gender assignment for cloacal exstrophy

[The Female Eunuch]

Hi all,

I just discovered something which feels weird because of its apparent arbitrariness.

As I've read on the Internet about Cloacal Exstrophy, the diagnosis that best fits what doctors have told me about my body, I've noticed that it seems most genetically XY people with Cloacal Exstrophy have been raised as female. This led me to wonder, why was I one of the few who were raised as male?

Now I think I've found the answer. I've been reading a paper on gender assignment for people with Cloacal exstrophy, which says that XY babies with Cloacal Exstrophy have been assigned female 'for the last 25 years'. The paper was written in 2004, so that suggests the practice started around about 1979. I was born in 1976.

So, it's not due to something different about my body, or having doctors who had their own ideas about how to do things. It's just because I'm older than those other people, and things were done differently back when I was born.

So by the time I was being sent to a psychologist to convince me that I was a boy, the medical establishment had changed its mind and decided that people like me should be raised as girls.

Knowing that is a very strange feeling.

cheers,
Caroline

[Dianne]

I've noticed that it seems most genetically XY people with Cloacal Exstrophy have been raised as female. This led me to wonder, why was I one of the few who were raised as male?

It has been my perception that most doctors were male and most doctors had a preference for creating males if it was surgically practical. ("Why would ANYONE want to be a girl!" mentality.)

(In my case I believe that was the case since I was to be put up for adoption and males were more salable!)

The paper was written in 2004, so that suggests the practice started around about 1979.

I would suspect it had more to do with available surgical techniques. I am certain that the pro-male prejudice goes back to early medicine. Undoubtedly the ability to create "acceptable" female genitalia improved more rapidly and that would have been a big influence in assigning to female, the ability to keep it secret more effectively and for a longer period of time.

So by the time I was being sent to a psychologist to convince me that I was a boy....

LOL! Didn't "stick" for you either eh? (Sorry but from my point of view, in retrospect, it is laughable! It was so bloody obvious to everybody that I WASN'T - I just find it ludicrous that they TRIED!)

[fraulein_Maria]

[QUOTE=The Female Eunuch;16832]


So by the time I was being sent to a psychologist to convince me that I was a boy, the medical establishment had changed its mind and decided that people like me should be raised as girls.

Knowing that is a very strange feeling.

>>> they have changed its mind about more than you...

there are some PAIS'ers raised male and some praeder 5 CAH's raised male... but you won't find a single one under the age of 40. I think its partly due to the prejudices and medical improvements that Diane posts about above, but i also think there is a far more compassionate reason.... one which IS mommy and another who had come here earlier are ignoring thanks to the 'posers......

Being male is deadly serious business, and if you don't measure up, you will not have to face shunning like you do among woman-kind... but death... and usually an extremely violent one.

As a mother, if i had any doubt at all that my "male" child would have any difficulty living as male.... i'd want GUARANTEES that the doctors could fix it. I know that they can't give those. And any doctor that does is an arrogant DICK HEAD who wants to use my child to refine his "skills" not help. I have seen too many "men" who could not measure up beaten to within an inch of there lives.... Can anyone say Mathew Shepherd?

So as much as the 'posers irritate me, i know the place SOME of them are coming from. Its just that so many MORE are coming from a much nastier place, that they "take over" and prove to me and any woman watching just how manly they are.... and drown out the voices of those who really are female in there souls.

Give me a daughter who can live in this world... don't give me a son who must be sacrificed on the alter of male vanity. Even the ones that live through the experience are a shadow of the sweet boys they once were.

i watched my brothers grow up ( i am quite a bit older than 2 of them). I watched them all fight off becoming clones of there father... 3 of the 4 were successful. 2 became men i'm proud to call my brothers... the marine? well, he's in Iraq now... so i'm praying he will see so much death, that he will throw away his rifle in disgust, and at last become a man that treasures peace.

[The Female Eunuch]

Maria wrote:there are some PAIS'ers raised male and some praeder 5 CAH's raised male... but you won't find a single one under the age of 40. I think its partly due to the prejudices and medical improvements that Diane posts about above, but i also think there is a far more compassionate reason....

At this point I think I should throw in another statistic I picked up, which is that it seems about two thirds of the XY people with cloacal exstrophy who were assigned as female rejected this assignment and are now living as male.

George Bernard Shaw once said 'do not do unto others as you would have them do unto you - their tastes may not be the same'. Of course it would be wrong to describe gender as a taste, but I wonder if you're subconsciously assuming these people will be comfortable with a female gender identity just because you are.

In response to your comment about PAISers raised as male, I used to be friends with a woman who was diagnosed with PAIS at age 13. Prior to that she had been raised as a girl, but once she was diagnosed with PAIS, her doctors insisted that she was really male, and gave her a high dose of testosterone to turn her into a man. She rebelled after 4 years and ran away so that she couldn't be forced to take her pills any more. This was in Australia in the 1960s.

Being male is deadly serious business, and if you don't measure up, you will not have to face shunning like you do among woman-kind... but death... and usually an extremely violent one.

surely that's only true if you live in a very violent part of the world?

cheers,
Caroline

[Dianne]

.... her doctors insisted that she was really male, and gave her a high dose of testosterone to turn her into a man. She rebelled after 4 years and ran away so that she couldn't be forced to take her pills any more. This was in Australia in the 1960s.

OMG! That's what a doctor suggested to my mother when I was 15 (also the 1960's). I was a pretty easy-going kid but I threw a hissy-fit at that suggestion! I was upset enough with a 50/50 puberty but THAT was going the wrong way.

[fraulein_Maria]

[QUOTE=The Female Eunuch;16839]


surely that's only true if you live in a very violent part of the world?

>> no, just a very homophobic one. Thankfully, i do not live there anymore. <<

[Peter]

Hi Caroline,

I have read the same statistics concerning sex assignment and cloacal exstrophy. Although one of the doctors on the ISNA mendical advisory board, once suggested that I had a form of cloacal exstropy, I now find that, in my case, campomelic dysplasia is a much more likely condition, as it combines genital ambiguity, severe hip hyperplasia, and club foot. Hopefully, one of these days I will be able to get full genetic sequencing of the region of the SOX-9 gene. As a teenager, I took medications to promote my development as a male, which was my original sex assignment. I have never really felt male, but I will also admit that on a very basic level, I don't know what it feels like to be female. On a good day, I think that I am a gender blend; on a bad day, I feel like a failure in my assigned sex. I try to avoid the arguments around intersex vs. transsexual, because they only seem to make everyone involved unhappy. In the end, I believe that individual happiness is important. I don't think that so-called scientific progress will ever resolve the intersex vx. transsexual debate, and that the issue will always be with us. I believe that it would be better for some people to concentrate on correcting their sex assigment rather than waste too much time investigating intersex issues, expecially when that investigation can become an obstacle to personal growth and happiness. I am not saying that this applies to you, but is rather a general observation.

Peter

[fraulein_Maria]

[QUOTE=Peter;16846]Hi Caroline,

I believe that it would be better for some people to concentrate on correcting their sex assigment rather than waste too much time investigating intersex issues, expecially when that investigation can become an obstacle to personal growth and happiness.

>>> i agree... especially when that investigation takes up OUR very limited resources. Its hard not to get angry when there is so much support on-line for those who wish to have surgery....

It feels like this....

There were only 2 bathrooms for us (6) kids in the house.

One conveniently upstairs and large for my 4 brothers, the other a half bath downstairs for me and my sis to share.....

You know those jerks insisted on pigging up our bathroom, using all the paper and other self care products...

i swear if they had thought of a use for pads, they would have used those too! they did find a use for tampons... they apparently make wonderful paint brushes.

They had no shortage... they just used our stuff first.

Male privelege means they not only get there share, but are entitled to ours aswell, and we have no right to so much as protest.

I'm protesting.

On behalf of every ISer that ever came here and left because they couldn't handle the BS.

That does no make me male phobic. It does not make me trans phobic. It means i have the self-esteem to believe that i really do deserve a place for me, my sisters and brothers .....

who share the horror of a medical condition that society insists on removing the evidence of.... while real treatment falls by the wayside.

[The Female Eunuch]

Peter wrote:try to avoid the arguments around intersex vs. transsexual, because they only seem to make everyone involved unhappy.

Maybe you're right. It wasn't one of the issues that concerned me when I decided to join BLO - I came here because I had questions about sexuality, not gender. If I had come here with gender issues, I would have chosen a completely different username.

I guess I feel inclined to argue when I think people are presenting intersex issues as a way to 'prove you're not transsexual', probably because it has led to some people thinking that I am using intersex identity to prove I'm not transsexual, or that I'm better than a transsexual. I actually find that insulting when my main concern is whether it is possible for me as an intersex person to be a sexual being.

I think that's related to what you meant by:I believe that it would be better for some people to concentrate on correcting their sex assigment rather than waste too much time investigating intersex issues

cheers,
Caroline

[Peter]

Hi Caroline,

There are many things that I find interesting about your story. One, is that like me, you were born with many medical issues, one of which was ambiguous genitals, which as I remember relates to your repeated hypospadias treatments. Having multiple medical conditons opens up a whole range of issues. I feel deeply ambivalent about many issues. One is survivor's guilt. My fraternal twin died shortly after birth, and most people who have a range of medical conditions like mine, die quickly after birth. I know that the same is true for cloacal exstrophy. Another issue for me, is that as a March of Dimes child, I am greatful for the extensive medical treatments that I received, but am also angry about the lack of information from the treating hospital. I myself am asexual, and have spent much time wondering if the asexuality is due to the trauma of early medical treatments, including infant genital surgery, or whether it is due to having hormone levels that pre-dispose me to asexuality. Good luck on finding the answers to your questions.

Peter

[The Female Eunuch]

Hi Peter,

thanks for your comments.

you wrote:One, is that like me, you were born with many medical issues, one of which was ambiguous genitals, which as I remember relates to your repeated hypospadias treatments.

Repeated hypospadias surgery was part of it. Also, more recently, I had an artificial urinary sphincter installed. It's in roughly that area, and I've had 5 operations for that, too. I also had to have an anus constructed as I was born without one, and I think they had to close up holes where my rectum met my urethra and bladder, so that's quite a bit of scar tissue in that general area.

I have also often had this weird feeling as if I expect someone to sitck something up my bum. It's hard to describe in that it's a mildly unpleasant feeling but not a big fear. I never knew what to make of it until my mum told me that when I was a baby she had to stick something up my bum twice a day for several months to stop it closing over.


My fraternal twin died shortly after birth, and most people who have a range of medical conditions like mine, die quickly after birth.

Yep. I've been conscious of that too, though maybe I haven't had the same degree of survivor's guilt as I didn't have a connection like that with anyone who had died of a similar condition.


Another issue for me, is that as a March of Dimes child

sorry, don't know what that means.


I myself am asexual, and have spent much time wondering if the asexuality is due to the trauma of early medical treatments, including infant genital surgery, or whether it is due to having hormone levels that pre-dispose me to asexuality.

I guess I'm pretty much asexual, too. But I get hormones in tablet form, so it appears not to be a hormone issue in my case. However, I do suffer from chronic pain, which is another thing that could be killing my sex drive.

And one last question: I note that you said INFANT genital surgery. What age was that?

My hypospadias surgery was between the ages of 4 and 13, which seems to be older than other people I have talked to.

hugs,
Caroline

[fraulein_Maria]

[QUOTE=Peter;16860] I myself am asexual, and have spent much time wondering if the asexuality is due to the trauma of early medical treatments, including infant genital surgery, or whether it is due to having hormone levels that pre-dispose me to asexuality.

>>> though i'd say its more likely the former than the latter, there is also something else to consider....

Asexuality is normal.

Not average. But normal.

There are physically "perfect" specimens out there that just don't give a fig about sex, for whom relationships are WORK only, not pleasure. <<<

[Kailana]

Your questioning thoughts on why you were reconstructed as male, when most are raised female, mirror my own thoughts. I believe in all reality it is the phallus lenth really, if there is enough there, then doctors will push a male reconstruction nearly every time. Which really makes it that much harder for people like us to accept their choices. Intersexed for whatever reason, it is us that has the right to chose what we are rather then being forced into a gender that does not fit us. Phallus size does not make a man haha, well you know what i mean, But many many doctors seem to think it does.

Peter thank you tons for sharing, I do know I have heard you mention before some of your feelings concerning yourself. I appreciate reading your thoughts as I do believe they are relavent to help people understand what having an intersexed condition can do to a person. Asexuality is not ideal for anyone, everyone should have someone regardless of the reasons why we were reconstructed as men or women, we still have the ability to love and be loved. Sorry if I am intruding again, but well you know, I do think you are an amazing person. And while I have a preference for women, Peter you are a very special person to me, your strength of character has many appealing qualities I am sure many people including myself would find attractive.

[The Female Eunuch]

Your questioning thoughts on why you were reconstructed as male, when most are raised female, mirror my own thoughts. I believe in all reality it is the phallus lenth really,

well, if you had read what I posted above, you would see that it points to a completely different explanation. Namely, that the difference is that I was born a few years earlier than those people, when a different protocol was considered standard.

I've heard the explanation about penis length in a number of places, so I don't doubt that it is a factor that is often taken into account. Another thing I have wondered about as a deciding factor is the potential for constructing a vagina. I have never heard of this being used as a reason to assign someone as male, but I have also never heard it suggested as being impossible, except specifically in relation to me because of the weird shape of my bladder. But based on what I've read about the conventional wisdom for cloacal exstrophy changing in the late 70s, I'm now inclined to think that probably wasn't a factor either.

[Peter]

Hi Caroline,

The March of Dimes was, and still is, a major medical charity organization in the United States. It was particularly well known in the days when polio was still a major medical problem. It had much prestige, and as my mdical treatments were funded in part by the March of Dimes, it was something of a badge of honor in my family that I was a March of Dimes child. My infant genital surgery was done in the first year of my life. I also understand that they also did other surgery for my hip hyperplasia , but my father did not provide too much information about this surgery, except to say that some of my scars were related to the treatment of that condition. I have a massive scar on my left leg, which must have covered almost the entire front part of my thigh at the time. That was from ulceration of the leg, when it was in a cast for treatment of my leg problems. They was to repeat the leg casting a second time. My club foot was treated, in San Francisco, after my parents moved to California when I turned one year old. I did not have repeated surgeries throughout my childhood, as you had. I could imagine that being very traumatic.

Peter

[The Female Eunuch]

Hi Peter,

the surgery itself was never traumatic, because I slept right through it. Seriously, I don't remember a time when I had any fears associated with surgery at all.

I guess the other stuff - the medical inspections, pushing things in and taking stitches out - was traumatic until I was about 11. I do remember being told off for wriggling, and being given lollipops to stop me from screaming, so I guess it must have been traumatic for me than.

Later I learned to cope with it very well. Unfortunately I now find that emotional switching-off response automatically kicks in during sex, so I can't enjoy sex unless I learn to stop that happening.

I sometimes think those experiences resemble what I've heard about sexual abuse - people doing strange things with your genitals, initially having to bribe you with sweets to let them do it, and later you learn to emotionally switch off.

cheers,
Caroline