Wednesday, February 20, 2013

Hypospadias: Intersexuality and Gender Politics

If you are looking around for information about intersexuality, one of the first things you're likely to read is that "most intersex children are assigned female at birth."  This is in fact false.  

In the U.S. today, according to the CDC, one in 125 children assigned male at birth is surgically modified to fit that binary sex status.  The percentage of children assigned female at birth who are genitally altered in infancy to feminize their genitalia seems to be lower.  Exactly how much lower is very difficult to determine, since nobody is gathering the data we'd need to have.  The reason we know the 1-in-125 figure is because these children assigned male are all given the same diagnosis: hypospadias.  Hypospadias is the diagnosis given to most children born with intermediate genitalia who have external testes.  Rates of hypospadias have been increasing, and the CDC is collecting data due to concern about that.

The reason people continue to say that few intersex individuals are assigned male is that doctors term hypospadias a "penile malformation" rather than an "intersex condition."

I've written about this before in this post.  I noted there, "medical diagnostic categories are not logical, despite our ideology that they should be so. The majority of individuals born with intermediate sexual anatomies [and surgically assigned male] are not given an intersex diagnosis. I believe that what underlies this is gender ideology. And that gender ideology is this: masculinity is fragile, especially when it comes to what a man has in his pants. To live as a man with an inadequate penis is seen as intolerable. To have one's status as a 'real man' challenged is viewed as psychologically crushing. Thus, doctors feel, if they were to categorize someone as intersex and then assign them male, they would be acting cruelly.  Women, on the other hand, are perceived as more gender-flexible. After all, it's reasoned, a woman isn't shamed by wearing pants or taking on a power career. [Doctors view] female-assigned people as more comfortable with androgyny and as better at dealing with emotional challenges."  Because of assumptions about fragile masculinity and flexible femininity, doctors feel more at ease assigning children they designate as intersex female. Those they regularly surgically alter to conform to binary male sex norms, they wish not to label intersex.

I was contacted by some people after writing that prior post challenging my assertion that hypospadias is an intersex condition.  They countered that it was simply a minor displacement of the male urethra.  So I wanted to make my case more clearly.

Let's start with some illustrations.

All children start out in the womb with the same set of genitals, an intersex form.  As a rule I will not post photos of children's actual genitalia because it is exploitative, but in this case, I feel a medical image of the standard genital form of a fetus isn't going to cause additional emotional trauma to any particular child, so here's a photo:


Our society expects this intermediate genital form to differentiate before birth into two "opposite" binary sex forms (penis and testes, or vulva), but in fact, babies are born with genitals on a full spectrum between these two socially idealized poles.  Let's look at how medical professionals illustrate this sex spectrum.

When a child is diagnosed as having some form of XX, CAH, congenital adrenal hyperplasia, the sex spectrum is described by the "Prader scale," and the "stages" of the "condition" evaluated using this chart:



When a child with XY chromomes is diagnosed as having a form of AIS--partial or complete Androgen Insensitivity Syndrome--the sex spectrum is termed the "Quigley scale," and is illustrated like this:

  
You can see that both of these illustrations include 6 forms, although they number them in reverse order and with different numerals.  What they both show is that between a genital form considered typically female and one considered typically male, there is a common spectrum of intermediate forms.

This is equally true for children who are diagnosed as having hypospadias.   But medical illustrations of hypospadias are very different.  They do not picture the genitals as intermediate in form.

Instead of picturing the same range of in-between forms shown in the Prader and Quigley scales, medical illustrations of hypospadias variations show something odd: a carefully illustrated "normal penis" with a series of dots superimposed upon it to indicate the level at which the urinal meatus/ vaginal opening are located.  

 
The penis is always illustrated as erect, and often with a lot of illustrative detail to emphasize the "reality" of this imaginary ideal penis existing instead of the intermediate genitals actually present in intersex individuals who have external testes.



Let us be clear here.  A child diagnosed with hypospadias of an "advanced degree," be it termed perineal or posterior or scrotal, will have an intermediate phalloclitoral form with a substantial invagination, not a large, erect phallus with a dot at the bottom.  They'll look more like the Prader 2 or Quigley 4.  I'd illustrate such a child's genitals more like this:



Why would medical illustrations of intermediate genitalia be representationally accurate in the case of intersex children diagnosed under the rubrics of AIS or CAH, but inaccurate if highly detailed in the case of intersex children diagnosed under the rubric of hypospadias?  Only gender ideology can explain this.  Children diagnosed with CAH and AIS are routinely assigned female.  But children with hypospadias are surgically "corrected" to male, and to undermine the "adequacy" of a male's phallus is treated as untenable.  Parents (and doctors!) must be reassured by looking at the erect, large, ideal penises drawn in the hypospadias illustrations that the genitally intermediate flesh of the child they see is illusory, and that an excellent penis will soon be revealed by the scalpel.  

So: medical illustrations of hypospadias, and the medical assertion that it is not really an intersex condition, relate to our ideologies of masculinity.

The differences in medical approaches to intersex children routinely assigned female and routinely assigned male extend further than illustrations and terminology.  They also determine all the tests and evaluations the child will receive.  If an intersex child lacks external testes--the determining characteristic of a hypospadias diagnosis--that child is routinely subjected to a battery of tests: genotyping, endocrine screening, medical imaging scans.  This is not the case when an intersex child has external testes.  In fact, even suggesting that a child with intermediate genitalia but palpable testes receive any sex-related tests at all is considered "controversial" by doctors.  Since hypospadias is defined as a penile malformation that is not an intersex condition, why would anyone wish to test sex chromosomes, hormone levels, or internal reproductive structures?  It's presented as an unacceptable waste of time and money, in an affronted tone.  

In fact, individuals born with hypospadias do commonly have other sex-variant characteristics.  An example is the presence of what is termed a substantial "prostatic utricle," a uterine structure that may be small or full-sized that connects to the vaginas present in these children at birth.  While the "pseudovaginae" are removed and closed during infant genital "normalizing" surgery, doctors do not test for the presence of a uterine structure.  People diagnosed with hypospadias and their doctors generally only become aware that there is a utricle present if something goes wrong, such as the development of uterine cancer or painful cysts--and then usually by accident during imaging scans for some other presumed cause of the patients' symptoms. 

I want to note that many intersex people assigned female at birth complain of all the invasive tests and screenings and procedures to which they are subjected in childhood, so the fact that intersex children with hypospadias diagnoses avoid these is not necessarily a bad thing.  But not even thinking of checking for a uterine structure in someone born with hypospadias who presents to a doctor with pelvic pain could have very negative health consequences. 

It is clear is that intersex children diagnosed with hypospadias are treated very differently than children with other intersex diagnoses.  Rather than being treated as bizarre and interesting medical cases that require a lot of medical study and intervention, they are treated as normal boys with a little urethral displacement issue.

The thing that children diagnosed with hypospadias have in common with other intersex children is that they are subjected to genital normalizing surgery that can have many negative consequences.  Medical texts list as unwanted consequences of hypospadias "repair" surgery urethral fistulae, strictures, and diverticulae, recurrent urinary infections, "excess skin," hair-bearing skin, persistent chordee, erectile difficulties, erectile persistence, chronic inflammation, and a condition called balanitis xerotica obliterans.  Textbooks are oddly silent on the issues of loss of genital sensation that are very common, and the fact that children born with genitals in the middle of the sex spectrum are particularly likely not to identify with the sex they are surgically assigned at birth.

Some children who are diagnosed with hypospadias have genitals that are quite close to the binary male ideal in our culture.  For them, medical interventions may be fairly minor, and the side effects may be modest.  They are very likely to see themselves as typical males, and are probably unlikely to wish to be identified as intersex because they share our society's pattern of fragile masculinity.  I am empathetic with their position.  But we should be able to support the gender identities and dignity of people born with hypospadias who identify as men without resorting to inaccurate medical illustrations and illogical medical taxonomies.  

Hypospadias is an intersex condition.  The surgeries we perform on unconsenting intersex children without their consent have lifelong consequences.  These can be profoundly negative for children whose genitals are dramatically altered--something that intersex advocates decry all the time.  But we should also question why we routinely risk the loss of sexual sensation in the glans of the male-assigned child whose urethra is in a slightly atypical place.

All of us born intersex deserve to be recognized as such, and to be granted autonomy to make our own decisions about what "normalizing" surgical alterations we wish, if any.  Putting an end to the routine genital reconstructive surgery performed on the many thousands of children diagnosed with hypospadias each year should be considered an important point of intersex advocacy.



9 comments:

  1. As a spouse caregiver of CAIS, I could not agree with you more that medical community are messing up the situation more than helping. I wish the medical community would learn to say "I dont know" instead of exploring unknown areas of science that they fully fail to understand or comprehend the full implications of their actions. We are NOT lab rats, here is a surprise, we are HUMANS.

    For years we have been advocating calling for a STOP to "normalization" surgery, especially in its current protocol during a marriage. Where is the scientific basis for having a normalization surgery of an adult intersex person during a marriage? I know of intersex people in their 60s and 70s with no major health issues or cancer risks. Recently, UN released a statement in support to STOP normalization surgery.

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  2. My husband has this condition. A few months after his birth he underwent corrective surgery, it was obviously a pretty severe case as the scar runs from the tip of his penis down to his anus. He is very feminine and we joke often about him being my wife. He also holds his penis a lot, almost like he's protecting it. He recons he's the next step in human evolution, maybe he's right. X

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  3. Replies
    1. For lack of a better term Jack J. Smith, your a fucking idiot!!

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  4. Thank you for posting this, your blog really helps explain things.
    I was raised female and did not know about my intersex condition until a few years ago. At first, I was confused and didn't believe it.
    How? Why?
    I could still menstruate, was still fertile, I looked just like a girl and acted like one, dressed like one and everything. So how was I also a male?
    Ah go figure, the abnormalities.
    I felt that I was really different than others in my late childhood ( Also found out that I'm a pansexual ) so this wasn't exactly a trauma but I was left with conflicting feelings regardless.
    It was hard. Looking in the mirror and seeing a beautiful woman, yet behind that beautiful woman was a male.
    Who was I really? Male or female?
    I questioned this over and over again.
    I read your blog and I think I now know.
    It's not about "what" I am, it's about "who" I am.
    I will not turn my back on my male side as it will always be a part of me, but I decided to continue being a woman. I don't wish to be labelled in boxes either as a male or female. I am just me.
    Thankfully, I have a loving boyfriend who still loves me the same.
    I agree on your posts in this blog.
    Although I decided to continue being a woman, I am uncomfortable as well as angry of the pressure placed on me to conceive a child.
    Yes, I am both a male and female. Yes, I am fertile. That doesn't mean I, and other fellow intersex people who are like me, should be pressured like this to have a child so to make medical "professionals" look like a dashing hero who "cured" them.
    I will decide for myself if I even want a child or not.
    I will continue being a lady yes, but open to admitting I'm also a male.
    Hence why whenever I have papers or forms to fill out,

    I leave the gender box blank.

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  5. I find it difficult to understand the medical profession. I spent countless resources preparing for my office visit with an Endocrinologist. I had my records sent to her office. My cat scan was forwarded to her office. I did hours of research preparing questions and learning "the language" of her specialty. I even showered before going! We waited 20 minutes to see the doctor. While we waited, I was grilled by the medical assistant. Finally, the doctor arrived and told me that I knew more about my condition than she did. Then she told me she couldn't help me. Apparently the medical schools are not covering anatomy & physiology as they once did. I am seeing a surgeon next week. He has already indicated that he may not be able to help me either.
    I am appealing to you, the readers, to help me find the doctor who specializes in Disorders of Sexual Development (DSD) more commonly known as “Intersex”. This was formally known as “true hermaphroditism”. I live in the Las Vegas area so I can see someone within a 300 mile radius if needed. I can also fly to a limited amount of cities if the need presents itself. I have a limited amount of insurance through Aetna & even more limited funds. There is a sense of urgency because I am experiencing a great deal of pain associated with this condition. If you know of anyone who specializes in these conditions, please let me know via the following email, jebenedict@yahoo.com . Thanks for reading! http://jebenedict.blogspot.com/

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  6. This is a fantastic discussion of hypospadias and intersex. I am no expert-- I'm not sure there are any-- but I am an intersex man who has practiced psychotherapy (as an intern) for four years at an inner city clinic specializing in LGBTQI clients, I have treated several intersex clients, and done some extensive literature review.

    You absolutely nailed it-- OII and ISNA have taken similar positions in many posts and articles, but this is probably the most comprehensive, articulate and rational article I have ever read on this subject.

    Damn good job. I'm going to start hunting on this blog for your contact information, because I hope I can cite some of your work in upcoming presentations.

    Forgive me if I remain anonymous... for the moment. My personal feeling is that intersex folks should disclose very, very carefully, because-- and in this particular way, we share a lot with our trans brothers and sisters, even if we are different in so many other ways-- it is very easy to overexpose ourselves. I am now out to probably 65% of my friends and 70% of my professional community, and it's taken me four or five years to even get this far.

    Look forward to corresponding with you at your convenience if I can find you. Thanks for your fantastic work.

    --Catalyzt

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  7. Dear Dr. Costello, I am indebted to you for you generosity in allowing me to post overly long comments on your site, and in your forbearance when I presume to propose answers to questions directed to you. If I may, to "June 1, 2013" I propose that this is very much a part of evolution. Many intersex conditions may be a memory of serial gender of Neanderthals. Compare how often you see a publicly intersex person presenting characteristics identified by geneticists to be Neanderthal (red hair, freckles, 13 rib pairs, green/hazel eyes or in my case the late crossover Palmarplantarkeratodermabothnian). Or...it is an attempt by evolution to create something new. In the modern world, gender-specific tasks are not as separated as before, therefore, not as necessary. If task dimorphism is no longer needed, then maybe gender dimorphism isn't either. The genuine hermaphrodite may be the next thing in evolution. Sadly, as Darwin theorized, there will be many attempts (by evolution as a force of nature) which will not be complete or completely successful (I am one such evolutionary failure who celebrates how close "he" may have come to "success"). As a reply to Catalyzt, I offer that I must remain anonymous to protect my brother's privacy (he may be more intersex than I am). Also, while almost all of my friends know I am intersex, many of my customers would not accept this, to the injury of my co-workers.- Tupungato.

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  8. Thank you for this article. I have lived with this for so long. It is good to read and understand all the internal struggles I have had to deal with all on my own.

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