anyone is entitled to their medical records

[Night Crow]

Got a surgery that you know nothing about ? Parents a little vague for you ? Not to worry !!!! Because of the Right to Know Act of the 1970's, You are entitled to an unaltered copy of your medical records. Just write or call the hospital where you had the surgery done. Tell them the roughly the time period the surgery was done and for a small fee, you can now know why you have those mysterious scars on Your body!

Caution: Be sure that you really want to know this stuff, a therapist isn't included with the medical records but one sure might be helpful !

Night Crow

[beach]

i've had nothing but the run around, most hospital staff that i delt with have not helped.law or not.

[Jamie]

I have learned that the surgery would have been done during a period of time that my family moved around alot, so I would need to pay for records that exist in every hospital in areas that I lived and I cannot afford that. I did find out (by way of a dr visit) that my suspicion of having "intersex hypospadia" was correct. My Dr seems to agree with my theory.

He thinks that the scars are indicative of this as well. He goes on to tell me that the Clitoris would have been enlarged enough for the medical community to have declared it as a penis, and surgery performed accordingly. This also completely explains my history of suicide attempts, acts of violence against anyone trying to force me into things, depression and never ending bladder infections.

There is more, but I dont think that the board moderators would like to have a medical symposium on here. There is enough info to write an AMA (American Medical Association) article.

[Betsy]

Actually, that would be fine:

There is more, but I dont think that the board moderators would like to have a medical symposium on here. There is enough info to write an AMA (American Medical Association) article

There aren't any restrictions beyond being polite here. In fact, it is one of the reasons for the board :p

I got your last email but on Monday and Tuesday I have a paying job in NYC and so I don't get much time to spend on Bodies stuff those days. I just wanted to let you know I hadn't forgotten about you!

Betsy

[claraJane]

You may be better off spending your money on tests than on records. Most IS conditions are detectable even after the "evidence" has been destroyed.

The family pediatrician had a convenient office fire. The hospital had three pages of records. They all seemed cooperative but I still got very little. Testing got me much more information.

The doctors fought testing as well. I had to pay for the initial karyotype. My doctors dismissed it as a fluke and a lab error until two others confirmed the results. And then they still refused to do the ultrasounds that the AAP protocols suggusted. A friend who teaches ultrasound finally did the ulttrasound for me gratis. It showed clearly what I'd suspected.

Shoving it in the doctors' faces hasn't helped my relationship with them but it's sure gotten me better medical treatment.

Kind regards,
Jane
xy/xo

[Az1]

Hi ,
I have recieved my records in life when I had found out that I was XXy. Sure the records are fine . Although it would take a chicken scratch professional to figure out what they had inputed on those white pages.
I had surgery but like most I was never told the truth.
That is when I said I will go to the doctor and get my records .
I did not have any problems getting the records .
Since then the Records are just keeping dust.
I have just accepted my being and have been trying to live a happy life.
Az1

Muhoe

[Aimee]

I needed the names of the men that performed the clitoridectomy and vaginoplasty( I use that name loosely because it implies that it is fixed and some how looks better, it doesn't) Fore mostly, I wanted to tell them that I forgive them for what they did to me. They are nothing but puppets of the socialtal norms. I wanted to know why they went ahead and did what they did even though the psych department of the same hospital stated that it is recomended that child wait a few years on genital surgeries.( I have the records. ) I knew what I had wasn't quite right but yet it didn't bother me. I wanted then to know that they didn't make things better, they only made things worse. Today, even my Mom agrees that the clitoridectomy and vaginoplasty is causing problems in my life right know. They were lied to also, just have the surgeries and everything will be fine. My dad even read books about the subject in the library. They put their trust in the medical people of the time. The people that were suppose to know but what did those doctors care ? nothing but an experiment to them.

Wrong civilization for me, should of been an Indian.

History question.
Who was the English man that invented the clitoridectomy?
- I read it in a medical history book but I returned it. Does anyone know the answer ?

Peace to you all

[Aimee]

I wanted to ask if surgery that is done for Klienfelter's (sp ?) syndrome XXy is similar to the outside cosmetic surgery done on people with CAH ?

Or is it mostly an inside the body thing ? I guess what I am trying to ask is that does someone with this syndrome have ok looking genitals compared with someone that has butched genitals which is the case for some of us with CAH.

I'm just trying to understand different state of "minds". Someone that has a small scar where the surgeons took something out may have a different mind set compare to someone that sees the surgeons "butcher job" every time they go to the bathroom.

I'm just trying to learn and understand. I want to know about the other "intersex" terms that are the umbrella with CAH.

Respectfully yours,

Aimee

[Az1]

hi Aimee and other individuals out there in a state of mind.

Yes, I am a klienfelters recepient of XXy and with surgery to correct the meaningless function of a penis , and to incorrect the opening of a vagina . ( butchered to achieve a male status )
At the time of my surgeries I was to appear to the world as a
" male ".
Although I had always felt something has never been complete within me. I was then clipped and snipped and my family was told I would be fine.
I joined this site because of my own differences that I have and had to deal with in life .
There are many individuals born with adversities everyday .
I think that this site helps the ones who have never experienced
these issues . Or who have to live life of indifference.

I came here wanting to share my feelings either good or bad.
Betsy had fulfilled my request and " Poof " I am here .
I can only relate to being in an Intersexed state of mind because that is all I know. I do not know what it is to be "male , nor female ". One day I will be az 1.

Muhoe

[Glenn]

As for the clitorectomy issue, I found this:

"In fact, Western surgeons claimed to have invented clitoridectomy. English gynecologist Isac Baker Brown, notable for his innovative acumen, promoted excision in the early 1800s." from http://weber.ucsd.edu/~dsilva/Obiora.htm.

Another source citing him is http://www.cirp.org/pages/riley/sexsurg, where they say "While (male) doctors could never quite convince themselves or the public that the proper treatment for male masturbation was penectomy, they did convince themselves and at least some women that the proper treatment for female masturbation was clitoridectomy. The credit for this discovery belongs to Isaac Baker Brown, a prominent London surgeon who later became the president of the Medical Society of London. He introduced the operation of clitoridectomy around 1858, because he believed that masturbation caused hysteria, epilepsy, and convulsive diseases."

Others ascribe its invention to various African tribes, typically Sudanese or Somali. "Clitoridectomy was invented by Sudanese midwives as a compromise when British legislation forbade the most extreme operations in 1946." from http://www.fgmnetwork.org/intro/fgmintro.html

Frightening to see how far we haven't come in nearly 150 years.

Glenn

[Aimee]

To Glenn:

Thanks for the 411. The United States could land a module on the moon in the 60'S but to quote the butcher, " In 1975, the recommended treatment in all major medical centers for Adrenal Genital Syndrome [CAH] was clitorectomy and vaginoplasty."

That surgery is one of the most inhumane things a human being could do to a child. If they can't do it right and gaurantee it then don't do it. Doctors are supposed to follow that creed "do no harm." It didn't apply to me OR others. I'm going to see that surgeon soon, I can't wait.

The surgeries only made it worse. A deep gash and scars is not better. Down with surgery and up with counseling but only if the child wants it. Shame is taught, kids think their bodies are wonderful until told other wise. When I think about it rationally, I would of done the same thing my parents did and signed the consent forms for the surgery, they thought they were doing the right thing. They read the books of the era by Guess Who? which told him children with CAH ned these sugeries now! and the doctors told them it was the best thing. I don't blame anyone. They were just following social norms. Some of us don't fit into those social norms. I dream of a day when parents of children with ambiguous genitals will say, "She/he will have surgery when they want to..... no big deal."

You can't fake who you are without eventually going insane. They tried to stuff me into a gender when in reality, I float inbetween both of them and that is where I'm truly at peace. I've felt like this my whole life, it was instinctive when I was younger and that's why what I was born with never bothered me. Maybe, I am gender challenged ( lol ) and that's not a bad way to be.

Aimee

[claraJane]

Dear Aimee,

Unfortunately the surgeries continue. I have a friend that was bullied into allowing "corrective" surgery on her daughter. They didn't tell her that the clitoris would be completely removed. They didn't tell her that they were going to do a vaginoplasty on her toddler. And it wasn't until she spoke with me about it that she first heard the word "dilation" used. She thought I was nuts until her doctor confirmed that the parents choice might well be between dilating their child and another vaginoplasty when the child was older.

Is it comforting to know that some of us chose vaginoplasty to get out of that gender no-man's-land? My surgery was performed in a hotel room because vaginoplasty on a consenting adult was considered unethical by the local hospitals even though it was ok to do the same surgery on a screaming infant. Funny, they didn't tell me about dilation until after surgery either.

Kindest regards,
Jane

[A.P. Morgan]

Dear Jane:

I'm glad that you are happy to be out of "no - man's- land" as you called it. I was puzzled about you comment about you having trouble getting a vaginoplasty as an adult but then I realized that you have a different type of Intersexed condition than CAH and that maybe is where the problem happened with the "medical establishment."

A female with CAH has no trouble getting any genital surgery as an adult. I know of three women with CAH that went in for clitoral surgery as adults. A few studies have been done that show the longer the wait the more positive the outcome is. I've been thinking about going in for an up- grade my self.

The clitoridectomy and first vaginoplasty (they made a hole with scars ) was done to me when I was five years old, this was done with no regard to the psychological tests that were done on me that stated to wait on any surgery, the best thing I ever did was aquire my medical records. The second vaginoplasty reconstruction (they made a bigger hole with scars) was done when I was 21.

These surgeries didn't take me out of no-man's-land, my brain is what decided what I am and not the physical appearance of what is between my legs. I'm quite comfortable as a mixture of male/female because that's where I was meant to be and that's were I'm most at peace.

Screw convention, I've had two nervous breakdowns trying to act in just one gender role, I will take on the role of female most of the time because it suits a purpose but my natural self is definately between male and female ideals. I enjoy floating back and forth. Gender is subjective anyway (lol).

I am happy that you have finally acquired the gender that you feel comfortable in. It's bad that the doctors don't listen to the actual patient in front of them but perfer to quote other doctors theories which don't match every individual.

Although, the surgeries of choice for the last 25 years have been the clitoral reduction or ressesion, it doesn't suprise me that they did a clitoridectomy on that baby. Well you never know what happened in that case.

I think the surgeon that told me they didn't do clitorectomies was feeling guilty. A clitorectomy is disfigurment and nothing more. As for those dialators, I never had to use them with any of the sugeries, I guess they used different techniques. I even asked the surgeon if it would close up on me he assued me that it woudn't and he was right. Silly man, He even told me to don't go wild now. I guess he over looked that the gash from the clitoridectomy and the scars plus having no sensation would be a mood killer. I would of perfered the ambiguity over this. This isn't easy, the surgeon and my family had best intentions in mind for me, I don't blame anyone. Some of us just never where meant to fit into the cultural norm AND that's OK.

Best Wishes,

A.P. Morgan

[claraJane]

Hey A.P.,

Thank you for your kind reply. :)

My observation has been that treatment of fertile intersex patients tends to be gonad-centric and treatment of infertile intersex patients tends to be genital-centric.

I'm xy/xo. XY ordinarily results in male (although there are plenty of IS exceptions to that rule). XX ordinarily results in female. A single X results in a female with Turners Syndrome. When you have both XO and XY cell lines most anything can happen.

Now for gross generalizations based on the medical literature...
90 percent of xy/xo kids are born with normal external male genitalia, 5 percent with normal female, and 5 percent with ambiguous genitalia. Of the 90 percent born with normal external male genitalia about 20 percent have ovarian or mixed gonadal tissue. In Turners syndrome the ovarian tissue degenerates quickly, usually prior to birth. Mixed tissue tends to do the same thing. With mixed tissue one can end up with male appearing external genitalia and still run out of testosterone long before birth. Xy/xo mixed gonadal tissue is also so prone to cancer that it is removed as a standard practice.

Most xy/xo kids are tiny and most remain so as adults. Some, like me, also have visual-integration problems that make complex coordination skills difficult.

My genitals were technically ambiguous although I've argued that the term is misleading. For the sake of argument you can class me with those who had masculine genitals but no testosterone production after the genitals were formed. I had a wonderful childhood but there came a time when people expected me to start acting like a boy. Could they make me big, strong, and agile like the boys? No. Could they make me develop sexually like a boy? Yes, but I liked my feminine features just fine thank you. I wanted a life. I wanted a family. I also wanted to remain me.

I'm certainly no expert on CAH. Are there CAH people who have masculinized genitals who still have functional ovaries? Is there resistance to someone with CAH who was raised female but who decides to live as a man? You said that surgery was readily available but isn't that primarily to "normalize" to female?

Kind regards,
Jane :)

[A.P. Morgan]

Dear Jane:

Sorry about the late response, my new job has taken me away from viewing the message boards as much as I like. Thanks for the 411 on the other medical conditions.

A female with CAH only has female chromosomes and internally only ovaries and a uterus, there are no testes palpulated . The intersexed part comes in when some of us are born with the outside genital area looking neither male or female. This is do to the bodies lack of the ability to make cortisol to different degrees. By not having the cortisol in the body, androgens are free to wreck havoc with the external genitals.

As I was getting an exam from my Gyno, I was joking with him, it's not a boy it's not a girl ...what the heck is it ???? My Gyno is a sweet man and understood my dry sense of humor but the look on the nurses face was priceless.

When I was born they told my bio parents I was a boy, then they said an hermaphrodite, I was promtly given up for adoption. Later it was found from genetic testing that I wasn't an hermaphrodite but just a biological female with Congenital Adrenal Hyperplasia. Because of the ambiguous genitals I also was called a pseudo hermaphrodite which is fine also. These are all just medical labels which I do feel have a place in that arena.

Generally speaking someone with CAH has functioning ovaries. I know I do, it has been clockwork since I was twelve years old. I recently went to the gyno/obgyn and her confirmed that I have a "normal uterus" and ovaries. We did an ultasound and were looking for cysts but there weren't any. I think the people with late onset CAH might have trouble with their ovaries but I'm not sure.

I know of three women with CAH that have kids. The ambiguous genitals come in different degrees. Many women with CAH don't have any virilization, most have a small amount and a few have or (slice) had severe ambiguity.

The surgery is there to "normalize" the patients. It didn't make it normal for me, it only made me look butchered. If they can't make it better, don't touch it. Do no harm ....YEAH right. I was fine the psych reports stated so but yet the surgeons went against it. I'm forever scarred because I WASN'T BORN LOOKING like the norm. They say they clitorectomy was the standard medical procedure for that era. The surgeon said he was sorry.....I'll be seeing him soon.

I don't know if there are females with CAH that want to transform into men but I imagine they are out there. With the way things are most likely they would have the same trouble that you did trying to get help to become the gender that you can identify with in your soul.

I'M GLAD THAT YOU ARE HAPPY WITH WHO YOU YOU ARE. I don't think it is fair to stuff someone into one gender and I'm glad that you were able to get to where you were meant to be in spite of the well meaning counselors.

I am female and the way I keep my sanity (smile) is to except that my broader view of what someone with the female gender feels and does is natural and OK.

Respectfully yours,

Aimee