Test results, denial of treatment... and loss of self.

[sparklingdreams]

Well I nolonger kbow who I an,

Or even what I am. I conflict with my previous chromosome test, from about 9 years ago, a recent test has revealed that I am apparently 46xx, with C.A.H.. These results were double checked from two sources. So it appears that some other condition caused my genital mutations. So what does that make me officially? A male tranny? A freak?

I'm sorry I lied. I never wanted to be a faker or anything. Now I just don't know what I am? But this will be my last posting, accept perhaps in reply to this. I may return when I find out what it is that I am. Apparently some kinda intersexed male tranny cross-dresser transgender thing. The father was right after all.

I have to appologize for joining this group, since I was 16 and all this time through lots of Doctors, Endocrinologists, and Specialists no one said or showed anything to conflict it. I don't have my old Endocrinologist tests, I used to. They always felt like my sheild, protection against memories of what the father said I was. He was the fourth Endocrinologist I visited with. He was the only one that was okay with me not taking off my clothes. I remember hugging that test result that said 46xx on like the fifth or sixth line of the first page. But something was wrong with that test.

So all the activism, writinggs, and changes I've been working toward, up until now, was all under a lie. I mean I have some kinda the Disorders of Sex Development, maybe it is what ever type of C.A.H. I have, maybe something else. I guess statiscally it prolly is my C.A.H..

But I'm not really female. I truly never questioned my old Endo's chromosome test, and never had a reason to. And to imagine I would have lived in some kind of stupid happiness if I hadn't become homeless and ended up loosing those records. If I'd had the old one my current, well old GP now never would have ran the new test. She did say that the lab that did my first test is closed so she couldn't check beyond the records my first Endo's office sent her. That's why she had it ran several times. But I'm just not a woman, why I menstrate, why I my puberty was what would have been normal for a girl. I don't know.

All I know is my current Doctor won't prescribe any of my C.A.H. medications, not my Cortef or Florinef... even though my results showed I need them. She was very kind and let me refill my medications today before she cancels all my refills tomorrow. And she said she would send out all the referral letters I need so I can start seeing an Endo and get my needed prescriptions filled before I run out of my hydrocortisone & fludrocortisone in 30 days, which was nice.

She appologized and made it clear she doesn't want to put my health at risk. But she said that because she is just a GP, and after the Endo I visited on the fifth called her and they 'discussed C.A.H. in general' but not my interview with her, my GP said she just felt to unqualified to continue treating my C.A.H. because of something that Endo said.

So I have to start trying to find an Endocrinologist really quickly. And I don't even know what I am. I know I'm gonna have to go through a lot of tests again and I've got to find someway to make myself be able to take off my clothes and let Doctors inspect whatever it is that's between my legs cause I know they're going to make me. I'm scared, but I don't know why I'm writing this here.

I'm not a woman, I'm a male I guess. So my chromosome test must mean I'm some kinda tranny or something. I'm sure my nre Endo will tell me what I am, I guess I am the 'it' I was always called. I wish I'd never saw that old Endo, or those therapists who supossedly were "helping me heal"... mostly thouugh I'm sorry I presented myself as female when I'm clearly not, I'm 46xy... I have mutateted & mutilated genitals (if that's even what I have down there)... I menstrate but shouldn't... & I have C.A.H.

But because my medications were a-typical, namingly inorder to balance out my period, years ago, my Endo put me Premarin to balance my periods. But according to that Evil local Endo who said that woman with C.A.H. never need Estrogen, which I know isn't true just from what I've learned about C.A.H. while believing I was a woman with C.A.H..

So according to my old GP because of those two things (Estrogen & 46XY) she wouldn't prescribe my Cortef or Florinef anymore and she's cancelled my refills'. So I have 30 days to find an Endocrinologist or an amazing GP and manage to get my prescriptions... or I'll be taking an extended torture session at hospital. I should prolly stop with my emotional rambling.

I have to face that I have to go through all the tests & experiments again, I have to face that I'm not really female or male, I have to face the stigma & disgust I'm going to get while looking for a new Doctor (again), I to face that my father (though insane & abusive) that he was right, I have to face that I have no idea what I am reguardless of how I feel, I have to face this alone & in silence, and worst of all I have to face that eve though I didn't know it I've been lieing to everyone here (especially myself - in reguards to believeing I was what I thought I was).

I don't know what I am, but any word I can think of makes me sick. I'm truthfully vomitting just thinking of the words that now describe whatever I am. I'm scared to death I'm going to die because I doubt 30 is enough time to get in and see any Endo and manage to get my prescriptions in time. And even though I don't want to be whatever it is that I am, apparently I'm some some kinda tranny with one of the D.S.D.. I guess that makes me an intersexed tranny. I don't want to die, but then again yeah maybe I do. I have no clue who I am or what I am or why my body does anything it does. I guess my ex-Doctors' choice to stop treating me is a good thing. Because while I would never kill myself. In 30 days I'm going to be out of hydrocortisone and fludrocortisone and my life may have taken it's cource for this time around. So much for Doctors harming none.

I just had to say how deeply sorry I am for lieing to any and every one here about what I am. I really didn't mean to lie. The father was right and the Doctors' prooved it. I'm not saying everyone XY is male. I'd give anything to be a CAIS girl. I'd give anything to know what I am. But the only thing that seems truthful is that the father was right.

I've been sick all my life because of C.A.H.. I was born mutated and mutiated to ne more male in genital appearance because the father was apparently right. I went through a female puberty and menstrate for reasons I'm sure Doctors are going to experiment on me to find out why. My abilitity to have a life has been taken by Generalized Dystonia. I've lost all my family and friends. And without knowing it I've lied to the few people who were supportive. But nothing changes the fact that I'm male, and now my mind feels as if it's being ripped apart. Nothing makes sence anymore. Accept that I understand why my life has been so full of pain. Because I deserve it.

I no longer no what I am... accept that I'm sorry to have lied. And that if I ever find out what kind of DSD I have (CAH or not) and if I have the strength to face myself. Thrn I'll be back, but even then I guess I'd still be lieing, because I'm van't stop living as a woman. I don't even know if I can live with that truth. That I only live "as" a woman... when 12 hours ago all I thought was that I "was" a woman.

I'm sorry I was wrong.

[TracyL]

Ok.. Let me be the first to say.. Who cares what a bunch of no nothing dr's tell you what some obscure chemical represents what you are. You are still the same wonderful person I have befriend... So your chormisones say you are male. So what? My eyes are blue. If some no nothing medical prick told me tomorrow that I was a man.. I would essentially tell him to screw off.. who cares. I've lived the life of a woman, I am a woman.. blah.. These c*cksuckers seem not to know what they are doing anyway..

Anyway, the 'thing' between your legs does not define you.. much as looks do not define a person.. Hell, your body DOES NOT DEFINE YOU. Only your heart.


And a note to anyone who will say otherwise.. prepare to do battle with me. It will not be pleasant.

[Dianne]

Tracy is SO right! You are NOT your body, or even your mind but a spirit that transcends all that. The only thing that matters in this life is living the life you WANT to live. No one can tell you who and what you are - that comes from within and it sounds like you already know. You are not lying to anyone when you are being true to yourself.

Many (all?) of us went through some kind of agony trying to figure out "what" we are and, for many, we chose our path in spite of medical indications to the contrary or social pressures to be something different.

Don't get hung up on "the box"! If you are "corn flakes" it makes no difference if the box is "Cheerie-Os" - BE CORN FLAKES! NO BODY has a right to tell you what to be or who you are - that is for you to define.

[sparklingdreams]

Those are kind words,

But they don't change the fact that as far as I've ever believed and know was that I was female... now the most I'll ever be is something that's living as female (a dirrect quote from my Doctor). And I don't even know if I want live AS anything. A dog can't be a cat no matter how it feels... even though there are a lot of dogs that act like cats and vice-a-versa. Sure no one can tell me how to live, but DNA is the very biological code that says what I am. And apparently my DNA say's I'm a male with C.A.H. that cause ambigous genitals. And that's not a truth I ever even considerred, and I wasn't prepared... and don't feel like I even want to.

Living with memories of 16 years of abuse has been nearly impossible. But now every time I relive any memory I nolonger even have the defense of believe he was wrong. Now I just know those thing he said are true... at least about what I am, so 'it', something in between... he was right. I don't know if I have the strength to live with that being true... with them being right about whatever I am.

[Wyn]

Katie.... I know How and What you feel. Make No Mistake of this! Let me re-post an item that I feel says far more than any 'doctor' could EVER say about who YOU are.
I will provide a quote from a noted geneticist and sex researcher, Dr. Eric Villain;
"The biology of gender is far more complicated than XX or XY chromosomes, and may rely more on the brain's very early development than we ever imagined," genetics and sexual medicine expert Dr. Eric Villain, said in a prepared statement. CONTINUE QUOTE; “Surgical sex assignment of newborns with no capacity to consent should never be performed for cosmetic reasons, in my opinion; we simply don't know enough yet about gender to be making surgical or legal assumptions," contended Villain, an associate professor of human genetics, chief of medical genetics, and director of research in urology and sexual medicine at the David Geffen School of Medicine at University of California, Los Angeles.

Make no mistake - these 'sex' chromosomes mean Very little in terms of Who you are, and what you feel like. Our society has been deluged with the myth that these chromosomal bodies are the determining factor in what we 'should' be. This could not be further from the truth. I encourage you to continue to feel the way you do....do NOT change your core beliefs about who you are, just to conform with the misconceptions and mistaken ideas of those who would subvert and try to diminish your True self.

I KNOW this path will be hard, and full of pitfalls. I'm dealing with these same sorts of conflicts myself. Regardless of my own genetics, I KNOW that my soul (and my brain patterning) is Female. Of this I have absolutely No Doubt, and neither should You!

So, if this is the way YOU feel, then ... YOU GO GIRL!!!!! And don't let Anyone tell you otherwise!

I've written a lot pertaining to this particular item. I'll direct you to another post I made that speaks specifically to this issue;
http://www.bodieslikeours.org/forums/showthread.php?p=10282#post10282

Take heart in the fact that you have Not lied or mislead anyone here....or anywhere else. You have spoken the truth as you know it from your heart. That is ALL that counts in this miserable, selfish world.

[forza4]

dear sparklingdreams,

Just ask yourself, apart from anything: Do you feel like a woman? If so then just keep up living as a female.
I know a girl diagnosed with AIS. However, for me she is not different than any other girl i know. Some people will disagree with me , saying that because she has AIS she is no real woman. Rubish! Her body might not be exactly the same but she feels and thinks like a woman and that defines her as a woman. She defined herself as woman.

People just love to categorize everything. From the very moment we are born we are categorized as male or female. For intersexed people this is not different. However it's not an obvious thing. Docters will push you into a category which they think you belong to. Nobody can make that descision but yourself ! Don't let people say how you have to live, ignore them.

Each individual body demands to be accepted on its own terms.

Make from your life what you want, choose it your way. Life is too short not to enjoy it.


, a not intersexed guy

[prince....ss?]

Well I nolonger kbow who I an,

Or even what I am. I conflict with my previous chromosome test, from about 9 years ago, a recent test has revealed that I am apparently 46xx, with C.A.H.. These results were double checked from two sources. So it appears that some other condition caused my genital mutations. So what does that make me officially? A male tranny? A freak?


Ok, I’ve had a long hard day at work, came home drank a beer or two( perhaps drunkin’ posting) So I sat down and viewed your post. I’m not always the brightest bulb in the pack but isn’t (46xx) considered a normal woman??? Was this a typo or what? Then you move to the 46xy on hormone replacement. So, I’m just confused.

But the jest of your post, or what I think you are conflicted with all I can say is:

You are the same person you were 5 minutes before you got your test results… nothing has changed. Relax and be good to yourself. I went through the same thing when I got my medical records almost two years ago. I went from a woman with no ovaries to a male-pseudo hermaphrodite that is 46xy.

Ps. It’s not considered lying if you truly believed what you were saying at the time. Perhaps you were just mistaken.

Prince….ss?

[sparklingdreams]

To every who had kind encouaging words,

I thank you, they meant a lot. And than you for your informatiom. It gives me hope that someone may be able to figure out what I am. I dpn't know anymore. My head hurts trying to think about what's happening. My worlds cracking as much as I am.

My Doctor did call today, after I left her a message begging her to hurry on my referrals, because I was just so scared I wouln't get into see an Endocrinologists before I ran out of my Cortef & Florinef. She did say if I was only days away from running out but that I was still waiting on my appointment, then she would refill my prescriptions again.

Though I hope I don't have to. My new Endo is just going to see me as a question mark from the begining, where as my old GP used to see me like I did. Now that I have no idea what I am when nothing I am is ussual.

I shouldn't menstrate and havexy kerotype but I do. My 21-hydroxolase CAH, because my new kerotype test says I'm XY, isn't what mutated my genitals so now I'm going to have to go through so many tests and exams I'n nasous and afraid just imagining it. But I need to know what I am.

Even though I feel like I'll never be able to live with it. I feel like I'm going insane or having a nervous break down because my mind, it just can't process this.

For you Prince...ss I don't know how you lived through what you went through. But I understand why your mood tends to be angry. Though I really wish you hadn't said what you said to me. Even if you turn out to be right.

I won't be able to live if I find out I'm some sudo-whatever... I can barely look myself in the mirror. I just end up crying or throughing up. My brain is just shutting down, this is to much, I just don't understand why this is happenning, or what I am, I'm just back in the Doctors hand to figure it out, if they even can.

[Betsy]

Katie,

Did the test come back XX or XY? You've written both in this thread.

Sometimes it is possible to actually have two types of intersex at the same time. For instance, on the CAH.org board there is a parent who would post once in awhile who said her son had CAH and hypospadius.

[turtledove]

"a recent test has revealed that I am apparently 46xx, with C.A.H."
"mostly thouugh I'm sorry I presented myself as female when I'm clearly not, I'm 46xy... I have mutateted & mutilated genitals (if that's even what I have down there)... I menstrate but shouldn't... & I have C.A.H."

-did you make a typo?
-Don't appologize , you haven't committed any crime. You need some good friends! Get away from people who don't show you respect, they don't deserve to be in your presence. Stop hating and degrading yourself plz.

[sparklingdreams]

Did the test come back XX or XY? You've written both in this thread.

This latest test came back XY (male), a previous test was 46xx (from about nine years ago). I guess I just mis-typed it out of years of living with an incorrect belief in what I was... so yeah the test I just had done was 46XY. I'm sorry for not correcting that.

[Meadow]

It is often in life when we are hit with news that seems devastating. The sudden death of a loved one, or, that pathology report that comes back as C-a-n-c-e-r. It may sound trite when another says "You'll get through this". Most persons, myself included, have those events that changes the course in one's life. I can even give you some dates. June 25, 1979 and September 21, 2001 are two big ones for me. What happened on those dates is not particulary relavent. Yet somehow, I'm still here, and I'm as happy as I have been in a long time, and the future looks better than it has in a very long time. The memories of those dates are with me still, but it took YEARS to finally put those times to rest.

Keep your head up and just know that things take time. But each day brings a new beginning to face the future.

All the Best, Meadow

[sparklingdreams]

I'm trying to hold on,

But I'm not having much luck. This is all way to triggerring and connected to the abuse I suffered growing up. And the conflicting results of so many tests feel like they are only proving the thing the father used to say while beating & raping me. I'm blacking out again, loosing time, and all of the time I'm aware all I can do is cry while I feel like my life has become out of my control.

My only hope is that maybe my next Endo may know enough about D.S.D. and understand the trauma I feel and maybe even be up to date on new research. And hopefully I can make some sence of this life. But right now I just feel like I'm trapped in almost the exact same situation I was growing up. With there being no question about my having 21-hydroxolase C.A.H. it means that's not what cause my mutations. With my GD I'm constantly in pain, daily to the point of crying from the pain alone. And now I'm terrified of what tests the Doctors may force on me. And because I need to ensure my CAH is addressed just to stay alive I'm afraid I'll simply let them do whatever they want to find out what caused my genitals to be mutated.

Now I'm not saying my father was justified in his abuse, but no matter what it seems my fathers reasons for abusing me that I need to grow up and be a man! Turns out to be, at least genetically, right. Although my internal sex organs only seem to confuse Doctors all the more, so I'm afraid they may want to perform a hysterectomy, which I don't want but since I don't even know what I am, I feel like I have no control.

A feeling I grew up with, but one I'd fought hard over the last nine years to take back. Now it seems I lost my identity and healing in one test results. And I'm blind as far as where or even how to continue from here. Except I know I'll keep going. I just don't know if I can emotionally take everything that is happening now and how much it ties to my past.

[Sara Zeal]

"fathers reasons for abusing me that I need to grow up and be a man!"

Pardon me saying this, but your father's the one with an issue here. It's certainly not you, and I don't see how it could be your problem either. He was not right unless you think he was, which I don't think you do.

He used an excuse to project *his* problem onto *you*. That's common to vilify the victim into silence I hear, by making them into shame and guilt, and it's an extremely destructive attitude. It really can destroy the victim, if they keep blaming themselves over it, whatever it is, and the aggressor goes around thinking he's right, and reduces his guilt.

It's by no means right, it's by no means humane, and this is what gives men a bad reputation too. Not that all men are angels, I myself have some resentment to men in general for being insensitive, but I try not to generalize. I won't think all men are bad, but it colors my judgment at first and that I can't deny, I'm less open with them.

Anyway, sorry for going on a slight rant there.

Back on topic, you are a woman, you don't just "think you are" you "are", and don't let doctors and shrinks and endocrinologists tell you "aren't really" anything, unless you agree with them, or identify as neither/both.

Sara~

[sparklingdreams]

I needed to be reminded of some of those basics,

I know how I feel I am and that has always been female. But I've also lived overly concerned with how "others see me". I've posted this message because I want to know where I fit in the world. That's not to say I would live any other way. Indeed I couldn't, I mean I got beat for years trying to, and failed. I can only be myself. And thank you Meadow & Sara. And help from our new therapist. Despite how little I've spent with her and as busy as she is. Her truly deep expression of concern and understand has really endeared me to her, rather quickly. And an extra special thank you to Wyn.

While several people (who used to be on BLO) who were instant messaging & e-mailing showed anything but support. I've gotten some real support and some clarification, from Betsy. While at this point anything is still possible as for which of the D.S.D. I have, or how my new Endocrinologist ends up `defining` me. For whatever reason(s); genetics, in utero brain/genital development, or millions of other reasons. I'm female... it's not just an identity I have, but core to how I live and how I relate to people and interact in this world.

Maybe because I used books, science, bulletin boards, and later the Internet as a form of escape when growing up, I needed to understand what could have made me feel this way and 'be this way'. I'm going to be working with the best Endocrinologist unit in my state and hope they will work with me even if it means that working with their Genetics lab (I'm working through my local University Hospital. And they are looking into who is their best Endocrinologist to handle my case, which I'll find out this week.

And after I left her two voice mails where I basically just cried because of my fear of being without my Cortef & Florinef. My GP called and let me know that if I'm waiting an appointment with my new Endo and get close to running out that she will refill those prescriptions as long as I need her to. Although I truly hope I don't need her to. I want to get this started, finished, and start to move on again. Although this has been a set back (including some painful attacks from former BLO members via IM).

I have hope they'll figure out exactly what is going on. The only thing I've been able to find that is even close is Chimera syndrome, which doesn't seem to be any D.S.D., although it's not really researched enough to really find out. So I just hope they can explain what has happened to my body and why.

No longer because I feel that whatever they find out will define me. After surfacing from the initial shock of this test, I know only I can do that. I mean if I let my external genitals define me every Doctor would call me 'Intersex', and everyone knows my feelings on that.

I just want to feel like I understand what is going on with my body, but more importantly because I need to feel like I'm not alone in whatever it turns out I'm living with. Which is why I'm a member of BLO after all, as I'm sure that's why most of us are here. Sadly though, I'm feeling better, I fear this wound is going to take real time, and even more therapy to truly heal.

[Peter]

I just want to feel like I understand what is going on with my body, but more importantly because I need to feel like I'm not alone in whatever it turns out I'm living with. Which is why I'm a member of BLO after all, as I'm sure that's why most of us are here. Sadly though, I'm feeling better, I fear this wound is going to take real time, and even more therapy to truly heal.

Hi Katie,

I hope you get the best care possible in sorting out what is going on with your body. In reading your past posts, I have gotten the distinct impression that the medical profession has done a very poor job of educating you about your body. That you have three things going on at once, having XY chromosomes, having CAH, and having regular menstruation, means that you should probably consult a top specialist in the area of intersex conditions (or DSD as you like to call it.) Good luck. I hope you get the answers you are looking for.

Peter

[sparklingdreams]

Hi Katie,

...you should probably consult a top specialist in the area of intersex conditions (or DSD as you like to call it.)

I'm going through the best Endocrinology unit in the state, their at University Hospital, that accepts Medicaid (which is the only medical coverage I have). I am doing all I can to make sure I see someone who 'truly understands' the multiple D.S.D. (or Intersex conditions) and the trauma associated with infant genital mutilation and can then, hopefully, understand the fear I'm feeling now as this all just seems to have gotten incredible confusing out of no where.

So yeah I've been given treatment that just totally sucks and Doctors who never finished looking at all the factors. But all I can do is hope that University Hospital has someone qualified to handle whatever is going on. I've taken it as a hopeful sign that when I tried to schedule an appointment I was told that the lead medical director (in their Endocrinology clinic) is reviewing my files to decide which Doctor is best qualified to help me. Sadly a part of my feels this may be a bad sign as well.

Thank you for the advice, do you have any (advice that is) on how to get to see a specialists who actually is up-to-date on D.S.D. (or Intersex conditions). Besides just like quizzing them when I meet them?

Thanks again for you're advice and also for you're best wishes.