I respect all ur opinions!!! and love yas all lots,
 

just respect my right to be pissed off, Lol thanx Betsy.

Hi Miriam!!!
First let me apologise for coming off like I was against all surgery, ok?

Like u I am against UNNECESSARY surgery,
Point of view? My own, not a lot else to go on sometimes, Lol

My problem is that some of the surgery, such as the removal of my testes was unnnecessary at the time.

I am glad u are happy being a girl, MORE POWER TO YOU
and I fully respect that some people are happy the way they are.

I can only speak for myself (or people with similar feelings to me), and that I am unhappy with what was done, and the disregard of my feelings and future well-being.

If surgery is for health reasons, then by all means go ahead,
but if it isn't an immediate problem, it should be left up to the patient.

Ok? Friends? LOVE YAS LOTS!!!

PS, Thanx for those links too, information has been hard to find!

Of course you are a friend, Shodan and I'm glad you want to be my friend too! When I wrote all that stuff I had no intention to offend you. I'll try to explain...

(BTW, Shodan, in the text below I try to avoid the words he/his she/her because you wrote "I intend to COME OUT as a hermaphrodite, Tatoo, name change, I havent decided what to do with my body..." and I really don't know what words to use at the moment.)

Is Cloacal Exstrophy an intersex condition? In their excellent article ‘Discordant Sexual Identity in Some Genetic Males with Cloacal Exstrophy Assigned to Female Sex at Birth’, William G. Reiner, M.D. and John P. Gearhart, M.D. clearly state
(The New England Journal of Medicine, vol 350, No,4. page 338).

When I said that from a medical point of view CE is not an intersex condition, I didn’t say that CE doesn’t lead to bodies like ours (in lowercase) or that I want to exclude Shodan from Bodies Like Ours (uppercase). When doctors told Shodan that CE is an intersex condition they did that to cover up that they made a terrible mistake. With an intersex condition it sometimes is not possible to tell the future gender identity of a child. That is the reason that some of us had to change their ‘gender presentation’. This is not a transition as we see in transsexual people; it is the correction of a judgment error. But changing gender presentation or not, we stay who/what we are: people with some aspects that are considered male and some aspects that are considered female.

With CE we see a completely different problem. Shodan was assigned the female sex just because it is easier to dig a hole than to build a pole. Shodan’s situation is almost completely comparable to the situation of David Reimer. Boys without a penis are just boys. When Shodan’s doctors say that CE is an intersex condition, they probably will see David Reimer as an intersexed person too.

So…. Not only from a medical point of view CE is not an intersex condition, but also from my personal point of view it is not an intersex condition. I don’t say that to offend Shodan, but to explain to Shodan that the doctors are still not telling the truth. They use the word intersex to cover up their own lack of knowledge. Lack of knowledge that has led to an incorrect sex assignment and the unnecessary removal of testes. The removal of the testes is indeed a castration in Shodan’s case. What has happened to Shodan is even worse that an incorrect sex assignment of children with an intersex condition because in intersex cases with ambiguous genitalia doctors can say that it is impossible to predict the child’s future gender identity. If people had not been listening to John Money, if doctors would have done long term follow up research 20 years ago like now has been done by reiner, if society would have recognized that a boy without a penis is just a boy… Shodan would probably have been raised male. If… But ‘if’ never happened.

Times are changing. Recent research makes it possible to predict a child’s gender identity better than 20 years ago. We know that nurture over nature is plain bullsh*t. We know that complete AIS’ers look like women, walk like women and talk like women, so they are women. We know that most women with CAH have a female gender identity, even when they sometimes behave and think a bit more like men. We know that most people with Klinefelter see themselves as 100% male, even though they have an extra X-chromosome. We also know that for some other conditions like 5ARD and 17BHSD it is almost impossible to tell the future gender identity of a child. But when we start to mix up all the possible conditions and bring them all together under the name ‘intersex’, it will be impossible to give people the treatment they need. I think it is very important that for a better treatment in the future, we need to get a better definition of what is an intersex condition and what not.

Excluding people from the diagnosis ‘intersex condition’ will prevent situations like Shodan’s situation. And also better research will help. But for that reason we should stop calling everything an intersex condition, especially because some people use the confusion for their own purpose (like Shodan’s doctor is doing now). I also have another reason to exclude CE from the intersex conditions. In two recent articles in Dutch news papers the article by Reiner was quoted to prove that children with an intersex condition should be raised according to their chromosomes. That would be as stupid as transforming XY-children with CE into girls.

FYI, I included the abstract of the Reiner article below, as well as two extra links to websites with information on CE. Warning: the graphics can make your stomach turn 180 degrees. But those pics show why I said Shodan wouldn’t be a ‘normal’ boy if raised male. My remark had nothing to do with having a penis or not.


Groeten, Miriam


ABSTRACT

Background Cloacal exstrophy is a rare, complex defect of the entire pelvis and its contents that occurs during embryogenesis and is associated with severe phallic inadequacy or phallic absence in genetic males. For about 25 years, neonatal assignment to female sex has been advocated for affected males to overcome the issue of phallic inadequacy, but data on outcome remain sparse.

Methods We assessed all 16 genetic males in our cloacal-exstrophy clinic at the ages of 5 to 16 years. Fourteen underwent neonatal assignment to female sex socially, legally, and surgically; the parents of the remaining two refused to do so. Detailed questionnaires extensively evaluated the development of sexual role and identity, as defined by the subjects' persistent declarations of their sex.

Results Eight of the 14 subjects assigned to female sex declared themselves male during the course of this study, whereas the 2 raised as males remained male. Subjects could be grouped according to their stated sexual identity. Five subjects were living as females; three were living with unclear sexual identity, although two of the three had declared themselves male; and eight were living as males, six of whom had reassigned themselves to male sex. All 16 subjects had moderate-to-marked interests and attitudes that were considered typical of males. Follow-up ranged from 34 to 98 months.

Conclusions Routine neonatal assignment of genetic males to female sex because of severe phallic inadequacy can result in unpredictable sexual identification. Clinical interventions in such children should be reexamined in the light of these findings.


http://www.emedicine.com/ped/topic704.htm

http://bms.brown.edu/pedisurg/Brown/...Exstrophy.html

Cloacal exstrophy: A complex anomaly of the abdominal wall, the intestinal tract and the pelvic organs. Infants with cloacal exstrophy have a short intestine, an absent anus, a large defect of the abdominal wall (omphalocele) and the bladder (which is exposed and lacks a front wall), and anomalies of the pelvic bone and genitalia. This is not the same as a bladder exstrophy (defect of the bladder, with or without anomaly of the penis in boys), which is a less severe condition.

CE and Intersex
 

Hi Miriam,

I know that the medical world probably spends as much time as we do trying to figure out what is intersex. The quote from your post:

"Cloacal exstrophy is not an intersex condition: aphallia and phallic inadequacy are structural anomalies."

seems to have a certain "loopy" irrational quality about it to my mind. CAH, AIS and 5ARD involve structural anomalies caused by bio-synthesis "defects". Before the rise of modern medicine, I am sure that a midwife who saw a CE child with aphallia would have thought that the child had atypical genitals. Such a child may very well have been considered a hermaphrodite, as having a penis is central in most people's minds to what being male is.
You said that "Boys without a penis are just boys". I find that sentence very confusing in the context of CE. What about XY girls? You went on to mention David Reimer. I think that there is an important difference between Shodan's case and David Reimer's case. David was born with male genitals and had them removed after a horribly botched circumcision. He was not born with aphallia or a related structural anomaly. When other intersex activists that I meet say that David Reimer was not intersex, they mean that he was not born with structural anomalies. I believe that Shodan is probably intersex as he was born with a serious structural genitial anomally which led to infant genital surgery. (There may be people in the medical and intersex community that would not see Shodan as intersex, but I have not found their arguments convincing.) The intersex community can not have it both ways. We place alot of emphasis in our relationship with the outside world, particularly the transexual community, by claiming the importance of birth conditions. So, given the importance of birth conditions, you would have to say that the cases of David and Shodan are not alike.
It seems that when talking about intersex, there is a tendency to place alot of emphasis on "blending" as a criteria for what is intersex. It seems that "true hermaphrodites" are really the mixture of two zygotes in the womb, and do possess both male and female genital tissue. I suspect that other genitial structural anomalies such as having two penises are also the result of such zyglote blending. So, if we use "blending" in a zygote blending sense of the term, very few Bodies members would be intersex.
There is a more limited sense of "blending" which means having genitals that have both male and female characteristics. This use of the term "blending" seems to include CAH, AIS, and 5ARD. These conditions are mostly hormonal in developmental nature. It seems that there is a tendancy to exclude Hypospadias from intersex conditions although its origin is the same bio-synthesis "defects" involved in other hormonally bases intersex conditions. Here as many other areas of intersex, value judgements come before science. As of today, two very different types of "blending" are lumped together as intersex. This has more to do with social convention than science. Medicine as a social practice cannot escape the problem that classification systems often break down when faced with the real world. We may well reach a day when "true hermaphrodites" who do not have biosynthesis "defects, join Shodan, and decide that those of us who have biosynthesis "defects" are not really intersex. So, returning to CE, how are people born with aphallia not intersex?

Peter

CE and Intersex

Beware! I wrote this while watching teevee. So beware of an extra portion dunglish (dutch-english)….
Hi Peter!

The proces of sex differentiation is rather complex. But let me try to explain it in one paragraph. Only when at the right time the right signals are given and/or received, a body will differentiate to a male body. If nothing happens the body will remain (!) female. If the signals are too early, too late or in the case of a ‘false’ signal, some body parts will become what we consider ‘male primary sex characteristics’.

In every intersex condition there is a link to this process of sex differentiation. CE is a condition that is not linked to the sex differentiation. XY-children with CE had a completely normal sex differentiation: without CE they would have a normal penis. So it was not a problem with the sex differentiation that was the reason; it was the CE ( I can talk about another hour about the cause of CE, but that would not change the fact that it has nothing to do with the sex differentiation).

That is also the reason why most people in the medical profession will say that the Kallmann Syndrome is not an intersex condition.
Sometimes hypospadia can be caused by a problem with the sex differentiation (and those cases are related to intersex conditions) but there are also many other possible reasons for a hypospadia. That’s why hypospadia in itself is not an intersex condition.

You can’t say “atypical genitals equals intersex”. Ambiguous genitals or the absence of the expected genitals are only a symptom of several intersex conditions. BTW, if people with CAIS are women, you can’t say that they have ‘atypical genitals’ but we DO have an intersex condition. So, Peter, what’s your definition of ‘atypical’…

What (some!) XY-children with CE and David Reimer share, is that they lost their penis because of something that has nothing to do with the process of sex differentiation. They are not and never will be hermaphrodites. It’s like children who were born without arms because of the use of Softenon by their mother. Someone can lose his arms in an accident, but that has nothing to do with Softenon. Even though both situations seems to have the same result (someone without arms), from a medical point of view the condition is completely different because the use of Softenon may have had consequences for other parts of the body.

I can tell you that with CE the atypical genitals are the least of all problems. CE is a life threatening condition were body parts that should be inside the body are outside the body. Instead of thinking ‘hey, this might be an intersexed child’, the midwife will think ‘heck, this is not ’good, how can we safe the life of this child


And XY-girls are just girls! ;) Obvious the genotype and the phenotype are just two aspects that will form our sex. Boys are boys and girls are girls and that has nothing to do with having a penis or a vagina. For that reason I recognize that male to female transsexual people are female (and FTM are male). And yet, I also want to emphasize that transsexuality is not an intersex condition.
As I said before, both David Reimer and Shodan share that their situation is not related to the process of sex differentiation.
Not exactly genital tissue. In true hermaphroditism people have male and female gonad tissue. That can be in the form of ovotestes or the combination of one ovary and one testis.
But ‘blending’ is NOT a criterion for intersex. Ovotestes or a combination of one ovary and one testis are only symptoms.
CAH, AIS 5ARD, 17BHSD and several other conditions all have a (different!) genetic cause. Because of that gene defect hormones are not made by the body, are not converted to other hormones or are not able to connect to a receptor. This can have an effect on the sex differentiation. And again: the ‘atypical genitals’ are only symptoms of these conditions.
No, as said before, hypospadias can be a symptom of an intersex condition and in other case they are a symptom of another condition.
I guess you will understand that I will also disagree with you on this last paragpraph. You wrote ‘Here as many other areas of intersex, value judgements come before science.’ I feel that value judgement is only possible if you do that with science. Many people are in favour (or against) certain social and/or political topics while they are completely clueless about the backgrounds of those topics. Voting without knowing what you vote for, is one of the most dangerous aspects of democracy. (disclamer: this has absolutely nothing to do with elections that may or may not be held in any country or any region of this world, including, but not limited to, the United States of America)
Heck, I answered that question already. To save bandwidth I will not use Ctrl-C ;) ;) ;)
Groeten, Miriam
PS. YEAHHHHHHHHH, an hour ago the Dutch soccer team have reached the semi-finals of the European Championship 2004.!!!!!!!!!!!!!!!!!!! WE ARE THE CHAMPIONS – uhmm I wrote this email while the match was on teevee… But outside people are having a great party now.

Right that does it: Lets play the quoting game
 

You've shot to pieces your own argument, thats like saying without AIS you'd have a normal penis.

CE lead to me having abnormal genitals, just like your inability to react to androgens lead to your sex organs not properly developing.

This quote alone would rule out a number of other conditions being intersexed, and many would agree with me, that would simply be untrue.

Correction, my genitals weren't visually identifiable at birth, and doctors were forced to ask the question whether I was a boy or a girl, and sent away for chromosome tests.
Now since no-one could seem to tell what I was at birth, that would seem like I was intersexed, wouldn't it? (Don't answer that miriam, its rhetorical)

And in male hermaphrodites, there is XY genes, sometimes testes sometimes not, and ambiguous or abnormal genitalia, Hello???

And uh, What causes CE? You can't tell me can you? It could be genetic, it could be chemical too, but since you can't identify the cause of CE, you really can't rule it out as intersex can you?
All you have is that silly little quote by a researcher whose clearly not open to changing his ideas and opinions, merely observing.

How is it having the symptoms of intersex, not intersex???
You are no longer voiceing your opinions Miriam, now you are attacking my identity, you are passing judgment on a person you've never met, with a disease you have little knowledge about, all on the basis of some narrow-minded research.

CE is a condition that lead to me being intersex, I had atypical genitals, and Intersex was the result.
Simply accept this.
Or don't
But I'm going to have to request that you keep your potentially damaging beliefs to yourself on this matter.
You're opinions have the potential to not only emotionally harm me but others who use this forum too.

I will not go to war with you on this miriam, but I will fight to defend myself, because my identity is my own, and I will not allow your judgement to control me, nor will I let such insults walk all over me.

I'm a real bitch and or bastard on wheels when I get going, my anger only needs a target.
And I would much rather simply put this issue behind us rather than be harrassed because I know I am something that you think I'm not.

PS. PETER, thankyou for standing up for me, I'm glad that there are others more willing to understand that CE is and does result in a physical Intersex condition.

PSS. If it was F***ing up to me, I wouldn't be intersex, I'd have my testes, I'd have been raised a boy, I couldn't care any less and I wouldn't have to have this bloody stupid argument. And btw, in that photo link: http://bms.brown.edu/pedisurg/Brown...lExstrophy.html
Tell me if thats a boy or a girl!
Cuz that aint no dick and balls, its a healthy serving of bladder, muscle and bowel, cheery!

If its such an issue, I can scan some of my great lookin baby photos, then we can all debate whether I'm a boy, girl or intersex, just like the F***ers who screwed around with me needlessly in the first place!!!
Why do you have to lower yourself to their level?

Shodan,

It seems that you have two personalities; one you use to send me emails that can’t be read by the other members of BLO and another personality that is posting here.

In my precious post I tried to explain the role of sex differentiation for intersex conditions. If you want to read almost everything about sex differentiation, you have to read this article: http://www.contemporaryurology.com/b...00/u1a043.html

You can read whatever you want about CE and sex differentiation and you will see that there is little known about the cause of CE, but all authors agree that there is a normal sex differentiation


This will be my last message about CE. But before I stop writing I want to make a few remarks.

First, I’m just the messenger. I tell you how people in the medical profession think about CE and why they don’t call every genital malformation an intersex condition, that’s all. If those people have another opinion than you have, I would appreciate it when you would give me links to other research and researchers who agree with you instead of the ‘doctor bashing’ and ‘miriam bashing’ you started now.

Second, if you are happy with your own definition of intersex conditions. Well, live your life and be happy with it. But don’t expect others, especially doctors, to change their mind if you only want to attack them.

But please mind your language…
Reiner and Gearhart are definitely not the kind of people who you can accuse of making ‘silly little quotes’ and they are more open minded than you think they are. They are the people who are trying to convince other doctors that changing XY-children with CE into girls is bad medicine. In other words; you better see them as two of your best friends. It seems to me that you haven’t read their publication, otherwise you would not talk about them the way you do now.

Bullshit! Your statement here is a below the belt attack. And that is one of the main reasons why I won’t discuss CE here anymore.

Request granted. But that will not change how medics will see CE. Especially because it has nothing to do with my ‘beliefs’. Again, I’m just the messenger. Be happy with your identity, but there will come a day that you will agree with me. That’s to say… I hope for you that that day will come.

Miriam

Unity, diversity, and what is intersex?
 

Hello Shodan.

Let stop the animosity before it begins, please. This forum has a

moderator. No one, I think, has the right to tell anybody not to

respond to a post, as long as they aren’t mocking or ridiculing

anybody, this is a open forum. If someone has said something

damaging, the moderator can—and has in the past – stepped in

to limit those comments. That has not, it seems to me, happened

here. Instead, an examination of the relationship between two

topics – CE and sex differentiation – has transformed into

misunderstanding between anecdotal (individual) experience,

and data gathered from a variety of sources. What was about

semantics—in the best sense of the word—has now become a

battle between feelings and facts. Look, I know, there is a lot of

argument about what a “fact” is—that however, is semantics in

its less desirable form.

I think a few statements beg to be considered carefully. First of

all, Judgement – and judgement of individuals. Judgement

is about what is “good” and what is “bad”. (Or what is right or

wrong…) Accuracy of description, and disagreement over

terminology does not constitute judgement here or anywhere

else. Several people have gone out of their way – including

Miriam—to make clear that a variety of people with a variety of

viewpoints are welcome at this site.

That is the standard for Bodies like ours—to warmly welcome

people, even when they have information different from one’s

own – rather than to muzzle statements that other people don’t

want to consider.

Intersex is such a new term, who used it first?

Why? And in what context? I myself have only known about it for

a few years. We are all grappling with its meaning, its

boundaries, and its implications. No one is trying to impose

an “acid test” to find out who belongs on this the site and who

does not. We just want to learn more about everything, about

people with bodies like ours. Flatly rejecting any information at

this early stage, no matter how unpleasant the information is, is

a dangerous step for us as a group. We need more info. If we

don’t have these discussions, someone else will – and they will

be the ones defining us. Better to be proactive than passive.

Remember that most physicians and specialists still do not work

with a category of people called intersex, but rather try to isolate

and define each instance relatively separately and independently.

That is one of the reasons why so many of us have had such

radically varying experiences – there just isn’t a lot of agreement

on intersex, despite a lot of research going on now. :confused:

Still, many of us here have had experiences so horrific that they

can only be expressed in expletives. I think many people can

relate to the depth of emotions that brings that type of language

out in us but it’s really important while we work through these

issues to maintain a level of respectful address toward each

other. If we start mocking each other, it lowers the standard of

the group. The moment language becomes anything other than

descriptive in point by point argument, we lose the ability to

support or be supported. When we move to the editorial in

argument, it is no longer argument, but a fight.

Look, I know this is tough stuff, :( but let’s hang in there

together—no matter how different we all are, even from each

other.

Remember, always, that if you are deeply offended by something

someone says, private messages are a REALLY good way

of working out tough topics, and at the same time, making much

closer contacts with other members – who may turn out to be

incredibly important resources and friends-- We get so much

more out of each other by struggling with these issues, but never

letting ourselves turn our backs or crossing the line of hostility.

Okay everyone, it’s good to be angry sometimes – but then we

have to work through the anger and see where it can move us

forward to trust each other, versus where anger simply stops us

in our tracks.

I think Shodan has asked an astoundingly important question in

the last post and I am worried that it will get neglected for other

issues – what causes CE? Wow, what “causes” CE!?!?!

Cause is such a crucial and mystifying thing—even after 35 years,

none of my doctors has been able to explain what caused me to

be born without a phallus (Aphallia, Miriam?) Wouldn’t I like to

know!!! ???? And yet, if I did know – just what would I do with

the answer now? :confused:

[color=dark red]This week’s motto: Unity from diversity! The more different we are, the more we must hang in there for each other.[/color]

End Of This Thread
 

I have been asked to close this thread by a concerned Bodies member. In putting on my moderator hat, I am seriously considering closing this thread to further posting, but will not do so at the present time. Jules, in the post before this one, made some very good points about member behavior on this forum. I will not repeat what she said, but will note in passing that private messages are often a great way to communicate and build trust among Bodies members.

As this thread is getting very long, I ask that people voluntarily not post more posts to it, but rather start another thread.

Peter