteporosis, it is to provide some mental relief.

As it is, even with hardcore medical proof that I am at least 50% female hormonally, some of my old friends and certain family members still say they think I'm nuts, even after they see the pictures of my body as it really is.

It is sooooo whack, how people's prejudices can make them lose compassion and get so off center.

I know CAIS girls can take offense at this, but I wish I was a little less ambiguous like them. At least they don't have to explain dressing like a female to anyone. And that is not to discount the pain of having to adopt, nor some of the issues of having to dialate and such. I know CAIS, must be at least a little bit of a mental tweak. That wikipedia article where Leonard Sax is quoted as saying AIS, and KS are not forms of intersex kills me. He should have to feel what it is like to have a body that doesn't conform to your chromosomal makeup.( and I don't even know if I am fully xy, as this has not been tested, again...money, and they'd just call me a tranny anyway) Bozo. I spent 6 months going to a doctor to see if I was intersex, and he kept telling me "I don't see anything female in you", (take a look again at my picture) and then he proceeded to measure my breasts, and proscribe estrogen blockers for someone with "no intersex condition". I only found out after 6 months that he doesn't think anyone is intersexed unless they have "ambiguous genitalia". (CAIS girls, how do you feel about that one?) and the thing is that this guy is an "expert", one of the better endos in Southern Ca.

My new doctor wants to do an internal scan of my pelvis to find the source of the estrogen, but to be frank, until I am out of school, I can't afford it. It is good to know that I am not delusional, and that at least ONE doctor knows there's something "different" about me.

I would really like to make friends with a couple of the girls on here as I have recently decided that I cannot live with two sets of sex hormones raging in my head, and started taking anti-androgens. (again, the other doctor said I'm "not intersexed" but this one says to fully feminize, I only have to cut my T because my estrogen is in a fully female level. HUH?) It's like a psycic game of ping pong. One hormone hits you and says "male", the other one hits back and says "female". You go through the line at the drive through and get called "m'am" and ten minutes later someone calls you "sir", you answer "yes, thank you", to either one because in the end you realize these poor people are just as confused as you are.

Since, I have permanent breasts, and undermasculinized features, I have decided to get corrected to look unambiguously female. It is just easier. To look male I would have to have breasts removed and go on estrogen blocking drugs for the rest of my life or find the ovaries and have them removed, neither of which are covered by insurance. To look female I basically have to take anti androgens for a few years and then do something permanent to my testicles. A leading facial surgeon said my cheeks, thyroid cartilage (adams apple), and lips are well within the normal female measurements. My forehead needs a little conturing and my jaw muscles could be reduced a bit.

It is mostly that all this estrogen all my life has influenced my emotions and brain. even if they corrected me to look male, I will still have very real female traits "between the ears" and would just come across as a gay guy anyway. That isn't any way to get respect in this world, at least where I live.

So any girls looking for someone to post with, I am really going through it, and would love to chat. I am not one of the "I hate doctors and woe is me crowd".

Thank you in advance

M

[uriela]

Hi Shelly,
If the estrogens have affected your brain, so have the
androgens. You would think so, wouldn't you?
Dawn

[shelly]

Hi Dawn,

You would think so, but it is not a full dose of androgens, because estrogens block their ability to perform.

It is more than the estorgens effect on the brain, it is their effect on the body. look at my picture. How could ou cover that up in public? I feel so vulnerable every single time I go out the door. and yes, I do get called m'am by others.

[uriela]

Shelly,
Have you tried blocking one or the other? I think you have. Which way do
you get relief?
Do you get irritated by being called "Ma'am"?
Do you feel allied to one camp more than the other? Or, as some on this
forum have expressed, do you prefer to be considered neither?
Other people's opinions are other people's opinions.

I get "sirred" every once in a while, mostly on the phone, but am quick to
straighten them out, because I don't like it.

[uriela]

How could you cover that up in public? I feel so vulnerable every single time I go out the door. and yes, I do get called m'am by others.


There are ways. If you want to present as a man, you could do a bit of
breast-binding, or wear loose clothes. If boobs are embarrassing, that is.

A friend of mine just told me about looking at bras on one web-site and
seeing a comment about a guy with gynecomastia telling what bra he
prefers. And he had been told to get a bra by his doctor.

I did know one guy who had breast enlargement due to some medication
he was taking. He was joking about it, so he seemed to have overcome
the embarrassment. C'est la vie.

:-?

Nameste'
Dawn

[shelly]

Well...

The answer to your questions are found in the original post. As to blocking things, yes I have for about three weeks. It has NOTHING to do with the way I look in the picture. I just look that way. And, it is a real problem, not a C'est la vie. sorry if that sound defensive. You just have no idea, how unsafe it is to be percieved as a "man with boobs"

sorry if this sounded defensive or angry.

It's just that after a lifetime of hearing "it's no big deal", when I have been the one on the recieving end of confusion and assault, believe me I've had enough. and I'm going to do something about it.

[Kailana]

I know exactly what you are saying and feeling. I've been through the same with just as many doctors. Though i might add, just having an IS defined diagnosis doesnt mean a whole lot to them. As i had most of my medical records when i left military service, then had doctors doubt to there authenticity because my so called normal Male anatomy seemed normal to them. Even with followup labs showing that somethings going on most just ignored the data, and some even chose to deny what the labs said. I've also had many label me as transgender rather then as intersexed. While i do identify as most transsexual, "I understand exactly what it means to have a body that doenst match my own self conception of what i am" I am still intersexed. Fact is i was a crossdressing young man, before the intersexed diagnosis. Crossdressing for me, well let me express how i felt. But what I think now of it, It is or was just me. The so called social stereotypes we get assigned ie... Male or female just interferred with me fitting into the world. So as a assigned male/raised male truehermaphrodyte offering some advice to another. Ignore those incompetent doctors. I have read your posts about your newest doc. She sounds alot more informed on intersexed issues then the ones you've had. As for looking inside, and money, an ultrasound is one of cheaper ways to look. While not perfect or the most ideal scan available, it is or can show alot that may help verify if there is indead female anatomy internally, or at least some female inside, mixed along with the male. As i have also lived my life with a mix of male and female hormones contesting each other, i understand as well the amount of confusion that can come from not knowing whats going on. Often i think, doctors just need to understand that for most of us, its the not knowing why, whats going on, that is the confusion, that we need clarified. The tests that cost so much, are in fact necceessary, we need solid answers, honest ones too. That raises another issue with me, you see too many times i keep hearing about those stupid HIPA laws, you know we are all told that we have access to our medical records, but fact is, most hospitals withhold the information that we really neeed too understand whats going on.

Last thought now for you Shelly, I understand where your coming from about whats right for you. Do whats best for you, do your best with all the crap other people say, only you know what you are. Meaning, male or female, make your own decisions, well i suppose you allready have. So your alot like me in that regard. Female it is, welcome to the world hun, its not always the nicest place to be but its still ours to chose best how we want to live our lives. Do the best you can with what you have. So maybe you cant afford the scans now, save for a few months, or half a year, whenever you can manage it then get the scans performed. An ultrasound isnt too expensive, 380.00 or so, might vary some with where your at. Oh, and just for kicks, I love ya.
Best wishes from a friend.

[shelly]

The truth is, in my nursing classes, already we are being told that if someone says they are nauseated, well, that means a lot of different things to a lot of different people, but if they actually vomit and you can measure how many CC's it was, then it's evidence.

It's all about quantifying, qualifying, measuring, and proof. So I guess if you have "ambiguous genitalia" and they can measure it, then that's proof? Even then they'll tell you, "most intersexed people are fine with the gender they were assigned, so if you change, you are still trans". (I always wonder about that, since, starting in the 50's they have been able to give an intersexed person a body somewhat congruent with the gender they are assigned, if that's the reason "most people are content to live in their assigned gender"? These people have had GRS, and taken hormones to prevent the kind of crisis that I am going through, yet they aren't considered trans. Yet, when I try to do something about the mess that I'm in and correct my body I am called trans, because my ambiguity showed up in puberty instead of at birth. Don't I have the same right to correct an ambiguous physiology as these people without being called names too?) And before anyone who was incorrectly assigned the wrong gender gets, mad, I will say, yah, you got the shaft too. I do understand what the doctors were trying to prevent, and I do think they meant well, but they sure did it the wrong way.

All in all, I put this post here, because from the start people have suggested PAIS to me, but I have not heard that CAIS, or PAIS, has anything to do with having a female level of estrogen. I have looked, and if someone knows of this it would be great to hear.

The fact is, and the reason for this post is, estrogen controls testosterone, and testosterone controls estrogen. When you have a female level of estrogen, you are going to have look alike symptoms to PAIS, because even though your body IS sensitive to androgens, it can't get them because the estrogen keeps blocking them out. even though I have a totally normal male level of androgens, I still can't grow a beard, have breasts, have the long euchanoid arms (plates not sealing in time because of testosterone not working right, and get called m'am on the phone.)

It is a look alike syndrome

I am trying to leave something here for the future because I know that some people come here first to look for answers sometimes before they go to a DR. Don't let people just AIS you over the internet, or "anything else" you, including dismiss you. Get it checked out by a DR.

Yes the thought has occured to me to take estrogen blockers, and having the breasts removed, but the thought of taking these drugs for the rest of my life, just isn't for me.

When I was 28, I starved myself nearly to death trying to get rid of the breasts (because back then I thought they were just fat). I got down to a 27 inch waist (about a size 6 or 7 female). I literally wouldn't eat for two days at a time (Is this any way to live). Yes, I still had breasts, but they were under control enough to dress prety much like a regular guy. However, when I got hungry and started eating again, they came back with a vengance (got up to a D cup) and the depression and helplessness was crippling.

I don't think I ever want to go through that again, if I pay all that money to get rid of breasts, and they even return to as much as an A cup, I think I will lose my mind. So I've decided "rather than fight it, embrace it."

Does that make any sense? I've been to the transsexual websites and I only occasionally find a person there who is transsing because they had physical problems, or undermasculinized features. How can I relate to a person who is taking a normal body and changing it to fit into another gender? Yet that's the group I get lumped in with? ( and I have great compassion for the real transsexual who is willing to go through all that to find peace, it's just that I see it as a completely separate condition.)

Anyway. Once again, I advise those who have been told they have PAIS, to get the hormones checked. Symptoms CAN look alike, and it may be more than just an inability to process testosterone.

Off to the books now, I have to read 38 chapters in 9 weeks to get out of this class.

Many hugs
Chelle

[Kailana]

ok advice on imaging, Forget my or all my advice on ultrasound... Just paid 378.00 upfront, and i havent got the radioligists bill yet to know exactly how much it all is gonna come too, i was told around another 180.00 for the radiologists fees. While talking to the technician, and questioning why the imaging was so, pathetic, and explaining what i had done in 2001, She told me that I had a Urology, Echo Gram, which also uses ultrasound technology for its imaging, but it shows greater details, Like mine showed, in 2001, small lesions on the lower half of both mulerian ducts, similar lesions on the top half of what I was told was a juvenile uterus, in 1993, but 2001 said was a prostate, I actually believe its those lesions that the doctors used as a reason for surgery without consent in July of 2002. Also, in 2001 the Echo Gram, showed small calcification deposits on both testes, bilateral Hydroceles, small triangle shaped plaque on both testes and a small Epididimal cyst on right epididimus, When it came to my kidneys, showed, many large calcium deposits as well and a enlarged left Adrenal Gland. That imaging couldnt not make out an adrenal gland on the right side. When the techinician looked this time at my adrenals, my left again was easily seen, nothing on my right though, She said Ultrasound wasnt very good at showing evidence of adrenals, and im still waiting on the reports so i actually dont know what that will say, in all honesty I feel like i am wasting money, if the hospitals would just release my medical records all the sensitive data i wouldnt even have to worry about all this junk, but as i am getting denied them, i am forcing them to look again and again, One of these days, I am gonna get those scans, You see so far i have abdominal CT scan, Pelvic MRI, on disc, Tuesday im suppose to be picking up the scans from this last Ultrasound series, and the radiologists report. I kinda think im gonna have some issues with whats reported though. I actually think that the scans/imaging that actually do show unusual structures arent making there way to the Radiologists, or that the information im trying to get, is just being denied to me again. Right now i am just waiting, should this last exam results not work for me then ill be going up too seattle instead. My so called hometown hospitals and doctors so far just aren't all that understanding of just how much honesty means to me.

Shelle, I really think you ought to follow your Doctors advice about getting some scans done. If you cant afford them, you can apply for financial assistance, most hospitals have programs for people who cant affford the costs. And if there is a reason for the scans, With your doctors requests, you should get alot of the costs down, so you shouldnt have to pay that much for them. i know i could of done so for my own, but right now i dont mind paying for the imaging, Im hoping that as i am a selfpay, not using insurance, i just might get the documentation i am looking for. Who knows if i keep trying hard enough, I might even get the hospitals to release my medical records without having to go to court for them, will be the last resort option, i really dont want to have to go to court, i dont need the stress.

And finally take care and best wishes.

[uriela]

This link was posted some time ago:

http://www.utmb.edu/pedi/ppts/ambiguous_genitalia.ppt