I'm excited... about seeing a new Doctor and about a medical paradigm shift... to DSD

[sparklingdreams]

On September 5th I'm going to begin seeing my new Endocrinologist,

Since I got on disability around May, I've been looking for specialists for both of my diseases. I'll leave my search for a neurologist to help me with my GD out, since it doesn't apply.

But my search for an Endocrinologist, Gynecologist, or etc who had experience with both adrenal conditions and "Disorders of Sex Development", formally Intersex, (see below). I was being to give up hope, until I remember the we site address of a health care provider search engine. One that focuses on Colorado and allows me to refine my search greatly. And I finally found her. She specializes in adrenal disorders, among many other hormonal disorders, and is very familiar with Disorders of Sex Development (medically formally intersex). So after reading her website like millions of times and speaking great detail to her receptionist who kept playing relay with the Doctor. I was lucky enough to get an appointment for Sept. 5th, because someone had cancelled. These all I've taken as very good omens.

My current GP has been great with dealing with both of my fairly unfamiliar diseases, although neither are especially rare, she's simply had to much on her plate as her work load has increased to including making runs, which means she's been working like 12 to 15 hours at our local community hospital and then another three to six hours actually at the health center I see her at. And as she's done this and gather more patients she's simply not been able to provide me with the care I need in regards to my disease. I still plan on continuing to see her as my GP, but in order to get the care I need I really need to see specialists.

Which brings me to my first reason for posting. I'm actually looking forward to seeing my new Endocrinologist. Which is a strange feeling. I've never felt glad to being seeing a new Doctor, or even to just visit a Doctor in my entire life. But after discussing C.A.H. and Disorders of Sex Development with my, soon to be new, Endocrinologist. I'm actually looking forward toward meeting her. She didn't the standard "from what I understand", or "the usual approach to ambiguous genitals is" as if she was reading it straight from the N.I.H.'s handbook, but she actually is familiar with DSD conditions enough that we were able to have a real conversation about them. It's was almost surreal talking with her and her staff.

My second reason for this post is no less personal, just less of a personal nature. It has to do some more terminology, classifications, and etc. For those of us born the ambiguous genitals and / or reproductive systems. I'm really surprised I haven't read or heard more about it on this board... well actually I'm not so surprised but that is besides the point.

It's the medical fields switch from using the term intersex to Disorders of Sex Development (DOS) - http://dsdguidelines.org/ (http://dsdguidelines.org/). I personally am very excited about the medical communities adoption of the terminology of Disorders of Sex Development. This is finally a diagnosis I can feel comfortable with. And it opens doors with the medical community that actually seems to be helping them understand us, from a clinical perspective, without dumping us in with the DSM-IV groups, meaning the different types of trans. Disorders of Sex Development is not the communities way of invalidating anyone who identifies as intersex, but as a way of including all of us with ambiguous, confusing, or even mismatched genitals and sexual reproductive organs.

I personally feel very excited about the potential in-roads this offers us, especially within the medical community. And personally DSD is a classification I can feel completely comfortable with. Aside from whether or not someone takes DSD as a way of identifying their bodies, without defining themselves further because of my birth defects. DSD as an identification within the medical community is showing great progress and potential. And it's here to stay! And I personally agree fully with all the ideals and goals of DSD. But I'm not trying force anything on anyone, nor am I saying that for everyone DSD and Intersex aren't mutually exclusive, but that's written better below.


Disorders of Sex Development (http://dsdguidelines.org/)
DSD Clinical Guidelines (http://www.dsdguidelines.org/htdocs/clinical/index.html) (PDF (http://www.dsdguidelines.org/files/clinical.pdf))
Handbook for Parents (http://www.dsdguidelines.org/htdocs/parents/index.html) (PDF (http://www.dsdguidelines.org/files/parents.pdf)
From "Intersex" to "DSD": Toward a Queer Disability Politics of Gender (http://intersexinitiative.org/articles/intersextodsd.html)
DSD But Intersex Too: Shifting Paradigms Without Abandoning Roots (http://www.isna.org/node/1067)
Why is ISNA using "DSD"? (http://www.isna.org/node/1066)
DSD, but Intersex too (http://www.isna.org/node/1067)

[fraulein_Maria]

[QUOTE=sparklingdreams]On September 5th I'm going to begin seeing my new Endocrinologist,

>>> i am soooo happy for you! and jealous! :) the first appt. i could get was in FEB.
i don;t want to be on prednisone that long! sure i feel free for the first time ever, but long term use of it has its consequences. hydrocort is the treatment of choice for my form of CAH (3B-HSD) and cheaper too. I am on the cancelation list, so i do hope i will be bumped up.

Regarding DSD.... apparently you haven't read the other threads on this. Many of us have mixed feelings at best.

Some of us do not feel ourselves to be "disordered" in anyway... just different.

Still, i'm glad you find the new terminology freeing. :)

[Betsy]

Big issues actually. I understand why ISNA went with it and that is fine---kinda sorta but not really. I haven't done much BLO stuff this summer (off doing other things :) so nothing was written about it on the site thus far. I'm running behind on a couple of book reviews as well so expect a number of updates once it turns cold in another month or two.

Betsy

[miriam]

Big issues actually. I understand why ISNA went with it and that is fine---kinda sorta but not really.

I fully agree with you on that.
Groeten, Miriam

[Kailana]

Congratulations on the new endo. I know mine helped alot.

As for the DSD im with Betsy, Id much rather see Unique sexual development or maybe Variations of Sexual development, but the Disorders of part just makes me feel like all the other labels tooo. im not good enough the way i was born, that i am not normal, thatts a word that gets thrown around alot too. Im suppose to be different. thats how God made me. So why would ISNA promote using Disorder, I dont get that, too me it just sounds like another stigmatizing label.

sorry for the comments. i just dont understand

[sparklingdreams]

First, Doctors' see it as a Disorder,

And for a lot of us it feels like one as well. I don't feel that the way my genitals were born define me, no more than what any Doctors' did to any of us here. So I don't feel I'm disordered, but that's were the Disorder of Sex Development. I know a lot, or most, people here 'identify' in one way or another as Intersexed. However that's not the case for me, or most Intersex people. However where I do see a deep need for work is in educating medical professionals and parents' of newborn infants with any kind of D.S.D.. The Intersex movement, I feel, has been hindered by term its self. Not only does it not fit how most people with D.S.D. feel about ourselves. Intersex it's self implies a third sex, being between the gender norms.

I'm all for everyone living however they want to. No person, social construct, or whatever can dictate how anyone lives their lives. But these are completely separate issues, even when they do intersect. I'll stand up and fight for everyone's right to freedom of expression, including gender expression.

But for most of us born with a D.S.D. those aren't issue. Even when we're incorrectly assigned at birth, or our chromosomes' say otherwise (CAISer's), we tend to move past that and just want to live life. Although I feel we all agree that genital surgeries should not be done during infancy. As I, and others see it, the trauma and other problems resulting from them are far more pressing than changing the country's, let alone the world's, perspective on sexual binaries. Not to mention, more possible.

I doubt any education would have helped me growing up, my parents probably couldn't have processed it (but my Dad is, truly, certifiably insane). But most parents & Doctors can be. Especially when their explained that what their child is going through nothing to be afraid of and is just a disease that can be treated. By definition what causes D.S.D.'s are diseases, mostly genetic in cause, and the resulting mutations in our genitals and / or reproductive organs should be considered disabilities... since I can't imagine any of us, regardless of our type of D.S.D. or surgery, can say that our birth defects hasn't effected our lives in some negative ways, in many cases disabling ways. This also helps Doctors understand our D.S.D. with in the current medical establishments overall perspective of diseases and disabilities.

I have nothing against those who want to change the world perspective on sexual assignment & gender identity, to change the medical establishment... to create a true paradigm shift. It is a large & noble cause, but one that cannot be resolved quickly. And D.S.D. works within the current paradigm, and therefore saves and improves lives. And I personally I feel this needs to be done as soon as possible, however possible. And the D.S.D. paradigm is working faster & deeper than Intersex / third sex has, and I can't see down points to it.

The movement toward Disorders of Sex Development lets us address our medical & physical issues our births, without adding the additional social and political issues that the former 'Intersex' movement has embedded in it. Most importantly D.S.D. this without alienating the majority of those affected by these diseases, by inferring we're anything but normal men & woman.

[Sunshine1]

The first time they actually write the word adrenal crisis on their web page or that women with CAH have their husbands children is when I think they might actually care about CAH.

I had some respect until They had a fat advocate speaking for intersex conditions - One of the reasons for my cancer was because I'm fat, had my gall bladder out because I'm fat and have a fatty liver ...well because I'm fat.

This Disorders of sexual development is no different than John Hopkins- Errors of sexual development. Congenital Adrenal Hyperplasia - Error of the endocrine system doesn't have that same snazzy appeal for them.

DSD, ESD .....ESP, X FUCKING Y Z all of it really means nothing but good for lectures halls and crap like that but down the hall in thereal world where they think the patient can't hear it will be no shit ..this is one of those conditions that have hemaphrodite characteristics? or if they think the patient lives on the same plane of reality they will bring it right to the patient that some of the symptoms were being born with a "penis (without testes) and vagina" and then they go on that they've seen it all and they have. You can dress this stuff up all you want and really doesn't change a thing. CAH is a disorder of the adrenal gland but that woundn't fly because they need our conditions for something else. None of them give a shit about CAH but what a great fucking condition to point out what they need for other things.

I like pan gendered myself ....I can have anything I want from any gender and it is that easy. Instead of study of intersexuality :CAH - it would be far better to see the study of CAH and the COACH store is having a 50% of summer sale ...Oh my gosh ..happy joy.

I do say though that the ISNA does have one cute fuck of an Endo on their medical board ...he has great hair and a geeky cute smile ......yes baby feed this lab rat some cheese.

[sparklingdreams]

Well my visit to my potential new Endo didn't go so well,

Actually it was pretty standard on my past experiences, which is to say she sucked. So I'm just gonna stick with seeing my GP, and from here on out stay with my GP. I'm just so tired of so many specialist and their over whelming ego's, and what seems like their need to redo and re-examine and re-do everything.

It took me more than three years to get my C.A.H. stuff all balanced out to where I finally felt well and everything was working. But the Endo I went to see yesterday literally wanted to start over from the begining. I explained what I'd went through test, Doctors, and etc. But since I lost all of my records when I ended uo homeless over one year ago none of that was worth anything. I litereally lost everything I owned except for two back packs of clothes and my cane. So she was incesant on starting over, even saying she would take me of two of my hormones, just because (and I quote) my "regimine is kinda a-typical". Yeah and... WTF.

I dunno how I feel about the DSD, Intersex stuff since yesterday. My father was so abusive and so psychotic I'd just convinced myself, or more like I needed to believe it was all him. Like the Doctors had no choice... it was what I needed to believe to survive I suppose, just to survive growing up. But the more I experience dealing with any who "specializes" in "helping" intersexed conditions the more I'm forced to accept the active role Doctors must have played.

So maybe DSD can lat some ground work that may help generations down the road.. but the more I face my past, my memories, the more I'm begining to relise how right the Intersex movement is, that complete changes, a complete over hall, a rebuild basically. Which is going to end uo affecting views on sex & gender perspectives medically and therefore socially.

So I can admit when I'm wrong. And I've been wrong... I'm still against being forced into some third 'it' sex. And I can't pretend I have any idea how to fix the system, but what's here now doesn't work, and small changes aren't going to fix it. I guess it's just flawed from the ground up.

Which is why I've prolly come off all very self rightous, and I've probably hurt more people than I ever would have wanted. But I'm still working through my past... I didn't survive it unscard, actually I have some very very deep emotionally issues and an well I don't want to say it all but I see my therapist for more than just personal motives... I'm just saying there's a reason I occasionally post we when referring to myself. And having one main attacker, the father, somehow made surviving easier. And I've held onto that in ignorance and fear.

So I'm just saying I'm scared, alone, and hurt. And because of that I've been wrong and prolly crule, without meaning anything.

So I was wrong... and mostly to anyone I hurt I'm sorry.