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 Genitalia Illustrated and Explained

There is a lot of variation in how the genitalia develop from person to person in all of us. Nature provides us with a wide spectrum of forms, onto which our society imposes two absolute categories of male and female. In my last post, I described how all people start out with the same genitals in the womb, and how the phalloclitoris differentiates during development. In this post I will discuss the range of natural genital forms, explaining how they develop from the shared embryonic phalloclitoral structures.

I will illustrate this post with simple diagrams. I know that there is a lot of interest in what intersex genitals actually look like—most of the people who find this blog do so by searching for these words. I've discussed elsewhere why I will not post medical photographs of intersex people's genitalia—these often picture children photographed without their consent, and I will not participate in their exploitation. But I do support people's impulse to know more about the range of human forms. I want to help lift the veil of medically-enforced secrecy that makes our bodies invisible, so that interesex bodies can be demystified and accepted. So: diagrams it is.

I will start by reviewing the structures of our shared original genital form, and showing how they develop in what are deemed “normal” males and females.

The Embryo

We all begin life with genitals that have four basic external elements. At the top is the part numbered 1 and colored pink on this illustration: the sensitive end of the phalloclitoris, which can differentiate into the head of the penis or clitoris. Below it is structure 2, drawn in orange, which is capable of differentiation into either a phallic shaft, or clitoral body and labia minora. In the center is structure 3, drawn in green: an inset membrane that can widen or can seal as the fetus develops. It will form the urethra, and the vagina, if any. And at the outside is the fourth part, colored blue: the labioscrotal swellings, which can develop into labia majora or a scrotum.

“Normal Differentiation”

You can see how the four sectors of the embryonic genitalia differentiate in the diagrams of “typical” male and female genitals pictured here (illustrated without the foreskin or "hood"). Click on any illustration to see it larger. Notice that the pink phalloclitoral head points downward in typical female development and upright in typical male development. The orange body of the phalloclitoris separates and is buried beneath the labia in females, while it closes around the urethra and forms the penile shaft in males.

Sex variance occurs in many forms, but they are not random. Intersex conditions are produced by regular patterns of variation in development of one or more of the four parts of the embryonic genitalia. Let us consider a series of intersex conditions to see how these variations arise, and how they are framed by doctors.

“Aphallia”

Aphallia the term given by doctors to a form of sex variance produced when the first two sections of the embryonic genitala do not develop. While this is equally likely to occur in individuals with ovaries as those with testes, it is only generally commented upon medically when the individual has testicles and XY chromosomes. This illustrates how Western medicine is permeated by a strong gender bias. Having a large, erectile penis is considered a necessity for males, and its absence a tragedy of the highest order, to be addressed by somber medical articles. Having a clitoris capable of sensation and erection, however, is given little attention—so little that its congenital absence is treated as worthy of nothing more than a footnote.

The gendered beliefs that permeate Western medicine are further illustrated by the treatment plan for infants with testes who have aphallia. American doctors typically give these children sex reassignment surgery to remove the testes and create a vagina, it being apparently impossible to tolerate the idea of children being raised as boys without a penis. Without this surgical castration, the children could grow up to be fertile, but their fertility is medically sacrificed without their consent. What is particularly noteworthy is that doctors speak of the sex-reassigned patient with aphallia as growing up to have “normal female sexual function.” “Normal,” for a female, is thus medically defined as being capable of receiving a penis in a vagina, not having sexual pleasure.

“Microphallus”

Some people have large feet and some people have small ones; some have large noses and while others' are petite. When the phalloclitoris is quite small in a person with external testes and a male genital configuration, doctors say the individual has “microphallus.” If the testes are deemed "inadequate," doctors often advise sex assignment to female in infancy as they do in the case of aphallia, because life as a man with tiny sex organs is deemed tragic. Again, the individual's fertility is sacrificed without consent. If the testes are considered normal the child may be treated instead with injections of testosterone, in effect triggering puberty in toddlerhood and leading to moderate enlargement of the clitorophallus (along with other premature pubertal effects such as the development of adult patterns of body hair).

Rarely considered as options by doctors are simply allowing the child to live life as a male with a small penis, or to decide for zirself what course of action to take. Whether the sacrifice of some or all sexual sensation to have genitals that appear female is better than living life as a person with testes and a very small phallus is not a question that science can give a single “correct answer.” It is a subjective and highly personal decision, and will be driven most strongly by the gender identity the child grows to develop. I and other intersex advocates believe that only the intersex person can make such a lifechanging decision, and that for doctors to force their choice upon an unconsenting child is both arrogant and cruel.

“Clitoromegaly”

When a child with typically-male-configured genitals has a large phalloclitoris, the doctors make admiring jokes with the parents. But when the child is female, having a large phalloclitoris is deemed a “birth defect.” Despite the lack of any functional harm from having a large clitoris, doctors perform surgery to “reduce” it to the “acceptable” female range. This often seriously impairs sexual sensation. Although today doctors like to brag that they preserve sexual sensation because they have abandoned the older surgical treatment of “clitoral amputation,” usually some sensation is lost in “clitoral reduction,” and sometimes the phalloclitoris loses all sensation, even though some of the tissue is permitted to remain. It is especially ironic that the removal of part of the clitoris in traditional female circumcision practices is renounced as “female genital mutilation” by Western doctors, yet they perform a similar procedure in cases of “clitoromegaly” without compunction.

“Chordee”

The head of the phalloclitoris bends down in typical “female” configuration. When it does so in a person assigned male, it is termed “simple chordee.” In some individuals, the only atypical characteristic is the folded-down head of the phallus, which is of typical penile size. Doctors present this status as a “malformation of unknown cause,” rather than as a typically-female shape of the phalloclitoris in a male, because they are averse to terming any condition in a child assigned male “intersex.” But chordee is not a random alternative shaping of the penis, as if the penile head might have been equally likely to spontaneously bend in an S-shape. Chordee arises when Sector 1 of the embryonic tissue develops in the “female” configuration, while the rest of the genital development is typically male. Doctors usually suggest surgical “correction” of the phalloclitoral bend, citing locker-room teasing and a purported challenge to fertility. Such surgery presents a serious risk to sexual sensation in the penile head. Furthermore, fertility is not impaired by having a bent or curved penis—the production of sperm is unaltered. Penetrating some partners may be more difficult, but there are many ways to engage in both sexual interaction and fertilization other than via penetrative sex, and only the possessor of the bent penis can decide whether it makes sense to risk the sacrifice of sensation in the phalloclitoral head to make it easier to engage in penetrative sex with partners who prefer a narrow penis. (Some partners may find the phallus with chordee to be more sexually stimulating than a typical penis.)

In other individuals with chordee, the phalloclitoris is of intermediate size. It appears as an intermediary form evenly balanced between the male and female manifestations of the phalloclitoris. Often the individual also has a shallow vagina (discussed below under “hypospadias”).

Whether individuals assigned female at birth may have phalloclitoral heads that do not bend down like a typical clitoris but conform instead to the linear shape typical of males is not discussed in Western medical literature, with its obsession with penises and general disinterest in clitori. I consider it extremely likely that this unnamed counterpart to chordee does occur.

“Diphallia”

Section 2 of the embryonic genitalia is generally expected to fuse into a single penile shaft in male development, or to spread apart to form the two clitoral crura around the labia majora in female development. If the genitals devleop along male lines but the two sides do not fuse, the individual is born with two separate phalloclitori, side by side, each associated with one testis and having only one corpus cavernosum. Doctors remove one of the phalli (the one deemed smaller, no surprise there), though as in clitoromegaly there seems to be no functional danger involved in having two clitorophalli. This gential configuration can be associated with actual functional problems like an imperforate anus, obviously a true surgical emergency, but constructing an anus has nothing to do with removing half of the phalloclitoris. Doctors do not deem diphallia an intersex condition—the off-the-cuff reading is that the child is “doubly male”--but in fact the clitorophallus has developed in a manner intermediate between male and female norms.

A rarer bodily form than diphallia is phalloclitoral duplication, in which the embryo begins to twin in the genital region but ceases there—similar to what happens in the case of conjoined twins or people born with three legs. The individual is born with two penises or clitori, which may be located side-by-side or one above the other.

“Hypospadias”

Physical statuses in which a child develops external testes while Sections 2 and 3 of the phalloclitoris develop atypically are grouped together under the medical term “hypospadias.” Segment 3 of the embryonic genitalia forms the urethra and vagina, if any. In the normative male configuration, there is a urethral opening at the tip of phalloclitoris, and no vaginal opening. In individuals with hypospadias, the urethral opening is closer to the typically female location, and there may be some vaginal tissue. Individuals born with hypospadias in the U.S. today are almost always assigned male, and doctors rarely call them intersex. This is an ideological choice rather than one driven by anatomical logic. The medical belief seems to be that if a child has external testes and the clitorophallus can be surgically reconstructed along penile lines, then the child should be assigned male and no question ever raised in the parents' minds about the child having an intersex status. Doctors believe being seen as less than “fully male” is untenable for a man.

The degree of difference between typical male morphology and the genital arrangement of individuals with hypospadias varies widely. In many, it is simply a displacement of the urinary meatus from the very tip of the penis, as shown in the first illustration above, so that the urinary orifice is located lower on the phallic head, which is of ordinary penile size. Doctors “correct” this in childhood, claiming that having a “displaced” urinary meatus is unacceptable, as it will lead to teasing, and ostensibly problems with urinating in a standing position and fertility. Loss of sensation in the head of the penis, fistulas, and problems with recurrent bladder infections are deemed a better outcome by doctors than perhaps needing to sit down to pee—though in adulthood, many who have had this surgery complain that the side effects outweigh any benefits in their lives. The idea that fertility is impaired by having semen emitted from a position slightly lower down on the penis is laughable.

Hypospadias is measured by doctors in degrees. The greater the degree, the more the phalloclitoris assumes a vaginal configuration. The urinary outlet takes the shape of a small vaginal slit if located further from the head of the phalloclitoris, becoming larger if located further down the shaft, as in the second illustration above. If the urethral opening is located at the base of the phalloclitoris, the condition is termed “perineal hypospadias.” In people born with this configuration, the genitalia appear intermediate between the female norm and the male, with a vagina located in front of or between the labioscrota. Testes are located in the labioscrotum, with surface skin that can appear more close to typical labia majora or to scrotal skin. The clitorophallus is often intermediate in size and the head may bend down in the typical clitoral configuration called chordee. While children with “perineal hypospadias with chordee” have genitalia that look closer to the female norm than the male, they still may not be classified as “officially” intersex by American doctors, and surgery that closes their vaginas, dissects the clitorophallus from the perineum, and repositions the urethra to the head of the clitorophallus is termed a “repair” rather than sex assignment surgery. Such extensive surgery is painful, life-altering, and usually leads to loss of sensation. Furthermore, a substantial number of people born with this intermediate configuration grow up to identify as female, despite their infant surgical sex assignment to male, and bitterly resent having been given surgery that removed their vaginal tissue while forming their phalloclitori into the sensation-impaired semblance of a penis.

Rarely mentioned by doctors in articles discussing hypospadias is that it can be accompanied by intermediate internal sex structures, particularly a large “prostatic utricle”. (The embryonic structure that typically develops into a uterus in more female bodies forms a small “utricle” in the center of the prostate in bodies that are typically male.) In intersex bodies, this may exist as a small or average sized uterine structure within or aside a prostate—the greater the degree of the hypospadias, the more likely there is a utricle, and the larger it is likely to be. It fascinates me that the fact that people with hypospadias often have a uterine structure, evident in any literature search on the prostatic utricle, is rarely mentioned in medical descriptions of hypospadias, while much rarer associations between intersex conditions and cancer are often mentioned in articles on other intersex conditions. I believe it is not mentioned because discussing a uterine structure would undermine the medical framing of children with hypospadias as “boys with a penile malformation” rather than as intersex children.

"Vaginal Agenesis"

In some individuals, external genitalia are formed which appear close to the female side of the spectrum, but Section 3 only creates a shallow vagina or smooth patch of lubricating skin. Internally, such children may have no gonads, or may have ovaries but no uterus, or may have ovaries and an atypical uterus. Individuals with vaginal agenesis are always called female rather than intersex by doctors, even when they have no gonads and will develop no secondary sexual characteristics (such as breasts or facial hair absence/presence) without taking hormone medications. Again, Western medical ideology seeks to define away intersexuality as much as possible.

There is a lot of attention given by doctors to the creation of a vagina for children with genitals that otherwise appear female to them. This is framed as necessary for “sexual functioning,” presuming that forms of sexual activity other than penetration of a vagina by a penis are “not really sex.” As is the case with many intersex bodies, surgeries are often performed which sacrifice the capacity for sexual sensation out of an ideology that this is necessary for “normal sex.”

“Female Pseudohermaphroditism”/ Congenital Adrenal Hyperplasia

In some intersex conditions, the four zones of the external genitalia develop so that they look typically male (with urethral opening at the tip of the penis, scrotum, and no vaginal opening) but the individual possesses a uterus and ovaries, and the scrotum is empty. The most common diagnosis in people with such a bodily form is congenital adrenal hyperplasia or CAH in XX individuals. While most any person on the street would say that having both a penis and a uterus is an intersex bodily form, doctors hem and haw, and say instead that the child, while intersex, is a “pseudohermaphrodite,” somehow really female. This is based on the move by doctors almost a century ago to define intersexuality out of existence by saying that only individuals with the very rare condition of having one ovary and one testis, or having intermediate ovotestes, are “true hermpahrodites.” An intersex person with testes was deemed “really male” and anyone with ovaries “really female” by the creation of the term “pseudohermaphrodite.”

At the time doctors came up with the idea of the “pseudohermaphrodite,” sex assignment surgery had not yet been developed. Today, however, doctors insist that babies with CAH should be surgically assigned female in infancy. The language of “female pseudohermphroditism” is used to sooth parents who are shocked at the idea of a doctor cutting off their baby's penis. Doctors tell them that it is not “really” a penis, but is “really a clitoris” that is malformed. The fact, of course, is that all babies have phalloclitori—and that their baby's is exactly like any other typical boy's penis. If doctors were consistent, they'd have to call all men's phalli “malformed clitori.”

In any case, doctors in the U.S. routinely perform what they term “clitoral reduction” on children with CAH—that is, removal of almost all of the phallus--and cut apart the scrotum to give it the form of labia majora. In pressing this surgical sex assignment plan, doctors present parents with an odd assessment of the risks and benefits of such a course of intervention. They gloss over the fact that cutting off most of the phallus seriously impacts adult sexual sensation. They tell parents that this must be done to avoid the catastrophe of adult menstruation through the phallus. (Note that they do not inform parents of children with perineal hypospadias that menstruation is a “danger,” or suggest that children with hypospadias be assigned female to avoid penile menstruation.) Doctors do not inform parents that an alternative would be hormone treatment to suppress menstruation, or that their children could grow up to identify as men and function sexually as males, albeit without semen production. (Some ejaculation could be possible, but it would not contain sperm.) Rather than warn parents that many children with CAH grow up not to identify as female and to despair over having been effectively castrated, they warn that the children “have a heightened risk of lesbianism,” which is an eye-goggling assertion that is both homophobic and ignores the issue of gender identity.

“Male Pseudohermaphroditism”/ Androgen Insensitivity Syndrome

Children with complete androgen insensitivity syndrome or CAIS are the counterparts to XX CAH children. Their external genitalia take the typical female form, but internally they lack a uterus, and in the place where one would ordinarily find ovaries, they have internal testes. Because their bodies do not respond to testosterone, they grow up to develop very feminine secondary sexual characteristics at puberty, though they will never have menstrual periods. Despite their typically-female appearance, doctors call these individuals “male pseudohermaphrodites” because they have testes. However, in contrast to the treatment of children with CAH, doctors do not go on to say that they CAIS children have “malformed penises” that must be surgically altered to fit their “true sex.” Instead of urging genital reconstruction, they tell parents to raise their CAIS children as girls, warn parents that their internal testes could possibly present a risk of cancer, and tell them to have the testes removed.

Unlike children with CAH, who often regret their sex assignment surgeries, individuals with CAIS seem to usually accept having been assigned female at birth. This is probably because of the contrast in the intersex individuals' experiences. Children with CAH are assigned female at birth via traumatic, scarring surgeries that impair sexual sensation, and then must take testosterone-suppressing drugs for life, while those with CAIS may not find out about their condition until puberty, retain uninjured and unaltered genitalia, and take no hormone-suppressant drugs. Nevertheless, despite typically identifying as female, these individuals are termed “male pseudohermaphrodites” on all of their medical records, and must live with the consequences of being deemed medically male throughout their romantic and sexual lives.

Some children have Partial Androgen Insensitivity Syndrome or PAIS. They are born with a wide range of phalloclitoral forms, from looking quite close to the male iconic form, to forms like that illustrated under “perineal hypospadias with chordee,” to looking typically female. Most have an intermediate form and are given childhood sex assignment surgery to one dyadic norm or the other. As usual, such surgery is traumatic, scarring, does not result in genitalia of fully “normal” appearance, and puts sexual sensation at serious risk. This probably explains why a third to half of individuals with PAIS grow up not to live as the sex they were assigned, while 80% of individuals with CAIS identify as “fully female.”

Those Not Pictured

Many bodies vary from sex-dyadic assumptions in ways that are not visible externally, so that they are rarely diagnosed at birth, such as variations in the sex chromosomes. We are told that “men are XY and women are XX,” but there are XX men and XY women who are not visibly distinct in their bodily forms from those with typical chromosomes. There are many individuals with XXY chromosomes, termed Kleinfelter's syndrome, with a typical male genital configuration but small testes—about 1 in 500 of people raised male turn out to have this intersex karyotype. People often only discover they are XXY when undergoing tests due to infertility, or sometimes in cases where they develop substantial breasts (“gynecomastia”). Another fairly common genetic variation is to just have a single X chromosome with no second sex chromosome at all, which doctors term Turner Syndrome. Having only 45 chromosomes instead of the usual 46 is associated with a host of physical problems, and the fact that the individual's gonads never develop is treated as secondary to the many physical and mental challenges the individual faces.

Other intersex conditions exist on a more macro level than tiny chromosomes, but are internal and so may go undiagnosed for years or for an individual's entire life. Included among these, ironically, are the only conditions deemed to constitute “true hermaphroditism” under medical taxonomies: the presence of an intermediate ovotestis, or even more rarely, of an ovary and a testis in the same person. I'll write more about “true hermaphroditism” in a later post.

Also not pictured are the bodies of people with an atypical sex steroid balance between the feminizing hormones (estrogens, progesterone, etc.) and masculinizing hormones (testosterone and its byproducts). Everyone produces all of these hormones, and requires both types for fertility and physical health, but those with bodies on the female size of the spectrum typically produce more feminizing hormones, and those with bodies on the male side typically produce more masculinizing hormones. Variations in this balance lead people with typically-female genitals to have higher levels of body and facial hair, muscle mass, likelihood of balding, and libido, and people with typically-male genitals to develop breast tissue, more curvaceous hips, etc. These variations are not termed intersex by doctors, but there is no logical reason why they should not be. Their intersex character is denied because most adults with such conditions have normative gender identities that match their genitals but are challenged by their contrasting secondary sexual characteristics. They and doctors together strongly assert that their variations do not make them any less male or female. While I agree that no one's gender identity should be deemed undermined by their physical appearance, I believe it would help all sex and gender variant individuals if society and medicine would acknowledge the prevalence of physical sex variance while supporting individuals in their gender identity assertions. Some intersex activists disagree, wishing to limit the conditions that will make a person “count” as intersex, and patrolling the boundaries of the community to exclude others as “wannabes.” Personally, I find this cruel and counterproductive. A woman with a beard lives a life in which her sexvariance is very visible, and saying she can't be included in a community of those with sexvariant bodies because she has typically-female genitalia does not make sense to me.

Another category of hormone-related variance includes individuals who produce low levels of sex steroids and whose bodies do not change much at the usual age of puberty. Such individuals are almost always treated with sex steroid therapy, without presenting them with the option of living in their androgynous bodies medically unaltered.

Finally, let me note that this catalog of intermediate bodily forms is not exhaustive. In my understanding, anyone whose body varies from the iconic male or female dyadic norms is sex variant, cannot be wished out of the intersex rubric by tricks of medical terminology, and should not be excluded from intersex community by gatekeepers.

We need society, the medical field, and intersex communities themselves to acknowledge that nature provides humanity with a wide range of forms, so that all of our bodies can be recognized as valid. Unless there is an actual rare functional problem, our bodies should not be altered in infancy, and only those functional problems should be addressed. Our genitals should be altered only if we ourselves request it, to make ourselves comfortable in our own skin, not to make society comfortable by our medical erasure. Society must come again to embrace the diversity that is nature's gift to us.

Viewing Intersex Genitalia (Note: Explicit Artwork Included)

Disclaimer

This is a drawing I did of the genitals of an intersexed person. If you don't wish to see explicit material, please skip this post. If you are an intersex person or an ally of ours who is concerned that posting images of intersex people's genitalia is abusive, please read my previous post. I discuss at length the many ways that photographs of us are exploited by medical practitioners and others, and why I believe humane images are necessary. Thanks.

Does a Picture Paint a Thousand Words?

When you look at the drawing above, what do you see? I see a set of external genitalia, an intersexed set that falls pretty near the center of the spectrum of male-to-female genital arrangements. Most people in our particular culture and historical moment apparently see something else. They see. . . something wrong. They want to know what it means. They want to be told whether these bits belong to someone who is "really a man" or "really a woman." And the authority they turn to to answer this (impossible) question is not the person possessing the genitals, nor regious authority, nor social scientists, but the medical profession.

Doctors get a lot of prestige from being the people who get to interpret life's mysteries for the masses. And they have an answer. I'll tell you what that answer is in a little while, but first, before what you see gets filtered through the medical lens, let me describe the structures you see depicted.

Anatomy of an Intersex Person

There are a great number of intersex bodily configurations, both internal and external. Our genitals come in many shapes and sizes--as in fact do those of people who are not categorized as intersex. What you see in this set of intermediate genitalia includes a phalloclitoris of intermediate size. Apparently many people experience something similar to a foreground-background illusion looking at the phalloclitoris (you know, like the illusion that looks either like two faces or a vase, which you can see here). They see a little penis, then a big clitoris, then a little penis. This flickering view has nothing to do with the genitals themselves, but with the lens of dyadic sex we've been trained to expect. This illustrates how we don't just see the world-in-itself out there, but a filtered view that imposes cultural understandings onto what we see.

The shaft and glans of this individual's phalloclitoris are mostly covered by a sheath of sensitive skin that we learn to call a clitoral hood or penile foreskin--again, dyadic terminology. The sheath of skin is bound down on either side, and the underside of the phalloclitoris is attached to the individual's body. Thus, when this person's phalloclitoris erects, it does not stand out from hir body but stays tucked close, pointing rearwards, as is typical for a clitoris.

At the center of this person's genitalia you see an invagination. It is fairly shallow, unlike the deeper vagina of someone with a classic female genital configuration. It is lined with delicate, lubricating skin. The urethral meatus ("pee hole") is in the central slit of the invagination.

Around the shallow invagination you see structures which are intermediate between labia majora (in female anatomic terms) or scrotum (in male terms). In this individual, there are testes that have descended and are held within the labioscrotum.

What Doctors See

As I've explained in an earlier post (here), doctors are the enforcers of sexual dyadism, and see all people as having a "true" or "best" sex, either male or female. Most often they like to assign intersex people to be female, and they remove or "reduce" our phalloclitori. They believe, though they tend not to say this, that it's better to be a female-assigned person with a surgically-constructed clitoris that feels nothing than to be a male-assigned person with a small penis. What they say, I kid you not, is that "it's easier to make a hole than a pole."

Doctors still take the "hard route" and attempt to construct a penis at times, and it's in individuals like the one whose genitals I've drawn here that they are most likely to do it: those with external testes. Internal ones they generally remove, claiming they pose a risk for cancer, but external ones they tend to leave in place. Finding external testes, doctors proclaim an intersex person to be "really male." Therefore, doctors looking at these genitals don't see a person of intermediate sex, they see a male with a "disorder of sex development" that they would term "perineal hypospadias with chordee."

On Hypospadias

As I've said, genitals exist on a spectrum. People with hypospadias run along the spectrum from maleformed genitals to the smack-dab center illustrated in this post. In people with what doctors call "first degree hypospadias," the genitals include typical testicles and a penile form that varies from the average male's only by having the urethra open, not at the center of the head of the penis, but on the underside of the head. Generally, the further down the shaft or perineum that the urethra opens, the more intermediate the genital form (doctors would say "the more severe the malformation").

Doctors almost always propose surgery for infants with hypospadias, even when there is only a small shift of the urethral opening. This causes scarring and loss of sensation, perhaps very mild, or perhaps leading to full numbness of the penile head and underside of the shaft. Constricted areas, holes that leak urine ("fistulas"), and recurrent bladder infections are common side effects, but are all deemed by doctors to be outweighed by the benefit of surgery. That benefit is basically avoiding the social mockery doctors presume is unavoidable for people with atypical genitals--the "locker room factor." Many male-identified people who had childhood surgery for minor hypospadias are very critical of the decision that was made for them, and, like intersex advocates, argue that no genital surgery should be performed unless and until a person grows up and chooses it. They'd rather have a penis with an off-center urethral opening that is fully sensate than a numbed phallus with an on-center urethra.

For people with perineal hypospadias, the consequences of surgery are more severe. Instead of having the functional genitals with which they were born--atypical but sensate intersex genitals that lubricate, erect, and experience pleasure--they wind up with small surgically-constructed penises that may be severely scarred and mostly numb. Instead of simply sitting down to pee, they may deal with multiple fistulas, a stuttering urine stream, and frequent bladder infections. In individuals with chordee, as in the drawing, since the clitorophallus is joined with the body, part of the glans and/or shaft will be cut off, left buried in the perineum or excised completely. Often there are multiple repair surgeries over the course of childhood--which is a source of stigma, not a shield from it. And significant numbers of these individuals grow up not identifying with the male assignment they were given, and in deep distress over the loss of genital forms they wish they had been permitted to retain.

The Moral of The Post

If people could look at intersex genitals and actually see them for what they are, a great deal of pain and suffering would be avoided. What you see in the image is an intermediate genital form, not warped female genitals or disordered male ones. When a child with intermediate genitals grows up, zie may identify as female, or male, or intersex, and should be allowed to decide what surgery if any is appropriate--but few get that chance. Wrong decisions are made for us all the time, and this happens in large part because our families have never seen genitals like ours before. They don't know how to interpret what they see because they have no context. So they turn to the doctors, who get a lot of prestige (and money) out of diagnosing us, selecting a dyadic sex for us, and surgically altering us without our consent. And not knowing anything about intersexuality, families go along. It's for this reason that I think it's so important that people see images of the full genital spectrum.

Artwork by Luminis, marker on paper, digitally manipulated. Copyright retained.

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.