Annalise, a 52-year-old web developer in Southern California, lived the better half of her adult life with a host of medical symptoms that no one could explain: constant low-level pain when using the bathroom, recurring stomachaches that would flare up about once a month, and, at one point, major agonizing swelling in her lower abdomen.
Annalise identifies as a transgender woman. But one day in 2016 when getting a CT scan to look for kidney stones that doctors thought could explain the stomach pain, she learned that she actually had a uterus, which doctors told her had probably been causing most of her symptoms.
“At first I was kind of shocked because I didn’t know intersex was a thing,” Annalise, who is using her first name only for privacy reasons, told Salon in a phone interview. “I’ve thought forever — even without knowing that it was a real thing — that this was the way that I was, but I also pretty much thought I was just crazy for thinking that because it’s not like anyone was talking about it.”
Intersex is an umbrella term that includes people who are born with variations in sexual anatomy, chromosomal patterns, and/or reproductive organs and hormonal patterns that do not fit into traditional binary notions of male and female bodies. Estimated to number about 1.7% of the population, intersex people have always existed, one of the many natural threads in the tapestry of human experience. In some Indigenous cultures, people who embody both male and female spirits have been identifying as “two-spirit” for thousands of years. In Pakistan and Bangladesh, some people identify as Hijra, which means they have both male and female traits.
"Most doctors don’t know anything about intersex."
Yet the medical establishment in nearly all parts of the world has historically seen any variations in sex characteristics as something that needs to be “fixed,” and many intersex people have undergone unnecessary and nonconsensual surgeries at birth as a result that can lead to lifelong pain and side effects. Afterward, many do not receive the care they need to treat these symptoms stemming from nonconsensual operations.
In one 2023 qualitative study of intersex adults, nearly 50% reported not seeking emergency health care and 65% reported delaying preventative health care because they had prior traumatic experiences with doctors.
“Most doctors don’t know anything about intersex, and they don’t know these are all of the various conditions and this is how you diagnose them,” Annalise said. “Only the specialists know that, but you never go to a specialist unless you know what to ask for … And the doctors who don’t know aren’t going to send you there.”
Additionally, many are not told about these surgeries if they were performed, or report being misled to think the surgeries were necessary because they had a risk for cancer. Many intersex people are left to piece together the fact that they are intersex themselves.
Want more health and science stories in your inbox? Subscribe to Salon's weekly newsletter Lab Notes.
Morgana Hoornweg, an ambassador at the NNID foundation in the Netherlands, an organization for sex diversity, also didn’t find out they were intersex until 2018, when they were 56 years old.
“I couldn’t have a relationship because I was always afraid,” Hoornweg told Salon in a phone interview. “I never met anyone with the same condition, and it just wasn’t talked about.”
Although it is typically considered inappropriate for reporters to ask the transgender and intersex communities for details about their surgeries, many in the intersex community feel that at this point it is still necessary to share their experiences to highlight the injustices they have faced.
Years after the discovery of her uterus, Annalise learned she was born with a mix of both XX and XY chromosomes. She learned she had been operated on at birth, and that her parents had not been informed of this decision either, she said.
“I guess the doctors just made decisions on their own of what they were going to do with me when they saw that I was intersex,” Annalise said. “I don't know what my anatomy exactly looked like before the surgery, but it was something that was mixed enough that they decided they had to operate.”
The United Nations has condemned nonconsensual intersex surgeries for more than a decade, as they have been shown to lead to long-term physical problems with fertility, pain, incontinence and the loss of sexual sensation, along with severe psychological consequences. Yet only six countries in the world have fully prohibited these surgeries: Germany, Greece, Iceland, Malta, Portugal and Spain.
We need your help to stay independent
In the U.S., Lurie Children’s Hospital in Chicago, Boston Children’s Hospital, and the New York City Health and Hospitals system are the only hospitals that formally have protective policies in place against these surgeries, said Erika Lorshbough, the executive director of interACT, Advocates for Intersex Youth.
“There are no state laws regulating the practice,” Lorshbough told Salon in a phone interview. “The policy reversals or the adoption of protective policies at Lurie and Boston Children’s were spurred on by local activism.”
Under the Biden administration, the Department of Health and Human Services (HHS) released a first-of-its-kind report highlighting the health inequities faced by the intersex community in what was hailed as a major step forward in recognizing the community’s rights.
But many are concerned that some of this progress could be reversed under the Trump administration, which made it one of its first priorities to attack the trans, nonbinary, and intersex communities by saying the U.S. government will only recognize two sexes. Although many of the executive orders set forth could face legal challenges and may not roll out as intended, his language is still sending a clear message to the community.
“We were moving in the direction of trying to address those health inequities, and if they’re just going to say that they don’t even exist, then you’re just going to perpetuate that,” said Dr. Arlene Baratz, a retired radiologist and advocate for intersex youth.
The U.S. government is no longer issuing identification documents with an “X” identifier, which could impact some intersex individuals, Lorshbough said.
“This can be tricky for people in the intersex community, and particularly young people who were subjected to surgeries to conform their bodies to one sex type or another,” Lorshbough said. ”Because a lot of the time those young people will either have a pubertal development that doesn’t match the sex they were assigned or on their gender journey they will find that their gender identity doesn’t match the sex they were assigned — or both.”
In addition to the executive order declaring two sexes, Trump has also issued executive orders that restrict people with gender dysphoria from serving in the military and restrict access to gender-affirming care for people under 19. These policies avoid directly naming the intersex community, but are obviously targeted to restrict the rights of gender and sexual minorities and can have a chilling effect.
In some cases, hospitals have already elected to stop gender-affirming care before they were officially ordered to. Although hormonal therapy is not considered gender-affirming care for intersex people because it can be issued without consent, these bans have been shown to make pediatric endocrinologists and other specialists that work with intersex patients leave the states in which they practice due to the threat of facing litigation for providing hormone therapies.
“There was really no federal acknowledgement of the existence of intersex people prior to the Biden administration, so it wasn’t something the first Trump administration had to tangle with,” Lorshbough said. “Now, they’re coming at intersex rights obliquely, through their attacks on the rights of transgender people and particularly transgender youth.”
Trump's actions taken to restrict diversity, equity and inclusion (DEI) initiatives can also impact the intersex community. Transgender, intersex and nonbinary communities are vastly understudied, and the Trump administration's order to stop federal research funding and DEI initiatives could make it harder for researchers to conduct studies about these communities. As of this writing, an error page shows up when trying to access the National Institute of Health’s Sexual & Gender Minority Research Office.
“I think this could be really an issue if they’re doing a line-item veto of research funding and there is a big pot of money for sexual and gender minorities,” Baratz told Salon in a phone interview . “If you’re going to go through and say there is not going to be any more of this type of research, that is going to be very hurtful.”
Twenty-six states have passed bans on gender-affirming care for transgender youth despite its clear benefits. The majority of bills banning gender-affirming care have intersex exemptions, which may allow doctors to perform surgeries or treat them with hormones in order to assign them the male or female sex.
“While the narrative is really about trans people not being able to access care they do want, the same laws operate to continue to require intersex people to get care they don’t consent to,” said Elana Redfield, federal policy director of the UCLA School of Law Williams Institute.
Annalise, in Southern California, still has not been able to find a specialist within her insurance network who can help her treat some of the symptoms that the nonconsensual surgery left her with. Her primary care provider advocates for her and does the best they can to connect her to treatment, but she has largely been left to her own devices to investigate some of her symptoms to try and find answers.
The swelling that occurred in her lower abdomen, she says, was likely an ectopic pregnancy, in which a fertilized egg implants and grows outside of the uterus. This was before she had discovered she had a uterus, and a month's worth of tests didn't turn up any answers. Eventually, tissue expelled itself from her body in an agonizing process, she said.
“At the time, nobody could figure out what it was,” she said. “It was just like nobody knew, or they didn’t want to tell me.”
The Biden administration’s first-of-its kind report on health disparities of the intersex community recommended survey questions that can be implemented to better understand the needs of the community. It also advocated for the intersex community to be included in nondiscriminatory practices in hospitals, address insurance coverage and medical record challenges that prevent intersex people from getting the care they need, and develop a federal research agenda for the intersex community.
It’s unclear how or if these needs will be addressed by the Trump administration, but the advocacy within the intersex community has shown no signs of slowing despite the changing tides of political leadership.
“Now, I think it's so much more important to share my experience,” Annalise said. “I know if other people had been talking about it while I was growing up, I would know more about it. I would have been able to get my answers much sooner.”
Shares