UPDATE, August 28, 1:30 p.m.: On Tuesday, the California Senate passed the nonbinding resolution, making it the first-ever legislation in the United States to acknowledge the rights of intersex people.
Growing up, Pidgeon Pagonis had a recurring nightmare of being rushed down a corridor in a hospital bed, lights blaring overhead. Pagonis, who is intersex and whose pronoun is “they,” would look down to see bloody gauze between their legs. It wasn’t until later, when Pagonis read their medical records and pieced together the details of the surgeries they had undergone as a child, that they realized the nightmare was actually a memory.
Until then, Pagonis, now 32, believed what their parents, acting on the advice of doctors, had told them: They were just like any other girl, but they wouldn’t get a period or be able to have kids because their ovaries were removed due to cancer when they were a baby.
But in college, a professor mentioned intersex conditions in class, and Pagonis felt like a lightbulb had gone off. They obtained their medical records and read them, sobbing, behind a locked door in a tiny, cinder block-walled study room at DePaul University in Chicago. Pagonis learned that as a baby they were considered “entirely well” until a pediatrician noticed an “enlarged clitoris and small vaginal opening.” In the chart—which notes a “clitoral enlargement of 1.5 cm,” smaller than a peanut M&M—doctors labeled them a “male pseudo-hermaphrodite,” because they have what is now called partial androgen insensitivity syndrome (PAIS). This condition can cause people with XY (“male”) chromosomes to develop genitalia that is more typically female.
There was no medical need for the clitoral surgery they underwent at age 4. Doctors told Pagonis’ mom that her child might develop a complex about their enlarged clitoris, Pagonis said in an interview with Rewire.News. Today, Pagonis has been left with no external clitoris, making it almost impossible to experience sexual pleasure.
As Pagonis would learn, they are far from alone. As many as 1.7 percent of people are born with chromosomal or anatomical differences that put them outside the typical definition of “male” or “female,” although not all of them identify as intersex. Advocates often note that is about the same percentage of the global population with red hair. About one in 2,000 babies is different enough that doctors may recommend surgery; there’s no comprehensive U.S. database tracking the number of such operations.
Some surgeries on babies take place for medical reasons, like if an infant cannot pee, or has a rare condition where their organs are outside their body, Dr. Sue Stred, professor emerita of pediatric endocrinology at SUNY Upstate Medical University, told Rewire.News. The rest, Stred said, are performed “to treat the psychological stress of the parents.”
These medically unnecessary surgeries on children have faced criticism from human rights groups, the World Health Organization, and United Nations entities including the special rapporteur on torture, who said such operations “often … arguably meet the criteria for torture.” The surgeons who operate on young people say most are later happy with the results. But a growing number of patients have spoken out in recent years about how surgeries, performed when they were too young to understand—much less give consent—have deprived them of sexual pleasure, sterilized them, traumatized them, or altered their bodies to reinforce a gender assignment that is not theirs.
Last year, three former U.S. surgeons general called for an end to cosmetic genital operations on young intersex children. But a report released shortly after by Human Rights Watch and the intersex advocacy group interACT found no clinic has firmly instituted such a ban. It’s unclear if the number of such surgeries has declined.
Now, California lawmakers are poised to pass the first legislation to acknowledge the rights of intersex people in the United States. The resolution recognizes intersex children as “a part of the fabric of our state’s diversity” and calls for policies and procedures that defer surgery “until the child is able to participate in decision making.” If it clears a legislative panel Tuesday, it will head for a vote before the California Assembly and then final approval by the senate. Already, it has advanced further than any similar measure, after attempts to ban some surgeries on intersex children failed in Nevada, Texas, and Indiana.
For Hans Lindahl, communications director for interACT, the nonbinding resolution is a way to put medical professionals on notice that intersex people are standing up for their bodily autonomy.
“It’s kind of a warning shot,” Lindahl told Rewire.News.
“We’re Restoring Normal Anatomy”
The surgery Pagonis underwent at age 4 was not the only one they had as a child. At 13 months, doctors removed their internal testes. Contrary to what they had always believed, these testes were not ovaries, or cancerous, records show. While there is some risk of cancer developing in such cases, doctors interviewed by Rewire.News drew parallels to the threat of breast cancer, which does not prompt most people to have their breasts removed. Doctors may recommend keeping and monitoring testes, in part because they may provide hormones that can guard against bone conditions like osteopenia, which Pagonis developed. The operation left Pagonis dependent on hormone prescriptions and took away any possibility of having biological children.
When they were 11, Pagonis underwent a vaginoplasty.
“What they told me actually, when I was 11, right before the surgery, was that it was so that I could have sex with my husband when I was older, and that he wouldn’t see or notice anything was different about me,” Pagonis said.
Language like this instilled in Pagonis a lasting sense of shame about their body.
“They took things out of me, like body parts, and then they deposited shame inside of me to replace that, like glue to keep the lie alive,” Pagonis said.
Surgeons continue to use language that can be shaming to defend genital surgeries.
“These are not gender-reaffirming surgeries … these are children who have congenital anomalies like a cleft palate … that’s fixed,” Dr. Larry Baskin, chief of pediatric urology at the University of California San Francisco, said during a June 12 hearing on the California resolution. “We’re restoring normal anatomy.”
The resolution’s author, state Sen. Scott Wiener (D-San Francisco), dismissed the comparison.
“That’s not a credible argument in terms of an impact on someone’s life,” he told Rewire.News.
Urologists have also seemed to conflate social normalcy with medical necessity.
“Our focus is to make sure that each person becomes a functional member of society,” Baskin said at a May 1 hearing. “In other words, they have a community that they are involved in, and they can be productive, and in California pay taxes, that’s the way I would define that.”
Kyle Knight, co-author of the Human Rights Watch report, said such comments bring to light the pejorative way urologists have talked about intersex people in pay-walled medical journals for decades.
“Is someone doing TurboTax with their clitoris?” Knight said in an interview with Rewire.News. “What is he talking about? But that’s where the discourse has been at—that is where the ‘medicine’ has been at for 20 years. It’s just coming out in public now.”
Dr. Aaron Spitz, immediate past president of the California Urological Association, said during the June 12 hearing that “90 percent” of patients who undergo surgery are girls with what he called a female “brain sex,” who have congenital adrenal hyperplasia (CAH), a group of conditions affecting the adrenal gland that can be life-threatening and may cause genital differences in patients with XX (“female”) chromosomes.
Spitz compared the needs of these patients with those of transgender people.
“We’ve become much more enlightened in allowing people with gender dysphoria to have gender-affirming surgery at younger and younger ages,” Spitz said. “Why would we do the exact opposite with this population of girls?”
But unlike people operated on as infants, transgender youth often must consult with mental health providers and demonstrate that they are firm in their identities and aware of the risks of medical options. Dr. Joshua Safer, executive director of the Mount Sinai Center for Transgender Medicine and Surgery, said the comparison works only in the sense that trans people make a range of decisions about surgery, and intersex people should be able to do the same.
“It is kind of ironic that we are dealing with a reality where transgender individuals are having difficulty getting enough surgery, and intersex individuals are suffering from too much surgery,” Safer said in an interview. “But the theme that we have from both situations is that we are looking for the individual to participate in the decision.”
The Go-To Provider
Dr. Dix Poppas, chief of pediatric urology at NewYork-Presbyterian Hospital-Weill Cornell Medical Center, defends his widely sought-after practice of operating on some kids with genital differences. Like other urologists who support the surgeries, Poppas emphasized that CAH patients with XX chromosomes are not intersex, but “100 percent females in every way.” These patients may be born with a uterus and ovaries as well as an enlarged clitoris, fused labia, and a urethra that is attached to their vagina, which Poppas said can cause urinary issues. Delaying surgery would mean “forcing them to grow up as girls—which we know they are … with genitalia that doesn’t align with their gender,” Poppas said in an interview.
But not all of these patients are women.
Brian Douglas, who has CAH and XX chromosomes, struggled for decades to fit into a gender assignment that was not his, taking feminizing hormones and marrying a man, although the vaginoplasty and clitoral surgery he underwent as a child made sex painful and left him with minimal sensation. He later discovered that his birth certificate bore the name “Brian,” which was erased and typed over with the female-sounding name he lived with for decades.
He has lived publicly as Brian for a few years and feels like he’s starting over at age 52, without the option of affirming his gender through genital surgery.
“If I had so much money that I could choose the best surgeons in the world, maybe I would consider it,” he told Rewire.News. “[With] the nerve damage that has been done, I don’t believe it is possible to recuperate from this.”
Brian is not alone. One study found that one in eight CAH children with XX chromosomes being raised as girls met the criteria for gender dysphoria, and 5 percent “frequently” wished they were boys. Another study found that 1.6 percent transitioned to living as men.
“You cannot ignore the fact that one in eight of these children is not going to feel like a girl, or a woman, eventually,” Dr. Arlene Baratz, a mother of two intersex daughters who works with interACT, told Rewire.News. If those children are operated on as babies, “you have potentially done something catastrophic that cannot be reversed.”
While he defended clitoral reduction surgery on CAH children because he said the vast majority are girls, Dr. Poppas acknowledged the potential harm of performing these surgeries on children with other conditions. In PAIS patients like Pagonis, Poppas said, the surgery they underwent at age 4, “should never be done today,” although he acknowledged it likely is done in some communities without specialized medical centers.
“We do not want to do an irreversible surgery on a patient who has a high probability of gender converting when they’re older,” Poppas said, adding that he has PAIS patients “who are being raised as males, where we have built the phallus for them.”
“That’s OK, because that’s reversible,” Poppas said. “If they decide to gender convert to a female, I can easily do that. But you don’t want to do a [clitoral] reduction surgery on them.”
Poppas also defended operating on patients with XY chromosomes who have a condition called hypospadias, where the urethra is located somewhere other than the tip of the penis—another case where proponents of delaying surgery say it is generally medically unnecessary.
“I’m a strong believer in correcting those boys,” Poppas said. “That boy will not be able to stand up to urinate; he will have to sit down until it’s corrected. He will not be able to have penetrative sexual intercourse because of the downward curvature of the penis. He will look at himself as being abnormal his entire life.”
Poppas came under fire in 2010 for his approach to studying the outcome of a modified technique for reducing the size of a clitoris. While the children’s parents were present, Poppas and his nurse practitioner applied a cotton swab and a vibrating device called a biothesiometer to the children’s inner thigh, labia, vaginal opening, and clitoris to measure their level of sensation.
Poppas said the testing was necessary to prove the operation preserved sexual sensation, but said he has not performed it since before the results were published in 2007. “I cannot envision any reason why I would ever perform testing in these patients is [sic] the future as I now have solid personal experience with these surgeries and their outcomes,” he wrote in a follow-up email.
When Rewire.News said, during the interview, that the technique sounded invasive, Poppas insisted it was not.
“I should have videotaped it so someone could see what we’re doing,” he said. “This is all external. It doesn’t hurt. It’s not painful. The degree of vibration is extremely minor. And again, that was for me to prove to myself that I wasn’t hurting these children.”
“Nothing to Do With Medical Necessity”
Some patients and parents agree with Poppas that surgery at an early age is necessary. The CARES Foundation, where Poppas serves as medical adviser, is a CAH advocacy group that opposes the California resolution, in part because they say CAH patients are not intersex and should not be included. CARES connected Rewire.News with people who were satisfied with these surgeries.
Ann, 61, a CAH patient who was raised in the United Kingdom and asked us to withhold her real name, said she is happy with the outcomes of a vaginoplasty she had at 16, and another surgery that reduced the size of her clitoris at age 4, which she wishes had been done earlier.
“As a little girl, how could I have gone swimming, how could I have been who I was, when if I’d have had a swimsuit on, it would have been quite visible?” Ann told Rewire.News. “And who’s got the right to say that I shouldn’t have that done?”
Colleen Geletko, of Pittsburgh, has two daughters with CAH who both underwent urethroplasties, vaginoplasties, and clitoroplasties as babies. While she did her own research, Geletko was consumed with caring for her children’s illnesses, and ultimately trusted doctors.
“I asked for the end game—that it was medically necessary,” Geletko said. “Even if my daughters disagree with me when they get older now, as long as they know that my intent was positive, and that I thought I was doing the best thing for them, I think that that would appease me.”
Megan, the mother of a 4-year-old CAH patient in Florida who asked us not to use her real name, said she chose to have her daughter undergo a vaginoplasty and clitoroplasty at 11 months old, in part to spare her from the pain of being different in a world that is not always accepting.
“I know from my experience when I was younger, I was teased for being a tomboy… It was very difficult psychologically,” Megan told Rewire.News. “I just didn’t want her to have to go through that kind of stuff, for something that literally just looked like extra flesh.”
Such anxiety about bullying over genitalia is common, but not necessarily supported by data, according to Dr. Safer at Mount Sinai.
“There still is this anxiety that kids are not going to fit in if their genitals are different from other kids,” Safer said. “And the problem is, if we’re going to be evidence-based medical providers, then we really do need to go and look at data, and I think what we find is we have no data that there is any of that sort of bullying that is occurring.”
Some parents of CAH children have chosen a different path.
Days after Rosie Lohman was born at a hospital in London, Ontario in 2012, about 30 specialists convened with her parents in a room to discuss her condition. A social worker recommended Eric and Stephani Lohman conceal Rosie’s intersex traits from their older kids. A urologist presented two options: They could reduce the size of Rosie’s clitoris and create a vaginal opening, or just create the vaginal opening. There was no option that didn’t involve surgery.
Because Rosie could urinate, the Lohmans did not see a medical need to operate. They researched, and found that anesthesia can damage the brains of children under 3. They found reason to doubt the common claim that surgery would reduce Rosie’s risk of urinary tract infections. In medical journals, Stephani encountered references to “nerve-sparing surgeries” that, to her, underscored the risk of nerve damage. She was horrified by the focus in these journals on creating a vagina that could accommodate a penis.
“So that’s great, to think of your child as a future penis receptacle,” Stephani Lohman told Rewire.News. “This has nothing to do with medical necessity, but this has everything to do with the idea that your child is a girl who should grow up to marry a man who she is going to have sex with. Nothing about her pleasure, but everything about the pleasure of a man.”
Rosie, who turns 6 on Tuesday, will be able to participate in the decision about whether to have surgery.
“Rosie is perfect to me,” Stephani Lohman told Rewire.News. “That’s how we all should think about all of our kids, and all of our kids’ bodies, whether they are intersex, gay, lesbian, trans. If we fill the world with support for these kids, they will grow up to be fine.”
Reshaping What’s “Normal”
Some intersex people who waited until adolescence to undergo surgery said they still lacked the social or medical support to make an informed decision.
Saifa Wall, 39, who has PAIS like Pagonis, had his internal testes removed when he was 13 because doctors, who referred to them as “gonads,” said they would develop cancer. Wall’s story shows how a medical provider’s framing can influence parents who are trying to make the best decisions for their children.
Wall said his mom wasn’t given enough information about his condition or the surgery’s implications. After being raised as a girl, Wall now identifies as an intersex person of transgender experience. He injects himself every two weeks with testosterone, replacing hormones his body once produced on its own.
Bria Brown-King, who has CAH, chose to have a vaginoplasty and clitoral reduction at age 13. They regret the surgery, which left them with vaginal pain so severe they cannot endure a gynecological exam. They wish they had researched surgeons, talked with people who had had surgery, and moved past their adolescent insecurity. At age 26, their priorities have shifted.
“Thirteen-year-old me … was just worried about, ‘Am I going to be able to have a normal sex life? Am I going to be able to wear cute little bikinis?’” Brown-King told Rewire.News. “But now 26-year-old me—I don’t care about that stuff. I just want to feel comfortable with my body.”
Brown-King, whose manifestation of CAH has given them broad shoulders and facial hair, in addition to a uterus and breasts, wants to see a wider cultural shift toward acceptance of bodies like theirs. Even as the Trump administration has moved to impose binary assumptions about sex and gender on everything from health care to bathroom access and prison housing, people like Brown-King are calling for a reshaping of these norms.
“I just wish that we could erase all the stigma, just even understanding and teaching children that people are different,” Brown-King told Rewire.News. “There is no such thing as normal.”
Intersex people have begun to ease the stigma by speaking out publicly in increasing numbers. For Tiger Devore, 60, who was born with hypospadias, such progress is gratifying. Devore has had 27 surgeries, starting when he was 3 months old, and now regrets all of the operations, some of which were attempts to repair previous failures: leaking scar tissue, skin grafts that sloughed off, collapsed urethras. More than 30 years ago, Devore appeared on the television show People Are Talking, fielding questions from a young Oprah Winfrey and co-host, Richard Sher, that included, “How fixed are you right now?”
“I was the only voice for a lot of years, and now people around the world know what intersex is,” Devore told Rewire.News.
Like many advocates, Devore would like to see a ban on medically unnecessary surgeries on infants with intersex traits; such a ban failed in his home state of Nevada last year. Some doctors critical of the surgeries have called for medical societies, rather than lawmakers, to take the lead—so far, the response from these groups has been mixed.
Meanwhile, intersex people have taken their fight to the door of the hospital, reviving a history of protest that dates back to 1996, when activists rallied outside the American Academy of Pediatrics conference in Boston with a banner that read “Hermaphrodites with Attitude.” These images inspired and consoled Pagonis after they discovered their medical history.
On July 19, Pagonis returned to the site of their surgeries, the Lurie Children’s Hospital of Chicago. They joined Wall and about 60 other intersex people and supporters, calling on Lurie to become the first U.S. hospital to end medically unnecessary surgeries on intersex children.
The protesters laid diapers stained with red paint on the ground in front of the hospital.
Wall spoke into the bullhorn.
“We have suffered enough,” he said. “Our time is now.”
CORRECTION: This piece has been updated to note the California resolution will need to go to the state senate after the Assembly votes on it.