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.

Intersex 101

What is intersex?

In our society, it’s common to think that all people are born either male or female. But the biological truth is that sex is a spectrum, not a binary. It’s typical for people to lie near the male or female ends of the spectrum, but many people are born with bodies closer to the middle. Sometimes this fact is immediately clear at birth, because a baby has intermediate genitals. Sometimes a person may look male or female on the outside, but have different internal organs than would usually be expected. And sometimes a person may have a body with typical female or male organs, but have chromosomes that do not match expectations.

How common is intersexuality?

About 1 in 150 babies are identified at birth by doctors as having a "disorder of sex development" due to having visibly atypical genitalia. Other individuals are not diagnosed at birth, as their genitals appear fairly standard, but later are found to have an intersex condition. Some find out because they encounter fertility problems, or have a medical scan done for some unrelated reason. Some people never know--do you know if your chromosomes are XX, XY, XXY, or some other variation?

What is the gender of an intersex person?

The way to tell the gender of an intersex person is to ask them. Often intersex people identify as men or women, because that is contemporary Western norms frame gender as a binary. But a growing number of intersex people identify themselves as nonbinary--as do a growing number of people who are endosex (not intersex). You can’t tell by looking at an intersex person’s body what their gender identity will be—different people with similar-looking intermediate genitals will have different identities. Simply respect each individual’s sense of self!

What are central concerns for intersex people?

Contemporary Western medicine frames being intersex as a disorder, and being endosex--having a body that matches expectations of binary sex--as necessary and good. Intersex status has been treated as a source of shame in the U.S., which means that most intersex people are in the closet about their status. We have been called “freaks” and “monsters,” have been treated as sexually titillating, have been excluded from international sporting competitions, and have been subjected to medical treatment without our consent. Intersex people deserve to have their bodies, their gender identities, and their choices respected.

A major complaint of many intersex people is that they were subjected to childhood surgery that they are unhappy about. Every day in the U.S., hundreds of babies are surgically altered to “correct” atypical genitals to match social expectations. Doctors generally choose the binary sex they see as appropriate for an intersex infant based on appearance or surgical ease—and children may not mature to identify with this surgically-assigned sex. Furthermore, although doctors say they have gotten better at these surgeries over time, they often result in loss of genital sensation. I don't know about you, but I and many others would rather have sensitive genitals than somewhat-more-average-looking ones. Advocates for intersex people urge that no sex assignment or cosmetic surgery be performed on children. Instead, intersex children should be allowed to grow up to make their own decisions about what surgery, if any, they would like.

The decision about a binary sex of rearing for an intersex child is often rushed. This is because families are only given a day or two by law to decide whether to put an "M" or "F" on the birth certificate. What intersex advocates urge is that the requirement of listing a sex on the birth certificate be removed.  After all, in most states in the U.S. doctors used to be required to list a race on the birth certificate, but that requirement has been eliminated. The reason given for listing a sex--that it would help to identify an infant who was lost or abducted--is very weak. Footprints and blood samples taken at birth are vastly more identifying, and in any case, the family can give authorities information about the sex, race, hair color and other information about what a child looks like without it being listed on a birth certificate. So, removing the requirement of listing a binary sex of male or female on the birth certificate would not hurt anyone, and would give families of intersex children all the time they like to decide on a provisional sex of rearing.

Often, doctors and families try to keep chidren's intersex status a secret, even from the children themselves. Knowing that there is something deemed "wrong" with your body, but not what that is, is confusing. Knowing that your body is sex-variant, and that this is something that must be kept a secret from others, leaves a person feeling ashamed and isolated.  Advocates ask that children be informed about their bodies in a nonstigmatizing way. Having a body that is atypical can be seen as special--think of how our society celebrates having red hair, another atypical bodily status!

Sometimes an intersex child may be happy living in an assigned sex, but then experience bodily changes at puberty that are atypical for that sex. For example, an individual born with a typical-looking phallus but internal ovaries and a uterus will develop a menstrual period. If that child is happy being raised as a boy, he may find this difficult to deal with. In that case, the child should be given access to hormonal treatments to prevent menstruation and promote a typical male puberty.  If he wishes it, he should be given surgery to remove his ovaries. The decision should be his, and if he is comfortable leaving his body unaltered, that should be the course of action, and he should be supported in his embracing of his sex-variant body.

Intersex people may suffer from gender dysphoria if they were assigned by doctors to a sex but do not identify with it. If so, they should be assisted in securing hormonal and/or surgical treatment so that they can transition to the sex that is the same as their gender identity, if that is what they wish.

Intersex people and their families may also need supportive therapy. When a mother gives birth to an intersex baby, the family may be thrown into distress. It is especially important that the family receive support so that hasty decisions about “normalizing” surgery are not made. Adults who discover that they are intersex may also be thrown into an identity crisis and need support. And since all intersex people have to face lack of understanding and pressure to hide our sex status, many of us need access to counseling.

There is a myth that intersex people are almost always infertile. Sadly, many of us are infertile not because of how we were born, but because of surgical intervention in infancy. In fact, intersex people can have children (I did it. . .), but we may need fertility treatment and supportive medical assistance during pregnancy and birth.

What are some common types of intersexuality?

There are many conditions that lead to intersex status. I have no interest in getting overly clinical and showing the sort of medical photographs of dehumanized children with their genitals exposed that are so common in discussions of intersex. We are people, not . . . bits for display. However, I'll do a quick run through of some of the diagnoses given to intersex people, with physical description, to give some sense of how varied our bodies are.

People with Complete Androgen Insensitivity Syndrome usually have a clitoris, labia, and partial vagina, with testes internally. They develop breasts at puberty, but no periods. People with Partial Androgen Insensitivity Syndrome are born with intermediate genital appearance and internal testes.

People born with Congenital Adrenal Hyperplasia or CAH are born with a phallus of average or small size, an empty scrotum, a uterus, and ovaries. At puberty, people with CAH will develop breasts and get a period.

Hypospadias refers to a range of conditions in which a person has phallic tissue, but does not have the urethral opening at the tip. This can be a small displacement in an otherwise typical penis, or can occur with a fully intermediate genital appearance.

People who have Klinefelter Syndrome are born with XXY chromosomes. Individuals with Klinefelter’s have a penis and testes, are often tall and long-limbed, and may have wide hips and "gynecomastia," i.e. breast tissue in a man.

People who have ovotestes are diagnosed as "True Gonadal Intersex" by doctors. Ovotestes are gonads intermediate between ovaries and testes. Those of us with ovotestes may also have an ovary or a testis, and may develop a menstrual period, or produce sperm.

What can other people do to be allies for intersex folks?

The single most important thing allies can do is to refuse to treat intersex status as something shameful! Allies can help educate people about the fact that intersex happens and is not some sort of medical emergency requiring cosmetic surgery on infant genitals. Only an intersex person can determine what their gender is, and what surgery if any they want--doctors and parents can no more decide what gender a person will have than they can pick their sexual orientation or taste in music. Educating people about this will help lead to a day when parents welcome an intersex baby as a happy rather than tragic addition to the family.