how do "they" know

[JOS]

There are probably thousands of people in the world with an IS condition who don't even know about it... no-one bothered to tell them!

How would you gather accurate scientific data on all those people. If you couldn't reveal their condition to them... you also couldn't question them on their satisfaction with their surgeries (or even just their life in general and how they view themselves) to KNOW that was the correct decision?

Therefore, there COULD NOT BE a "scientific" argument to validate a pro-surgery attitude... it must be based on what individuals THINK!!

Has there been documented studies where there have been control groups...
for example:

no forced assignment... then regularly checked to see how they feel
forced assignment with no need... to see how they feel
told they're IS when they're not... see how they feel

sorry I'm being a bit flippant... I'm sure there would be ethics committees up in arms over THAT !!!

but on the flip side ... it must be argued that if there are thousands who are not complaining... then there must be a fairly good success rate from said surgeries and subsequent follow up treatment?

[Kailana]

or at least thats what most of the doctors say regarding follow-up studies.

There has been small studies done, usually by a doctor or group of doctors studying 1 type of condition, but i tend to think that in those groups, the results are biased by the doctors themselves. They do not do proper scientific studies, but claim their patients are happy as the gender they have been assigned. I would love to find a report/study where the patients thoughts were expressed instead of the blanket, They are happy in the gender they were assigned.

I really think the few studies done, only show that the doctors are reporting their patients to be happy, no control groups were ever done, no personal comments ever expressed.

oh, and the Doctors say there are no follow-up studies, because no-one has bothered to do them. So they do not know if their patient's are happy, but they believe they (the doctor's) are doing the right thing, becuase they feel they are doing what is in the patients best interest.

My opinion differs, because I like many others, have serious issues with what has been done, and am not happy with the repeated surgeries and medical neglect I usually experience when dealing with doctors. Fact is my faith in doctors is so broken that I purposely ignore some health issues, because I do know how bad a person with an intersexed condition can be treated due to bigotry and discrimination.

[Dianne]

I may be mistaken but I seem to remember a small follow-up on 7 (or was it 17?) of Dr. Moneys 'assignments' some 10 years after Money's so-called study ended that showed less than half of those assigned were happy with their role. (If I am able to find the link again, I will post it.) It seems Dr. Money would have had better luck flipping a coin.

[fraulein_Maria]

[QUOTE=JOS;16555]There are probably thousands of people in the world with an IS condition who don't even know about it... no-one bothered to tell them!

How would you gather accurate scientific data on all those people. If you couldn't reveal their condition to them... you also couldn't question them on their satisfaction with their surgeries (or even just their life in general and how they view themselves) to KNOW that was the correct decision?

Therefore, there COULD NOT BE a "scientific" argument to validate a pro-surgery attitude... it must be based on what individuals THINK!!

Has there been documented studies where there have been control groups...
for example:

no forced assignment... then regularly checked to see how they feel
forced assignment with no need... to see how they feel
told they're IS when they're not... see how they feel

sorry I'm being a bit flippant... I'm sure there would be ethics committees up in arms over THAT !!!

but on the flip side ... it must be argued that if there are thousands who are not complaining... then there must be a fairly good success rate from said surgeries and subsequent follow up treatment?

>>> i wish you would go to the CAH forums.... i have been too furious to be as cooly articulate as you... but in answer to your Q. one study has been done on CAH's in europe (give me a day or so to fish it out of my computers bowels) in which what we have been saying all along has been CONFIRMED.

[fraulein_Maria]

[QUOTE=JOS;16555]

Has there been documented studies where there have been control groups...
for example:

>>> from Urotoday.com <<<

Intersex (1) - Part 2


Monday, 17 April 2006
113

LONG-TERM-FOLLOW UP STUDY IN CAH WOMEN; CORRELATION TO SURGERY

Gundela HOLMDAHL, Agneta NORDENSKJOLD*, Louise FRISéN†, Helena FILIPSSON‡, Henrik FALHAMMAR¶, Marja THORéN¶, Per-olov JANSON§ and Kerstin HAGENFELDTƒ

Sahlgrenska University Hospital, Pediatric Surgery, Gothenburg, SWEDEN - * Pediatric Surgery, Dept of Women and Childs Health, Karolinska Institutet, Stockholm, SWEDEN - † Karolinska institutet, Dept of Molecular Medicine, Stockholm, SWEDEN - ‡ Sahlgrenska University Hospital, Endocrinology, Gothenburg, SWEDEN - ¶ Karolinska institutet, Endocrinology, Stockholm, SWEDEN - § Sahlgrenska University Hospital, Gynaecology, Gothenburg, SWEDEN - ƒ Karolinska institutet, Gynaecology, Stocholm, SWEDEN

PURPOSE: The overproduction of androgens in girls with CAH leads to virilisation of the external genitalia. Feminising surgery including clitoriplasty and vaginoplasty is mostly performed during childhood. Many of these children are lost to follow-up for the Paediatric Surgeon and there is a lack of knowledge on the functional aspects of the genitalia during adult life. In a national study (Stockholm-Gothenburg) adult women with CAH have been investigated for the postoperative result.

MATERIAL AND METHODS: Sixty-two women 18-63 years of age have been examined gynaecological. The cosmetic and functional results have been correlated with surgical methods and number of surgical procedures.

RESULTS: 47 women had been operated, more than 50% had been operated at two or more occasions. 11 patients had only vaginoplasty done and in the remaining women it was combined with clitoroplasty. The cosmetic appearance as well as the function of clitoris and vagina are often not optimal. There is also a need from these patients to be able to discuss former surgery, especially since it was common in this group to state that the functional result has influenced their sexual life negatively

CONCLUSIONS: This study emphasize the importance of long term follow up of girls with CAH in order to be able to improve the paediatric surgical care concerning indications, timing and methods

114

GENITAL SENSATION FOLLOWING CHILDHOOD FEMINISING GENITOPLASTY

Naomi CROUCH, Catherine MINTO*, Lih-mei LIAO*, Christopher WOODHOUSE† and Sarah CREIGHTON*

London, UNITED KINGDOM - * Elizabeth Garrett Anderson Hospital, Gynaecology, London, UNITED KINGDOM - † The Middlesex Hospital, Institute of Urology, London, UNITED KINGDOM

PURPOSE: Children born with ambiguous genitalia routinely undergo feminising genitoplasty surgery consisting of clitoral reduction and vaginoplasty in order to achieve a more feminine appearance. This standard practice of childhood surgery remains highly controversial, with little known regarding long-term outcomes. Until now there has been no objective data on sensation to the genital area following such procedures.

MATERIAL AND METHODS: We recruited 28 adult women with 21-OH Congenital Adrenal Hyperplasia (CAH), who had undergone feminising genital surgery in childhood, in order to assess clitoral and vaginal sensation. Seven normal controls without CAH or a history of genital surgery were also recruited. Thermal and vibratory thresholds were assessed using a GenitoSensory Analyzer (GSA Medoc Ltd).

RESULTS: Clitoral testing demonstrated a significant difference between the two groups for threshold sensation to warmth (p = 0.002), cold (p<0.001) and vibration (p=0.037), with the CAH group having poorer sensation. Sensation was measured to the upper vagina, which had not been surgically corrected, in 18 patients and 6 controls, with no significant difference observed between the two groups.

CONCLUSIONS: These results show that clitoral sensation is markedly impaired in women who have undergone feminising surgery in childhood, when compared with normal controls. No difference was observed when sensation was assessed in an area which had not been operated upon suggesting that impaired sensation is associated with previous surgery rather than an independent effect of CAH. Genital sensation is an important contributory factor to female sexual response. These striking findings must be evaluated further in light of the current contentious debate regarding the policy of routine childhood feminising genitoplasty.

[fraulein_Maria]

[QUOTE=fraulein_Maria;16573][QUOTE=JOS;16555]

Has there been documented studies where there have been control groups...
for example:

>>> from Urotoday.com <<<

Intersex (1) - Part 2


Monday, 17 April 2006

>>> see the date? so they KNOW the bastards KNOW

and have known... and have at least suspected for some time given the lag between interest and published study.

[JOS]

Sorry... I was writing this as Maria was posting!!


I am biased - despite not having had anywhere near the sort of surgeries many people with IS conditions have had forced on them, I can still empathise.

I can immediately think of an argument against the last comment I made

but on the flip side ... it must be argued that if there are thousands who are not complaining... then there must be a fairly good success rate from said surgeries and subsequent follow up treatment?

A friend who used to work in local radio once told me that if they received a relatively low percentage of complaints, they ALWAYS assumed that this actually represented a much larger group of people who were simply disinclined to register a formal objection. (I am not certain a survey has been carried out but I DO think this is a commonly held view... hey no LESS valid then eh?)

So receiving a 5-10% complaint rate would actually be indicative of a MUCH larger proportion of people feeling dissatisfaction.

SO I AM DEFINATELY EXTRAPOLATING... but I still think this could be a relevant point, and could suggest that even without a specific study in IS conditions, there would be grounds to question a blanket "surgery is best" attitude.

So what would be the arguments 'for' and 'against' to at least tell patients the true prognosis?

I wouldn't wish the last couple of years of my life on anyone but then again if I hadn't had to move house, maybe I'd be dead from a treatable cancer anyway... then there'd be no complaint !!!

I have tended to be like Kailana and avoid the doctors as much as possible - it took me a week and a half to investigate the hernia even though it was actually really painful
LOL... see told you I'm a numpty!!

[fraulein_Maria]

[QUOTE=JOS;16575]Sorry... I was writing this as Maria was posting!!

>>> sorry, why? :) glad to know that you "get it". <<<


A friend who used to work in local radio once told me that if they received a relatively low percentage of complaints, they ALWAYS assumed that this actually represented a much larger group of people who were simply disinclined to register a formal objection.

>>> actually, politicians pay close attention to phone calls and letters for the same reason (less so e-mail because its so damn easy) <<<

[fraulein_Maria]

[QUOTE=JOS

but on the flip side ... it must be argued that if there are thousands who are not complaining... then there must be a fairly good success rate from said surgeries and subsequent follow up treatment?

>>> how about all those CAH gals silenced by there parents?

i have been kicked off of CAH support groups (they are ALL run by and for parents, NOT cah's themselves) for DARING to SUGGEST that i was unhappy about what they did.

I KNOW i'm not the only one. you should read the piss-poor excuses they come up with....

i have answers for EVERY one.... so they try to trump me by saying....

your not a parent (of a cah gal). what do you know?

of course they NEVER listen to my answer....

of course i'm a parent! my daughter was born virilized, and she has been left as she is.
Your assumption that i am not reveals you prejudice.

and then i'm promptly kicked.

I envy the AIS support groups run BY and FOR those who actually have AIS......

Can you imagine what it would be like? if it was run, by the parents THAT LIED TO YOU?

[JOS]

I can imagine a group of parents all feeling guilt but backing each other up with shaky positive affirmation to make themselves feel better about the decision that actually THEY probably didn't REALLY make... it takes quite strong people to stand up to someone in a position of authority (in this case doctors).

I can especially identify with the heat/vibration testing... the right side of my groin (spreading in a rather large region) is STILL extremely numb and the surrounding area that is slowly becoming less numb doesn't have the same sensation as it did before. That has affected my 'activity' and that isn't even directly in the relevant place so to speak (sorry to be graphic).

I also have another scar from an unrelated operation which extends 15cm down my middle... I "healed too quickly" so the scar is 1.5cm wide. Again, there is no sensitivity to it... and that is only on my tummy... NOT on what is arguably one of the most sensitive body regions (or at least it should be).

Now my surgeries were medically required for immediate health needs so I have no complaints about them (it just makes me feel very ugly... but that's my own issue!!). But if they had been surgeries carried out on my vagina or clitoris...for essentially an individuals personal view on aesthetics (ie the surgeon 'thought' it would look better) well I could basically kiss my sex life good-bye.

I really, really feel so badly and angry for those of you who HAVE had that happen to you.

And what seems so crazy is that rather than accepting that individuals affected by IS conditions might need careful and continual help (be that counselling or surgery in later life) the attitude of ... "it'd be a lot easier to just chop it off now and never mention it again!" seems to have been taken
It is totally beyond comprehension... CRAZY

I mean - the risk of possible teasing (possibly bullying even) during the 12 years that an IS infant is schooled (IF this is handled poorly) seems to be a poor "pro" argument when considered along-side the 50-60 subsequent years of life without being able to enjoy sex (even alone)... not even to mention all the other physical and psychological problems associated with this???

[fraulein_Maria]

[QUOTE=JOS;16582]I can imagine a group of parents all feeling guilt but backing each other up with shaky positive affirmation to make themselves feel better about the decision that actually THEY probably didn't REALLY make... it takes quite strong people to stand up to someone in a position of authority (in this case doctors).

>>> sadly, many (if not most) of these parents DEMAND the doctors do SOMETHING..... <<<

I can especially identify with the heat/vibration testing... the right side of my groin (spreading in a rather large region) is STILL extremely numb and the surrounding area that is slowly becoming less numb doesn't have the same sensation as it did before. That has affected my 'activity' and that isn't even directly in the relevant place so to speak (sorry to be graphic).

>>> its alright... the parents that show up here need to know.

my clitorus was "reduced" by 2/3rds.... supposedly the modern nerve sparing technique.....

for most of my life, i have experienced nothing but shear agony in response to touch... numbness the rest of the time. its only been in the past 2 years that in response to prednisone therapy, what is left shrank beneath what is left of my "hood".....

i don't think i'll be traumatizing a lover anymore by screaming when she insists that's she'll be the first to not cause me pain...... but it would be nice to find out :( <<<<

I also have another scar from an unrelated operation which extends 15cm down my middle... I "healed too quickly" so the scar is 1.5cm wide.

>>> i'm so sorry. They don't repair scars in the UK? <<<

(it just makes me feel very ugly... but that's my own issue!!)

>>> go on! <<<

I really, really feel so badly and angry for those of you who HAVE had that happen to you.

>>> thank you. as i feel bad and angry for the injustice carried out upon AIS'ers.... our fight is not so different... do we not both desire the right to decide for ourselves? <<<


I mean - the risk of possible teasing (possibly bullying even) during the 12 years that an IS infant is schooled (IF this is handled poorly) seems to be a poor "pro" argument

>>> actually, why would a child be teased about what is effectively hidden in ones undies? unless the parents STUPIDLY mention it. i read one parent talk about bathroom "help" and another about diaper changes....

the answer to which is quite simple.... i wasn't sent to school until i was toilet trained... and admonished to never let ANYONE look... not even an adult (good instruction against possible PEDOPHILES)

for my daughter, the answer was even simpler.... she was home schooled.

while that sounds like a burden to some, its actually become quite a common practice. R&T and i talked about before she was even born... i agreed that it was a good idea till she was 7-8 years old, and then to please put her into public (or private) school for her social development.

i was teased ANYWAY (LOL) because i was quite hyper-active... my sis was a four eyes, one bro; a brillo head, another; shrimp.

kids WILL tease... and tease about ANYTHING. so the argument is BULLSHIT. <<<

when considered along-side the 50-60 subsequent years of life without being able to enjoy sex (even alone)...

>>>> ahhhh but now you get to the real reason CAH's are cut....

the doctors tell the parents that it will prevent her from MASTURBATING.

i know they still tell them this. they also tell them it will prevent lesbianism (shhhh.... 40% of all CAH gals are lesbians....but obviously, it doesn't work ;)

It didn't prevent the former either ;) it just meant i had to be a bit creative.

[JOS]

I posted this here because I really found this discussion interesting.
I saw this today and it made me really think... maybe things will change?

http://www.nytimes.com/2005/05/31/science/31conv.html?pagewanted=1

A Conversation With William Reiner
Declaring With Clarity, When Gender Is Ambiguous
Q. How do you know what constitutes gender identity?

A. As part of a research study, I've personally seen and assessed 400 children with major anomalies of the genitals. Of those, approximately 100 might be called "intersex." Our findings have been many and complex. The most important is that about 60 percent of the genetic male children raised as female have retransitioned into males.

We also found that of this group there were some genetically male children, who despite genital anomalies were raised as males, and they continued to declare themselves as male.


So studies are going on... kinda makes me wonder if there have ever been any CAISers who identified as male... I think of myself as a "wonky" female... though I've been trying to think of myself as just a third option... intersexed... in all honesty I am a woman (or else how could I have felt hurt by the thought that if I lived in Texas, I might be thought of as a man)

Q. The idea of sexual reassignment surgery started at Johns Hopkins, where you are a part-time faculty member. Has there been a change in attitude among the staff members there?

A. It's my understanding that the originators of that standard of care may still support that idea and are still on staff. But I've also spoken with the Johns Hopkins Institutions' pediatric urologists, and my sense is they'd be very leery of sex assigning a genetic male to female.


just goes to show that sometimes you really can't teach an old dog new tricks... lets just hope that those "old dogs" haven't clouded the views of the next generation so much that they can't see either!

Q. What conclusions do you draw from your study?

A. That sexual identity is individual, unique and intuitive and that the only person who really knows what it is is the person themselves. If we as physicians or scientists want to know about a person's sexual identity, we have to ask them.


here here :applaudth :ARMS1: :happydanc

[miriam]

Bill Reiner is talking about cloacal exstrophy, not really about other conditions.

Groeten, Miriam

[Kailana]

cloacal exstroph, fact is the article pretty much didn't say much about the specific condition's involved other then to say whether or a XY child had been assigned as girls, and when they found out many reassigned to male. I do find some of Dr. Reiner's comments important especially about only the person affected truely knowing what gender they are and how he see's the medical practice of assigning ambigouos children into a gender as being wrong.

While the article is 3 years old, i do think Jos's observation's about it being important is beneficial to show that not all doctor's treat intersexed ambigous children as a surgical candidate for reassignment. I would add that perhaps it is Dr. Reiner's interest in actively helping people after listening to them that shows he is really trying to help the best way he knows how and that happens to be by listening to his patients. I am sure he made a few mistakes along the way, but at least hes listened and learned from those mistakes, many surgouns and medical professionals have not learned just how much damage they have done to people like us.

Jos thank you for posting the article and link. It is good to know for many of us that maybe there are doctors out there who are really trying to help us, rather then hide us away or ignore us and our concerns.

[miriam]

umm , i didn't see much about
cloacal exstroph, fact is the article pretty much didn't say much about the specifi
Ummm... that's the reason why it's important to read more than just the New York Times because that´s the only way to find out what people do when they are not talking to a journalist of a newspaper. :teach:

http://content.nejm.org/cgi/content/abstract/350/4/333?fyear=1994&tmonth=Apr&author2=gearhart%2C+j&author1=reiner%2C+w&tyear=2004&hits=20&fmonth=Apr&excludeflag=TWEEK_element&sortspec=Score+desc+PUBDATE_SORTDATE+desc&search_tab=authors&andorexacttitleabs=and&searchtitle=Authors&sendit=GO&andorexactfulltext=and&searchid=1081207688152_68&FIRSTINDEX=0&journalcode=nejm

http://www.isna.org/node/564

Groeten, ummmm, Miriam :grin:

[Kailana]

sorry but i think you are making a mistake in assuming the article Jos posted the link too, is in fact the same article you have posted links too. The ones you provided about Cloacal Exstrophy is over a year before the one Jos posted. The subject matter in Jos article does not refer to the subject matter you provided.

Making it simple Jos article is explaining/talking about the Gender assignment of the 100(400) of the patients he has seen that would be classified as intersexed. Unless i read that wrong, the article is just explain's how he got into the practice of treating intersexed patients, and his understanding of how the treatment standards used on intersexed, ambigous XY boys, assigned as girls did not fit with a large percentage of the patients own self identification of their gender.

I happen to like the article as it does or seems to do a really good job showing how he understands that the patients gender Identity is the patients and surgery to assign a gender does not always work.

He may have taken some of his patients thoughts who may not be considered intersexed, probably even from the study you mentioned, but overall, i would say that the article in the New York Times was not about Cloacal Exxstrophy, and was in fact about gender identity of surgically assigned intersexed, ambigous XY affected patients and how those patients Gender Identity did not coincide with the Gender surgically assigned.

[The Female Eunuch]

Miriam wrote:Bill Reiner is talking about cloacal exstrophy, not really about other conditions.

the first case mentioned in the article did not fit the characteristics of cloacal exstrophy. so, while the cases mentioned in the article may include some of cloacal exstrophy, it's clearly not specific to that condition.

Caroline

[fraulein_Maria]

[QUOTE=The Female Eunuch;18555]Miriam wrote:

the first case mentioned in the article did not fit the characteristics of cloacal exstrophy. so, while the cases mentioned in the article may include some of cloacal exstrophy, it's clearly not specific to that condition.

>>> the whole enchilada...

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1421518

interpretation of medical jargon available upon request. :) <<<

[Kailana]

That does help clear up some of the issue a little over the relavence of the original article.

[JOS]

for posting those other papers... bit more scientific than a newspaper :embaresse

They all make really interesting reading, I think, on the topic of "how do they know"... and all seem to point to the fact that some people are listening

from Miriam's linked paper
This followed from John Money’s work with intersexed children, and his conviction that infants with a very short or ambiguous penis could be reassigned female and develop a normal female gender identity. This notion, which served as the cornerstone for neonatal sex reassignment in a variety of intersex conditions, has increasingly been questioned in the past decade. Reiner and Gearhart’s findings further undermine the rationale for sex-reassignment in the case of cloacal exstrophy.

and from Maria
feminizing surgery in moderately to severely virilized children may present unacceptable long-term clinical risks. It should be approached with great caution and only after parents and clinicians have carefully reviewed and applied all relevant and up-to-date research data.

but the thing I found really interesting is that this research is partly funded by Johns Hopkins Children's Center...

I guess why I think it's interesting to see things like that in newspapers, is because that is where MOST of the general public (the "not directly affected") will get their information about us.
i.e. that's the sort of source my parents/friends might base their questions to me from.... kinda helps to know what biases they might have already :wink:

But I appreciate that newspapers alone aren't the most reliable sources for scientific study :-D (just have to keep reminding myself too LOL)

Anyway, thanks Kailana and Caroline for talking about this too... it makes for interesting times ahead doesn't it?

Did you see the bit about sex in animals too... a scientist, who now lives as a woman, has written a book about the occurrence/importance of LGBT and IS in other animal societies.

Dr. Joan Roughgarden, ''Evolution's Rainbow''

http://query.nytimes.com/gst/fullpage.html?res=9C01EED71E3FF934A25753C1A9669C8B63

In fish known as wrasses, for example, some large females change into males later in life and have harems of females, while small males remain male for life, mating with females under the large males' control. Some females remain female for life...

...In Dr. Roughgarden's framework, rather than designate any type as the normal or alternative, scientists would recognize the fundamental difference between these three differently sexed, shaped, sized and behaving fish and designate them as different genders.

Dr. Roughgarden said scientists had also been shockingly blind to same-sex mating.


It brought me back to the book I mentioned before, by Elaine Morgan, who was pointing out flaws in evolutionary theory due to a very male-centered bias in the thought process.
She argued that women were usually just added in at the last minute in a section about babies... but that making up more than 50% of the population, probably meant their survival needs had to be met equally
(I'm paraphrasing... it's a while since I read it.... about mmm 15-18 yrs!! LOL).

:beer:

[Dianne]

.... women were usually just added in at the last minute in a section about babies... but that making up more than 50% of the population, probably meant their survival needs had to be met equally

Actually, considering that one male can "service" a large number of females but females must live long enough to mature and produce more than one offspring, males, in the grand scheme of things, are quite expendable! :shock:

[Andre]

Said the spider to the fly.

[JOS]

more like
said the female spider to her "ex" boyfriend

[Kailana]

about the parents that didn't acknowledge their childrens beliefs in what they were and those who didn't respond at all to questions about their own gender identities?

I am curious because I actually believe my parents would only report my identity as Male regardless of how many times I have told them I am not, nor have ever been a male.

My apologies to all, especially to parents who are having a really hard time understanding their children and those who haven't found their true-selves yet.


To help clarify my question, I have no memories of ever being treated or going to John Hopkins, however, I am the one who answered the telephone and spoke with a women from John Hopkins when she informed my parents that the Sex Unknown Documentary, ie David Reimer's documentary was going to be aired. I happened to have been very confused when she mentioned my son was going to be shown. If it helps any I will remind people that I went by Rudy Andrew Alaniz and she had asked to speak to Mr. Rudy Alaniz Jr which is technically my father, I was not a Jr by the way, and often accidently accepted calls that were intended for my father. She also was confused when i mentioned I had no children and have never been to John Hopkins; which then caused her to ask if I was a veteran, which i was, and then asked about my wife, Maria, and that happens to be my mom. I may sound battier then hell at the moment, but I also do know that I was 5 months old when the Laparoscopic exam was performed to see what was inside. <---Just don't have the complete report to explain what was found inside, and is one of the few places in my medical records i do have where the gender pronouns says she and her, but again doesn't even say which hospital the Laparoscopic exam was performed at either. There are many holes in my records that only cause more questions, rather then help solving them.

There are many reasons why I believe the 5 month old CAH girl shown with almost normal appearing male genitalia happens to be me. 1) she is the only hispanic child shown on that documentary. 2. She looks like me or I looked like her at 5 months of age. 3. Her build matches mine. 4. Her pinky toes fit with Turner's stigmata, ie outturned. 5. Torso also fits with Turner's stigmata. 6. Her neck fits both Turners and CAH; meaning she has none if that makes any sense. 7. And the most important thing is that she was raised male regardless of the doctors at the time acknowledge her to be genetically XX, having ovaries and uterus internally and possibly being able to have children but was raised male. <---that is also one more issue I have with Karyotyping blood and not doing tissue biopsies as well, ie if tissue was karyotyped in march of 1971 (me at 5 months of age) and found to be XX genetically female at the time with almost normal male genitalia but raiesed male, my with issues over my XY/XO dx in 93, dermatology exam from 92, current last 2 blood karyotyping last two years, I seriously believe that there is more to me that is not being explained or mentioned by doctors and my family.Kailana S. Alaniz

My sincerest apologies for including all that in this post, It sort of goes with Miriams question a week ago to me, about having a medical study or literature published about me. Meaning, I do believe I am published somewhere, possibly John Hopkins, its very likely. I have no way of actually confirming that I am published anywhere as there is no openness when it comes to my medical history, surgeries, and treatment. Sorry again, I also have some issues with my own memories ie Childrens hospital in Spokane Washington and the clinic in Montana that i remember going to that frauline_maria thought I was describing the Mayo Clinic in Minnesota? a 8 sided stretched out octagon shaped white building 1 level/story that was all by itself, no other buildings or structures around it that I can remember, and that clinic was a long Day trip for me, traveling from Walla Walla by car, so there is no way it was the Mayo Clinic in Minnesota, but would anyone know of a branch campus/branch clinic in Montana with similar design structure. Sorry again, but i can remember hospital trips at 4-5 years of age easily enough, I do know i have been in a few hospitals check ups, that I stopped going to when I started kindergarten.

My apologies again but some of those comments in those articles about the patients(diagnosis) and the parents(refusal to acknowledge the childs gender identity) has me bothered.

[fraulein_Maria]

[QUOTE=JOS;18560]

>>> de nada, your welcome :) <<<

Did you see the bit about sex in animals too... a scientist, who now lives as a woman, has written a book about the occurrence/importance of LGBT and IS in other animal societies.

>>> i'm partial to Bonobo chimps ;) <<<

[fraulein_Maria]

[QUOTE=JOS;18560]for posting those other papers... bit more scientific than a newspaper :embaresse

>>> found this, in of all places, the turner's mosaic site (46 XY/XO )

> Subject: Reduction surgery on CAH's and AIS'ers



> The effect of clitoral surgery on sexual outcome in
> individuals who have intersex conditions with
> ambiguous genitalia: a cross-sectional study
> The Lancet v.361, n. 9365, 12apr03
> Catherine L Minto, Lih-Mei Liao, Christopher R J Woodhouse,
> Phillip G Ransley, Sarah M Creighton
>
> Elizabeth Garrett Anderson Hospital, Department of
> Obstetrics and Gynaecology, University College London
> Hospitals NHS Trust, London, UK (C L Minto MB, K L-M Liao
> AFBPsS, S M Creighton FRCOG); Institute of Urology,
> Middlesex Hospital, University College London Hospitals NHS
> Trust, London (C R J Woodhouse FRCS); and Great Ormond
> Street Hospital for Children, London (P G Ransley FRCS)
>
> Correspondence to: Dr Sarah M Creighton, Elizabeth Garrett
> Anderson Hospital, Department of Obstetrics and Gynaecology,
> University College London Hospitals NHS Trust, Huntley
> Street, London WC1E 6DH, UK (e-mail:
> sarah.creighton@<hidden>)
>
> Summary
>
> Background
>
> The effects on sexual function of surgical removal of parts
> of the clitoris are unknown. For infants with intersex
> conditions and ambiguous genitalia being raised female, this
> surgery is often undertaken in early childhood. Our aim was
> to assess the effects of surgery on sexual outcome in this
> population.
>
> Method
>
> We did a cross-sectional study to which we recruited 39
> adults who had intersex conditions with ambiguous genitalia
> who were living as female from clinical (n=15) and
> peer-support (n=24) settings. We obtained data by use of a
> postal questionnaire, incorporating a validated sexual
> function assessment inventory. We also obtained hospital
> notes of 36 respondents who did not want to remain
> anonymous, and did genital examinations of 19 women. We
> assessed sexual problems in relation to surgical history and
> compared the results for our population to those of a
> healthy control group.
>
> Findings
>
> Of the 39 individuals enrolled, 28 had been sexually active
> and all had sexual difficulties. The 18 women who had
> undergone clitoral surgery had higher rates of
> non-sensuality (78%) and of inability to achieve orgasm
> (39%) than did the ten who had not had surgery (20%
> [p=0·002] and 0% [p=0·03], respectively).
>
> Interpretation
>
> Sexual function could be compromised by clitoral surgery.
> Debate on the ethics of the use of this surgery in children
> should be promoted and further multicentre research is
> needed to ensure representative samples and comprehensive
> outcome assessment. Meanwhile, parents and patients who
> consent to clitoral surgery should be fully informed of the
> potential risks to sexual function.
>
> Lancet 2003; 361: 1252-57
>
> Introduction
>
> The prevalence of intersex conditions is estimated at one
> in 2000 livebirths.1 Many affected individuals present with
> ambiguous genitalia in the neonatal period or in childhood.
> Clitoral surgery for intersex conditions was first promoted
> in the late 1930s by Hugh Hampton Young, a surgeon at Johns
> Hopkins University, USA.2 Later, psychologists at Johns
> Hopkins developed an intersex management protocol based on
> the notion that all infants are gender-neutral at birth, and
> that if unambiguous sex of rearing and unambiguous genitalia
> were made congruent in the early years, the desired adult
> gender identity and partner orientation would ensue.3-5 The
> theory of psychosexual neutrality at birth has now been
> replaced by a model of complex interaction between prenatal
> and postnatal factors that lead to the development of gender
> and, later, sexual identity.6-9 For parents, the realisation
> that their child has an intersex condition invariably
> results in emotional
> distress. In the midst of confusion, they have to decide
> on their child's sex of rearing with the help of
> health-care providers. In the USA and most western European
> societies, a female sex of rearing is the most likely
> clinical recommendation to parents.10 Once a decision of
> female rearing is made, surgery is often undertaken to
> remove any incongruent gonadal tissue and to feminise the
> appearance of the genitalia--usually through the removal of
> parts of the clitoris or phallus to reduce its size.11 This
> surgery is done because it is thought to result in better
> psychological outcomes for the child than leaving the
> genitalia unaltered.12-15
>
> The practice of feminising genitoplasty has created
> considerable controversy, and is associated with many
> ethical dilemas.10 First, there is no evidence that
> feminising genital surgery leads to better psychosocial
> outcomes than leaving the genitalia unaltered.8 Second,
> there is no guarantee that adult gender identity will
> develop as assigned.7,9 Finally, future sexual function
> might be altered by removal of clitoral or phallic tissue.
> Until the late 1970s or early 1980s, clitorectomy--the
> removal of both the corpora and the glans--was the usual
> procedure. With greater acknowledgment of the vital role of
> the clitoris in female sexual function, clitorectomy is no
> longer undertaken in the UK. Clitoroplasty, which involves
> dissection of the clitoral skin and removal of most of the
> paired clitoral corpora with preservation of the glans and
> dorsal neurovascular bundle, has become the usual
> procedure.11
>
> Cosmetic alteration of the clitoris is often assumed to
> have no great long-term effect on sexual function.12-14
> Previous studies15-18 have reported paediatric surgical
> follow up of various cohorts of intersex patients who had
> undergone genital surgery in infancy, but all had small
> numbers and most did not assess sexual function in detail.
> The results of two psychological studies,19,20 which used
> standardised assessment of adult sexual function after
> childhood clitoral surgery, suggest that sexual difficulties
> are more common for adults with intersex conditions than for
> the general population, with high rates of anorgasmia in
> intersex women.
>
> Our aim was assess the effects of feminising intersex
> surgery on adult sexual function in individuals with
> ambiguous genitalia.
>
> Methods
>
> Participants
>
> Between Aug 1, 1999, and Jan 1, 2001, we did a
> cross-sectional study to which we recruited individuals aged
> 18 years or older with an intersex condition incorporating
> ambiguous genitalia and who were living as female, from the
> University College London Hospital adult intersex clinic
> (http://www.uclh.org/ services/reprodev/) and from two UK
> intersex peer-support groups--the Androgen Insensitivity
> Syndrome Support Group (AISSG; http://www.medhelp.org/www/
> ais/) and the Adrenal Hyperplasia Network (AHN; http://
> www.ahn.org.uk).
>
> The study was approved by the Joint University College
> London/University College London Hospital committee on the
> ethics of human research.
>
> Protocol
>
> We obtained data by sending potential participants a
> questionnaire, incorporating a validated sexual function
> inventory; by examining hospital notes; and by genital
> examination.
>
> We posted a study pack to all individuals who fulfilled the
> study criteria and who had been seen for follow-up at the
> University College London Hospital clinic within the past 2
> years, and to all members of AHN and AISSG. The pack
> contained an information sheet, a consent form requesting
> consent for hospital-notes retrieval and genital
> examination, a self-complete questionnaire, an invitation to
> attend a genital assessment, and a postage-paid reply
> envelope. We sent reminder study packs to all clinic
> patients who had not responded within 3 months. We also
> enclosed packs with AISSG newsletter mailings and
> distributed them at three AISSG meetings and one AHN
> meeting.
>
> The self-administered questionnaire could be completed
> anonymously or with identifiable details. The questionnaire
> has been previously used in a study on sexual function
> outcomes in complete androgen insensitivity syndrome.21 We
> assessed sexual function with the Golombok-Rust inventory of
> sexual satisfaction (GRISS) for women.22 The GRISS is a
> multidimensional questionnaire that has been validated in
> the UK and allows a comparison of the sexual functioning of
> this study population with a UK female control population.
> The GRISS comprises 28 questions each with five possible
> answers, ranging from never to always. These 28 items are
> scored and converted to provide eight discrete scores, one
> for overall sexual function and seven for each specific area
> of sexual function--ie, frequency of intercourse,
> communication, degree of satisfaction, avoidance,
> sensuality, vaginal penetration, and orgasm.22-24 The final
> scores on each of the GRISS subscales range from 1
> to 9, and have been validated within the female UK
> population; scores of 1-4 indicate normal sexual functioning
> and scores of 5-9 indicate increasing degrees of sexual
> dysfunction. We entered all correctly completed
> questionnaires into the study. CLM, who was unaware of the
> diagnosis or the past history of participants, scored the
> GRISS questionnaires. The control group for the sexual
> function data were the individuals, drawn from the UK female
> population, used in devising, standardising, and validating
> the GRISS sexual function questionnaire.23,24
>
> For respondents who did not want to remain anonymous, we
> requested consent to retrieve medical records (paediatric
> and adult) to confirm diagnostic and treatment information,
> and contacted all the hospitals previously attended for a
> copy of the patient's medical file. If case notes were
> unavailable or data were missing, we contacted the family
> practitioner to request copies of all correspondence from
> the hospital. Data were subsequently extracted on: mode of
> presentation, results of all investigations, results of
> clinical examination, interventions, surgery, and
> histopathological results. We constructed a clinical history
> for each respondent, which we used to assign an accurate
> intersex diagnosis, a complete surgical history, and a
> Prader score25 to define genital appearance at presentation.
>
> We sent all respondents who had indicated an interest in
> attending the research clinic for clinical examination a
> more detailed information sheet and choice of clinic
> appointment times. At the examination, data were obtained on
> the appearance and dimensions of the genitalia, by
> previously described methods.21 We excluded participants
> from the study if they had not had genital ambiguity, if the
> constructed clinical history led to doubt over the diagnosis
> of an intersex condition, or if they had coexisting
> conditions that could affect sexual function, such as major
> psychiatric or neurological impairment.
>
> Statistical analysis
>
> We did statistical analyses with SSPS (version 11.0.0),
> with Pearson's 2 statistic, Fisher's exact test, and
> Kendall's rank correlation test, as appropriate. We
> judged a p value of <0·05 to be significant.
>
> Role of the funding source
>
> The sponsors had no role in the study design, data
> collection, data analysis, data interpretation, or writing
> of the report.
>
> Results
>
> 81 potential respondents received a study pack (21
> patients, 39 AHN members, and 21 AISSG members). 44 (54%) of
> 81 questionnaires were returned (15 from clinic patients, 14
> from members of AISSG, and 15 from members of AHN). We
> excluded two because of inadequate completion. Of the
> remaining 42 questionnaires, three respondents had chosen to
> remain anonymous (two from AHN, one from AISSG). Of the 39
> participants who consented to retrieval of hospital records,
> a clinical history was constructed. However, in two cases
> the exact technique of childhood surgery remained unknown.
> Three further respondents were excluded after construction
> of the clinical history because of an additional diagnosis
> of multiple sclerosis (one) and doubt over the diagnosis of
> an intersex condition (two). Table 1 shows the baseline
> characteristics of the final sample (n=39). Of these, 19
> (49%) attended for genital examination (table 2).
>
>
>
--------------------------------------------------------------------------------
>
> Table 1: Baseline characteristics
>
>
> Demographic details AHN (n=14) AISSG (n=10) Clinic
> (n=15) Total (n=39)
> Median (range) age (years)
> 30(21-65) 34(18-70) 29(19-60) 31(18-70)
> Ethnic origin
> White 13(93%) 10(100%) 14(93%) 37(95%)
> Other 0 0 1(7%) 1(2·5%)
> Unknown 1(7%) 0 0 1(2·5%)
> Diagnosis
> Congenital adrenal hyperplasia 14(100%) 0
> 8(53%) 22(56%)
> Partial androgen insensitivity syndrome 0 7(70%)
> 2(13%) 9(23%)
> Mixed gonadal dysgenesis 0 3(30%) 0 3(8%)
> 17keto-steroid-reductase deficiency 0 0 2(13%)
> 2(5%)
> 5-reductase deficiency 0 0 2(13%) 2(5%)
> True hermaphrodite 0 0 1(7%) 1(3%)
> Clitoral surgery group (n=28; number having [%])
> vaginal surgery/total
> Ambiguous genitalia at birth and early 6/10(60%) 0
> 6/7(86%) 12/17(71%)
> childhood clitoral surgery (age <5 years)
> Ambiguous genitalia at birth and late 2/2(100%)
> 1/1(100%) 1/2(50%) 4/5(80%)
> childhood clitoral surgery (age 5-14 years)
> Ambiguous genitalia at birth, no childhood
> surgery, 1/1(100%) 0/1 0 1/2(50%)
> and clitoral surgery after puberty (age >14 years)
> Ambiguous genitalia developed around puberty 0 1/3(33%)
> 0/1 1/4(25%)
> and clitoral surgery
> No clitoral surgery group (n=11; number/total [%])
> Ambiguous genitalia at birth or puberty and never 0/1
> 1/5(20%) 2/5(40%) 3/11(27%)
> undergoing clitoral surgery
>
> Data are number (%) unless otherwise indicated.
>
>
--------------------------------------------------------------------------------
>
> Table 2: Results of genital examinations
>
> Number of Clitoral Median (range)
> participants size vaginal length (cm)
> Clitoral surgery group (n=13)
> Ambiguous genitalia at birth and early
> 9·5(1·5-13·0)
> childhood clitoral surgery (age <5 years)
> Clitorectomy 6 Absent (n=1)
> Small (n=2)*
> Normal (n=2)*
> Large (n=1)*
> Reduction 1 Very large
> Recession 1 Small
> Ambiguous genitalia at birth and late childhood
> 8·5â€
> clitoral surgery (age 5-14 years)
> Unknown 1 Large
> Ambiguous genitalia at birth, no childhood
> 5·25(0-10·5)
> surgery, and clitoral surgery after
> puberty (age >14 years old)
> Clitorectomy 2 Absent (n=2)
> Ambiguous genitalia developed around
> puberty and clitoral surgery
> Clitorectomy 1 Absent 2·5â€
> Reduction 1 Large 2·0â€
> No clitoral surgery group (n=6)
> Ambiguous genitalia at birth and never
> undergoing clitoral surgery 6 Normal (n=1)
> 10·5(1·5-12·0)
> Large (n=3)
> Very large (n=2)
>
> *No glans or hood seen, but a subcutaneous mass in the
> place of the clitoris was present. †Actual size.
>
>
--------------------------------------------------------------------------------
>
> The range of diagnoses in our study group covered most
> intersex conditions that present in childhood with ambiguous
> genitalia, with the most common being congenital adrenal
> hyperplasia and partial androgen insensitivity syndrome
> (figure 1). Most participants (27 [69%] of 39) had presented
> at birth or before age 5 years with ambiguous genitalia
> (mean Prader score 3·29, SD 0·9, range 2-5). Two
> individuals with congenital adrenal hyperplasia presented at
> age 7 years with ambiguous genitalia and pubic hair growth
> (Prader score 2). Of the remaining ten who did not present
> at birth or in early childhood, four presented with primary
> amenorrhoea and ambiguous genitalia were noted, four
> presented with ambiguous genitalia alone, one had vaginal
> hypoplasia, and one who was raised as male did not undergo
> pubertal virilisation in addition to gender dysphoria. All
> participants were aware of their diagnosis.
>
> Figure 1: Type of intersex condition diagnosed
>
>
>
> Three individuals have not accepted the gender they were
> assigned in childhood. Of the two participants raised as
> males, the first, with partial androgen insensitivity
> syndrome, was initially assigned female at birth but
> reassigned to a male sex of rearing at around age 3 weeks.
> He developed a feminine physique despite some
> masculinisation and, although still legally male, underwent
> surgical genital reassignment at age 30 years and lives as a
> woman. The second individual raised as a male has mixed
> gonadal dysgenesis and now lives as a female--she underwent
> surgical reassignment to female at age 23 years. The only
> participant wishing to live as a male is a 60-year old with
> 5--reductase deficiency who was raised female and married in
> her early twenties and underwent vaginoplasty without being
> told of her intersex condition. However, her sexual
> orientation and gender identity developed predominantly as a
> male, and in her late fifties she finally decided to
> seek surgery to reassign as a male. This individual is
> legally being reassigned male and, since a gonadectomy was
> never done, there is the possibility of fertility with his
> partner.
>
> Most participants had undergone clitoral surgery (table 1),
> and the median age of first clitoral surgery was 3·5 years
> (range 0·1-42; figure 2). The 11 individuals who did not
> have surgery had either been born with ambiguous genitalia
> (four) or ambiguous genitalia were noted at presentation
> (seven; mean age 14·6 years [range 7-20, SD 4·16]). There
> was no difference in degree of genital masculinisation at
> presentation between the two groups (mean Prader scores for
> the clitoral surgery and no clitoral surgery groups were
> 3·2 and 2·7, respectively). The two groups were equally
> distributed between clinic patients and support group
> recruits. All of the individuals who had undergone
> gonadectomy were taking hormone replacement therapy, apart
> from one female aged 56 years with partial androgen
> insensitivity syndrome. Those who had never undergone
> clitoral surgery were older than those who had undergone
> clitoral surgery (mean age 40·9 vs 30·7 years),
> possibly reflecting historical trends--genital surgery was
> less prevalent in the UK before the 1970s than after.
>
> Figure 2: Age at clitoral surgery
>
>
>
> Surgical technique indicated historical trends, with most
> individuals seen before 1979 undergoing clitorectomy and
> most of those operated on after 1980 undergoing
> nerve-sparing clitoral reduction with corporal excision.
> However, one individual had undergone clitorectomy in 1985
> and another had had clitoral reduction in 1975. Overall
> surgical technique remained unknown in two patients (7%),
> clitorectomy had been done in 18 (64%), clitoral reduction
> in seven (25%), and one individual (4%) had undergone
> clitoral recession. Four participants (14%), all with
> congenital adrenal hyperplasia, had undergone more than one
> clitoral operation because of regrowth of the corpora. The
> first of these individuals had had a clitorectomy at age 1
> month, and underwent a second reduction procedure at age 12
> years. The second underwent clitoral reduction at 1·1
> years, vaginoplasty at 10·1 years, and repeated clitoral
> reduction and removal of hair from the clitoral hood at
> 15·1 years. The other two patients underwent three
> clitoral reductions at ages 4, 14·5, 16, and 17 years,
> respectively. In the group that had undergone clitoral
> surgery, 18 (64%) of 28 had also had vaginal surgery (table
> 1) at a mean age of 9·2 years (range 0·1-28, SD 8·7). A
> second vaginal surgical procedure had to be done in seven
> individuals (39%) and a third in two of these (11%). Three
> of the 11 participants who had not undergone clitoral
> surgery had undergone vaginal surgery (vaginoplasty type:
> amnion, Williams and colovaginoplasty) aged between 21 years
> and 23 years.
>
> Sexual function data were available for only 28
> participants (table 3), because 11 (28%) had never been
> sexually active. A higher proportion of individuals in the
> clitoral surgery group than in the no clitoral surgery group
> had not been sexually active (36 vs 9%), although this
> difference was not significant (p=0·13). The proportion of
> never sexually active individuals recruited from support
> groups or the clinic did not differ (29 vs 27%, p=1·00).
> Additionally, we noted no difference for history of vaginal
> surgery (44% of individuals who had had vaginal surgery and
> 58% of those who had not had not been sexually active,
> p=0·42). Three participants in the clitoral surgery group
> and one in the non-clitoral surgery group did not answer the
> questions relating to vaginal penetration: one participant
> had no vagina and the other three are currently in
> homosexual relationships that do not involve penetrative
> sex.
>
>
>
--------------------------------------------------------------------------------
>
> Table 3: Sexual function of 28 participants, according to
> GRISS
>
> Subscale scores (%)
> Clitoral surgery group (n=18) No clitoral surgery
> group (n=10) .
> Severe Severe
> Normal* Difficulties†difficulties‡ Normal*
> Difficulties†difficulties‡
> Frequency 28% 72% 33% 30% 70% 30%
> Communication 28% 72% 17% 20% 80% 20%
> Satisfaction 61% 39% 0% 80% 20% 0%
> Avoidance 28% 72% 22% 20% 80% 10%
> Sensuality 22% 78% 22% 80% 20% 10%
> Vaginal penetration§ 33% 67% 33% 33% 67% 22%
> Orgasm 39% 61% 28% 60% 40% 0%
>
> *Score of 1-4. †Score of 5-9. ‡Score of 8 or 9. §Four
> individuals chose not to answer
> the questions on vaginal penetration.
>
>
--------------------------------------------------------------------------------
>
> Every one of the 28 sexually active individuals,
> irrespective of whether or not they had had clitoral
> surgery, had subscale scores indicating a sexual problem in
> at least one of the seven areas of sexual function (table
> 3). The mean number of areas of difficulty was higher for
> the clitoral surgery group than the no clitoral surgery
> group. Difficulties with sensuality were significantly
> higher in the clitoral surgery group than in the no surgery
> group (p=0·002), and were associated with communication
> difficulties (r=0·54, p=0·01) and avoidance (r=0·42,
> p=0·02). Both groups had overall difficulties with orgasm
> (figure 3). A complete inability to orgasm is rare in the
> healthy population, with only 7% of controls responding to
> question 14 of the GRISS that they always find it impossible
> to orgasm.23 However, seven (39%) of 18 of the sample who
> had had clitoral surgery answered that they always found it
> impossible to orgasm compared with none of those
> who had not had clitoral surgery (p=0·03).
>
> Figure 3: Orgasm GRISS subscale scores by group
>
>
>
> Type of clitoral surgery
> Clitorectomy
> Clitoral reduction
> Clitoral recession
> Unknown type of clitoral surgery
> No clitoral surgery
>
> A Clitoral surgery group (n=18)
> B No clitoral surgery group (n=10)
> * UK Norm = Below this line is the normal range of UK
> female scores
>
>
>
>
>
>
> On comparison of sexual function results for individuals
> recruited from the support group with those recruited from
> the clinic, there was a slightly higher rate of difficulties
> in the clinical sample. However, this difference was not
> significant--eg, non-sensuality 47% compared with 73%
> (p=0·25). Analysis of sexual function results also showed
> no significant relations with intersex diagnosis.
>
> Discussion
>
> Our results indicate that individuals who have had clitoral
> surgery are more likely than those who have not to report a
> complete failure to achieve orgasm and higher rates of
> non-sensuality--in particular, a lack of enjoyment in being
> caressed and in caressing their partner's body. However,
> we are not able to rule out other factors that might account
> for differences in sexual difficulties between the two
> groups, since we did not collect data on mood, body
> satisfaction, sexual knowledge, and confidence, quality of
> life, or subjective assessment of clitoral surgeries. All
> individuals in this study, whether having undergone clitoral
> surgery or not, had difficulties with various features of
> sexual function. Two participants who attended for genital
> examination mentioned that they had answered the GRISS
> questions on orgasm, but that after conversations with
> female friends they were not sure if they had actually had
> an orgasm. Even after assuming that
> non-respondents had had no sexual difficulties whatsoever,
> our results indicated that half of those presenting with
> ambiguous genitalia report having problems in some area of
> sexual functioning. Clinicians involved in adult care
> should, therefore, assess their patients for potential
> sexual problems and provide health-care services
> accordingly.
>
> To claim that clitoral surgery has no long-term effect on
> sexual function is wrong. However, ours was a fairly small
> cross-sectional study, and we do not know how representative
> it is; thus, on the basis of our data we cannot recommend a
> complete halt to clitoral surgery. Some clinicians have
> suggested that individuals who attend support groups are
> particularly dissatisfied with their medical care and,
> therefore, that a sample derived from a support group might
> be seen as skewed in favour of people who have worse
> outcomes.26 Other clinicians intimate that the opposite is
> true, noting that individuals who attend support groups are
> better informed, more self-sufficient, and more likely to
> have found the medical care they require than those who do
> not. We noted a slightly higher rate of sexual difficulties
> in patients recruited from clinics than from support groups,
> although there was no significant difference between them
> for rate of sexual difficulties or
> whether or not individuals had ever been sexually active.
>
> Because of the lack of an evidence base, some clinicians
> are uneasy about clitoral reduction surgery, albeit nerve
> sparing, especially for infants. New research has
> re-examined the anatomical structure and nerve supply of the
> clitoris, which is a triplanar erectile tissue complex made
> up of a root (bilateral crura), body (bilateral corpora
> cavernosa), and the glans covered by the prepuce or clitoral
> hood (formed by the anterior fusion of the labia minora).27
> The tip of the glans is visible but the rest of this complex
> organ is hidden, surrounding three quarters of the urethra
> and extending into the vestibule of the vagina.27 The
> importance of the clitoris in female sexual function has
> been known since ancient times, and scientific information
> to that effect has been available for decades. What remains
> unclear is the contribution of different parts of the
> clitoral complex to sexual sensitivity, arousal, and orgasm.
> Clitoral reduction surgery could damage
> nerves that pass to the glans clitoris,11 and how far
> damaged nerves might regrow and to what degree the sensory
> innervation of the clitoral hood and glans clitoris are
> important in sexual function is unknown. The most prevalent
> technique of clitoral reduction also removes the paired
> clitoral corpora that fill with blood during arousal and
> lead to clitoral erection. To what extent this part of the
> clitoral complex is involved in orgasm, and what
> implications corporal removal might have on sexual function,
> is unknown.
>
> Parents and clinicians often consider the alteration of
> ambiguous genitalia to achieve a more normative female
> appearance a logical and obvious course of action. But the
> outcomes of these procedures have not been systematically
> examined or compared with non-intervention. Feminising
> genitoplasty remains the standard management for intersex
> infants because of clinicians' beliefs that it improves
> psychological outcomes. The alternative of leaving the
> genitalia unaltered might predispose the child to various
> difficulties, including difficulties with body image and
> gender development, bullying, and embarrassing erections.
> Counter arguments are that surgery can be done later in
> childhood if difficulties do arise--when the child is older
> and can contribute to the discussion--and that with time the
> genital appearance frequently changes, with the obviously
> ambiguous neonatal genitalia often changing spontaneously to
> a more feminine appearance through the phallus
> becoming proportionately smaller in relation to the
> growing labia and fat deposition, and also because of
> treatment to reduce androgen production.
>
> Our findings suggest that adult sexual function could be
> compromised by feminising clitoral surgery. Infants and
> young children are powerless to oppose any procedures, so
> genital surgery for them is not just a medical issue but
> also a moral one. Debate over ethics with interested parties
> should be encouraged and clinicians should advance the
> debate and help individuals and families to make the best
> possible decisions by producing reliable information. Many
> surgeons will undoubtedly feel justified in doubting the
> findings of this study, and will fall back on the
> traditional response of claiming that current techniques are
> more advanced than the surgical procedures we assessed.28
> Although surgery has advanced in many ways, this is not a
> valid reason for complacency. In this study surgery was done
> 8-40 years ago, and most individuals had undergone
> clitorectomy. Of the three sexually active participants who
> had undergone the newer technique of nerve-sparing
> clitoral reduction, however, two had the worst possible
> score for orgasm difficulties (orgasm subscale score of 9).
> Detailed, multicentre studies that explore the potentially
> varied effect of timing and technique of clitoral surgery on
> psychological, sexual, and quality of life outcomes are
> needed. Until such data are available, individuals
> consenting to cosmetic clitoral surgery should be counselled
> on the risks of the procedure. Contributors
>
> S Creighton and C Minto conceived and devised the study,
> agreed overall study design, and undertook genital
> examinations. C Minto collected data, analysed, and
> interpretated data, and wrote the report. S Creighton and L
> Liao contributed to discussion and interpretation of the
> data and to writing the paper. C Woodhouse, L Liao, and P
> Ransley were involved in the conception and design of the
> study and contributed to the final version of the paper.
>
> Conflict of interest statement
>
> None declared.
>
> Acknowledgments
>
> We thank the Adrenal Hyperplasia Network and the UK
> Androgen Insensitivity Syndrome Support Group for their help
> with this study, and all the participants. CLM is funded by
> a grant from trustees of the Elizabeth Garrett Anderson
> Hospital.
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http://www.thelancet.com/journal/vol361/iss9365/full/llan.361.9365.original_rese\
arch.25217.1
> 12apr03
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>

[Kailana]

several follow-up studies are finally being performed. Do you wonder what will happen in the future? Do you think we will see the end of infantile surgeries in our own lifetime?

oh and thanks again for hunting this information down Maria, i know it does take tons of time looking for relavent and accurate data.

[fraulein_Maria]

Medical decision-making and the child with a DSD

One thing we can learn from the history of DSD treatment is that
"common-sense" assumptions don't always apply in these unique cases.
Currently, practitioners who recommend elective surgery for children with
DSDs rely on the belief that parental consent is sufficient authorization.
However, given the medical, legal and ethical complexity of the decisions
involved, it may be time to reconsider the entire decision-making process,
beginning with who should be at the table.

Anne Tamar-Mattis, JD, is Executive Director of Advocates for Informed
Choice, Cotati, Calf. She welcomes responses to this article at
director@<hidden> org.

To read the complete article:
http://www.endocrin etoday.com/ view.aspx? rid=32542

[Kailana]

couldnt get the link to load right, just wondering if anyone else had the same problem, or is it just me.