Why detransitioners are crucial to the science of gender care

by Reuters
Friday, 23 December 2022 09:32 GMT

Max Lazzara, reflected in a puddle, poses for a portrait at Gas Works Park in Seattle, Washington, U.S., December 14, 2022. REUTERS/Matt Mills McKnight

Image Caption and Rights Information
Understanding the reasons some transgender people quit treatment is key to improving it, especially for the rising number of minors seeking to medically transition, experts say

For years, Dr Kinnon MacKinnon, like many people in the transgender community, considered the word “regret” to be taboo.

MacKinnon, a 37-year-old transgender man and assistant professor of social work at York University here, thought it was offensive to talk about people who transitioned, later regretted their decision, and detransitioned. They were too few in number, he figured, and any attention they got reinforced to the public the false impression that transgender people were incapable of making sound decisions about their treatment.

“This doesn’t even really happen,” MacKinnon recalled thinking as he listened to an academic presentation on detransitioners in 2017. “We’re not supposed to be talking about this.”

MacKinnon, whose academic career has focused on sexual and gender minority health, assumed that nearly everyone who detransitioned did so because they lacked family support or couldn’t bear the discrimination and hostility they encountered – nothing to do with their own regret. To learn more about this group for a new study, he started interviewing people.

In the past year, MacKinnon and his team of researchers have talked to 40 detransitioners in the United States, Canada and Europe, many of them having first received gender-affirming medical treatment in their 20s or younger. Their stories have upended his assumptions.

Kinnon MacKinnon, a transgender man and Assistant Professor at York University, poses for a portrait at a symposium about gender detransition at York University in Toronto, Ontario, Canada, November 21, 2022. REUTERS/Chris Helgren

Many have said their gender identity remained fluid well after the start of treatment, and a third of them expressed regret about their decision to transition from the gender they were assigned at birth. Some said they avoided telling their doctors about detransitioning out of embarrassment or shame. Others said their doctors were ill-equipped to help them with the process. Most often, they talked about how transitioning did not address their mental health problems.

In his continuing search for detransitioners, MacKinnon spent hours scrolling through TikTok and sifting through online forums where people shared their experiences and found comfort from each other. These forays opened his eyes to the online abuse detransitioners receive – not just the usual anti-transgender attacks, but members of the transgender community telling them to “shut up” and even sending death threats.

“I can’t think of any other examples where you’re not allowed to speak about your own healthcare experiences if you didn’t have a good outcome,” MacKinnon told Reuters.

The stories he heard convinced him that doctors need to provide detransitioners the same supportive care they give to young people to transition, and that they need to inform their patients, especially minors, that detransitioning can occur because gender identity may change. A few months ago, he decided to organize a symposium to share his findings and new perspective with other researchers, clinicians, and patients and their families.

Not everyone was willing to join the discussion. A Canadian health provider said it couldn’t participate, citing recent threats to hospitals offering youth gender care. An LGBTQ advocacy group refused to promote the event. MacKinnon declined to identify either, telling Reuters he didn’t want to single them out. Later, after he shared his findings on Twitter, a transgender person denounced his work as “transphobia.”

He expected his research would be a hard sell even to many of the 100 or so people from Canada, the United States and elsewhere who accepted his invitation. “I need your help,” he told the crowd that assembled in November in a York University conference room for the daylong session. “My perspectives have changed significantly. But I recognize that for many of you, you may find yourselves feeling much like I did back in 2017 – challenged, apprehensive, maybe fearful.”

Fighting words

In the world of gender-affirming care, as well as in the broader transgender community, few words cause more discomfort and outright anger than “detransition” and “regret.” That’s particularly true among medical practitioners in the United States and other countries who provide treatment to rising numbers of minors seeking to transition.

They insist, as MacKinnon once did, that detransitioning is too rare to warrant much attention, citing their own experiences with patients and extant research to support their view. When someone does detransition, they say, it’s almost never because of regret, but rather, a response to the hardship of living in a society where transphobia still runs rampant.

“These patients are not returning in droves” to detransition, said Dr Marci Bowers, a transgender woman, gender surgeon and president of the World Professional Association for Transgender Health (WPATH), an international group that sets guidelines for transgender care. Patients with regret “are very rare,” she told Reuters. “Highest you’ll find is 1% or 1.5% of any kind of regret.”

Doctors and many transgender people say that focusing on isolated cases of detransitioning and regret endangers hard-won gains for broader recognition of transgender identity and a rapid increase in the availability of gender care that has helped thousands of minors. They argue that as youth gender care has become highly politicized in the United States and other countries, opponents of that care are able to weaponize rare cases of detransition in their efforts to limit or end it altogether, even though major medical groups deem it safe and potentially life-saving.

“Stories with people who have a lot of anger and regret” about transitioning are over-represented in the media, and they don’t reflect “what we are seeing in the clinics,” said Dr Jason Rafferty, a pediatrician and child psychiatrist at Hasbro Children’s Hospital in Providence, Rhode Island. He also helped write the American Academy of Pediatrics’ policy statement in support of gender-affirming care. Detransitioning is a “very invalidating term for a lot of people who are trans and gender-diverse,” Rafferty said.

Some people do detransition, however, and some do so because of regret. The incidence of regret could be as low as clinicians like Bowers say, or it could be much higher. But as Reuters found, hard evidence on long-term outcomes for the rising numbers of people who received gender treatment as minors is very weak.

Dr Laura Edwards-Leeper, a clinical psychologist in Oregon who treats transgender youths and a co-author of WPATH’s new Standards of Care for adolescents and children, said MacKinnon’s work represents some of the most extensive research to date on the reasons for detransitioning and the obstacles patients face. She said the vitriol he has encountered illustrates one reason so few clinicians and researchers are willing to broach the subject.

“People are terrified to do this research,” she said.

For this article, Reuters spoke to 17 people who began medical transition as minors and said they now regretted some or all of their transition. Many said they realized only after transitioning that they were homosexual, or they always knew they were lesbian or gay but felt, as adolescents, that it was safer or more desirable to transition to a gender that made them heterosexual. Others said sexual abuse or assault made them want to leave the gender associated with that trauma. Many also said they had autism or mental health issues such as bipolar disorder that complicated their search for identity as teenagers.

Echoing what MacKinnon has found in his work, nearly all of these young people told Reuters that they wished their doctors or therapists had more fully discussed these complicating factors before allowing them to medically transition.

No large-scale studies have tracked people who received gender care as adolescents to determine how many remained satisfied with their treatment as they aged and how many eventually regretted transitioning. The studies that have been done have yielded a wide range of findings, and even the most rigorous of them have severe limitations. Some focus on people who began treatment as adults, not adolescents. Some follow patients for only a short period of time, while others lose track of a significant number of patients.

“There’s a real need for more long-term studies that track patients for five years or longer,” MacKinnon said. “Many detransitioners talk about feeling good during the first few years of their transition. After that, they may experience regret.”

In October, Dutch researchers reported results of what they billed as the largest study to date of continuation of care among transgender youths. In a review of prescription drug records, they found that 704, or 98%, of 720 adolescents who started on puberty blockers before taking hormones had continued with treatment after four years on average. The researchers couldn’t tell from the records why the 16 had discontinued treatment.

Gender-care professionals and transgender-rights advocates hailed the 98% figure as evidence that regret is rare. However, the authors cautioned that the result may not be replicated elsewhere because the adolescents studied had undergone comprehensive assessments, lasting a year on average, before being recommended for treatment. This slower, methodical approach is uncommon at many U.S. gender clinics, where patient evaluations are typically done much faster and any delay in treatment, or “gatekeeping,” is often believed to put youth at risk of self-harm because of their distress from gender dysphoria.

Dr Marianne van der Loos, the Dutch study’s lead author, is a physician at Amsterdam University Medical Center’s Center for Expertise on Gender Dysphoria, a pioneer in gender care for adolescents. “It’s important to have evidence-based medicine instead of expert opinion or just opinion at all,” van der Loos said.

Reliable evidence of the frequency of detransition and regret is important because, as MacKinnon, van der Loos and other researchers say, it could be used to help ensure that adolescent patients receive the best possible care.

A basic tenet of modern medical science is to examine outcomes, identify potential mistakes, and, when deemed necessary, adjust treatment protocols to improve results for patients. For example, only after large international studies analyzing outcomes for thousands of patients did researchers establish that implanted coronary artery stents were no better than medication for treating most cases of heart disease.

Stronger data on outcomes, including the circumstances that make regret more likely, would also help transgender teens and their parents make better-informed decisions as they weigh the benefits and risks of treatments with potentially irreversible effects.

“We cannot carry on in this field that involves permanently changing young people’s bodies if we don’t fully understand what we’re doing and learn from those we fail,” said Edwards-Leeper, the clinical psychologist and WPATH member. “We need to take responsibility as a medical and mental-health community to see all the outcomes,” she said in an interview.

As Reuters reported in October, thousands of families in the U.S. have been weighing these difficult choices amid soaring numbers of children diagnosed with gender dysphoria, the distress experienced when a person’s gender identity doesn’t align with their gender assigned at birth. They have had to do so based on scant scientific evidence of the long-term safety and efficacy of gender-affirming treatment for minors.

Concern about how to cope with the growing waiting lists at gender clinics that treat minors has divided experts. Some urge caution to ensure that only adolescents deemed well-suited to treatment after thorough evaluation receive it. Others argue that any delay in treatment prolongs a child’s distress and puts them at risk of self-harm.

Detransition defined

Detransitioning can mean many things. For those who transitioned socially, it may entail another change in name, preferred pronouns, and dress and other forms of identity expression. For those who also received medical treatment, detransitioning typically includes halting the hormone therapy they otherwise would receive for years.

Nor do all people who stop treatment regret transitioning, according to interviews with detransitioners, doctors and researchers. Some end hormone therapy when they have achieved physical changes with which they are comfortable. Some are unhappy with the side effects of hormones, such as male pattern baldness, acne or weight gain. And some are unable to cope with the longstanding social stigma and discrimination of being transgender.

Doctors and detransitioners also described the challenging physical and emotional consequences of the process. For example, patients who had their ovaries or testes removed no longer produce the hormones that match their gender assigned at birth, risking bone-density loss and other effects unless they take those hormones the rest of their lives. Some may undergo years of painful and expensive procedures to undo changes to their bodies caused by the hormones they took to transition. Those who had mastectomies may later undergo breast reconstruction surgery. As parents, they may regret losing the ability to lactate. Detransitioners also may need counseling to cope with the process and any lingering regret.

The impact can be social, too. In a study published last year in the Journal of Homosexuality, a researcher in Germany surveyed 237 people who had socially or medically transitioned and later detransitioned, half of them having transitioned as minors. Many respondents reported a loss of support from the LGBTQ community and friends, negative experiences with medical professionals, difficulty in finding a therapist familiar with detransition and the overall isolation after detransition.

“Many respondents described experiences of outright rejection from LGBT+ spaces due to their decision to detransition,” wrote Elie Vandenbussche, the study’s author, a detransitioner and at the time a student at Rhine-Waal University of Applied Sciences. “It seems reasonable to suspect that this loss of support experienced by detransitioners must have serious implications on their psychological well-being.”

In its new Standards of Care, released in September, WPATH cited Vandenbussche’s paper and a few others on detransitioning and continuation of care among younger patients. “Some adolescents may regret the steps they have taken,” the WPATH guidelines say. “Therefore, it is important to present the full range of possible outcomes when assisting transgender adolescents.”

However, Bowers, WPATH’s president, is among several gender-care specialists who say patients are ultimately responsible for choices they make about treatment, even as minors. They should not be “blaming the clinician or the people who helped guide them,” she said. “They need to own that final step.”

WPATH’s guidelines acknowledge the lack of research on long-term outcomes for youth who didn’t undergo comprehensive assessments, saying that the “emerging evidence base indicates a general improvement in the lives of transgender adolescents” who receive treatment after careful evaluation. “Further, rates of reported regret during the study monitoring periods are low,” the guidelines say.

Specific treatment protocols for detransitioning are hard to find. WPATH’s guidelines don’t provide detailed advice to clinicians on treating patients who detransition. The Endocrine Society’s guidelines for gender-affirming care, published in 2017, don’t address the issue, either. The “question of discontinuing hormone treatment is beyond the scope covered by the current guideline,” an Endocrine Society spokeswoman said.

Some doctors think they – and patients – would benefit from more guidance. “We have guidelines to guide us in providing transition-related care, initiating hormones and managing them long-term. Equally as important would be having guidelines in deprescribing hormones in the safest way possible,” said Dr Mari-Lynne Sinnott, a doctor who attended MacKinnon’s symposium. She runs one of the only family medical practices in Newfoundland focused on gender-diverse people, who make up about half of her 1,500 patients.

“Sure of my identity”

Max Lazzara’s childhood in Minneapolis, Minnesota, was chaotic, with divorce, “moving around a lot, some emotionally abusive stuff at home,” she said. Her mother worked full-time, so Lazzara did most of the cooking, cleaning and caring for her little brother. She began to cut and burn herself as a means of coping and had tried to commit suicide three times before she entered high school, according to Lazzara and her medical records, which cite a history of bipolar disorder.

“The life of a woman was bleak to me,” Lazzara told Reuters. “I worried that I would have to get married to a man someday and have a baby. I wanted to run far away from that.”

In early 2011, when Lazzara was 14, she started questioning her gender identity. After discovering forums on Tumblr where young people described their transitions, she felt like something snapped into place. “I thought, ‘Wow, this could explain why my whole life felt wrong.’”

During the summer of that year, Lazzara changed her name and began experimenting with presenting as more masculine. It felt good to cut her hair and wear gender-neutral or men’s clothing. She took medications and received therapy to treat bipolar disorder. But it wasn’t enough to alleviate her distress. In April 2012, Lazzara was admitted to the hospital at the University of Minnesota after a fourth suicide attempt.

Three weeks later, she sought care at the university’s Center for Sexual Health, where she was diagnosed with gender identity disorder. Lazzara told the clinic she was “sure of my identity,” according to her medical records. She wanted hormones and surgeries, the records show, including a mastectomy, a hysterectomy, and liposuction to slim her legs and hips. She was horrified at her body, could not look down in the shower and felt “absolute dread at the time of menstrual cycle,” the records note.

“I felt so strongly. I thought nothing would change my mind,” Lazzara told Reuters.

Clinicians at the university warned families that their children were suicidal “because they are born in the wrong bodies,” Lazzara’s mother, Lisa Lind, told Reuters. “I thought, ‘I’ll do whatever it takes, so she doesn’t kill herself.’”

Max Lazzara poses for a portrait at Gas Works Park in Seattle, Washington, U.S., December 14, 2022. REUTERS/Matt Mills McKnight

Lazzara started taking testosterone in the fall of 2012, at age 16. She was still binding her breasts – so tightly, she said, that her ribs deformed. After a man groped her on the street, she decided to have breast-removal surgery, tapping the college fund her grandmother had left for her to cover the nearly $10,000 cost.

Initially, Lazzara was happy with her transition. She liked the changes from taking testosterone – the redistribution of fat away from her hips, the lower voice, the facial hair – and she was spared the sexist cat-calling that her female friends endured. “I felt like I was growing into something I wanted to be,” Lazzara said.

But her mental health continued to deteriorate. She attempted suicide twice more, at ages 17 and 20, landing in the hospital both times. Her depression worsened after a friend sexually abused her. She became dependent on prescription anti-anxiety medication and developed a severe eating disorder.

During the summer of 2020, Lazzara was spiraling. She realized she no longer believed in her gender identity, but “I didn’t see a way forward.”

That October, Lazzara was working as a janitor in an office building in the Seattle area when she caught her reflection in a bathroom mirror. For the first time, she said, she saw herself as a woman. “I had not allowed myself to have that thought before,” she said. It was shocking but also clarifying, she said, and “a peaceful feeling came over me.”

Then she began to ponder her sexuality. In middle school, she had crushes on girls. After her transition, she identified as a transgender man who was bisexual. Now, she realized, she was a lesbian.

Lazzara stopped taking testosterone. She later asked her doctor in the Seattle area for advice, but he seemed unsure about how to proceed. She found a new doctor and recently sought laser hair removal on her face.

Lazzara told Reuters she now realizes that gender treatment was not appropriate for her and that it took a toll on her physical and mental health. “I do wish my doctors had said to me, ‘It’s OK to feel disconnected from your body. It’s OK to like girls. It’s OK to be gender non-conforming.’”

Her original gender-care providers at the University of Minnesota declined to comment. In a statement, the university’s medical school said “gender-affirming care involves a carefully thought-out care plan between a patient and their multidisciplinary team of providers.”

Lazzara recently found the before-and-after pictures of her torso on the website of the surgeon who performed her mastectomy in 2013. She had given him permission to post the images because he was proud of the outcome. Seeing her body as it once was stunned her. “I saw my breasts before I got them removed. That’s my 16-year-old body,” she said. “I had no ability at that age to be in my own body in my own way.”

Since revealing she detransitioned, Lazzara said, many in the online transgender community who embraced her a decade ago have distanced themselves from her, and she has received hateful messages on social media. Now, when she sees someone come out online as detransitioned, she sends them a private message of support. “I know how lonely and alienating it can be,” she said.

“Shut up,” detransitioner

Transgender people are frequently subjected to harassment, abuse and threats online. And as Lazzara’s experience shows, so are detransitioners. In recent posts on TikTok, users took turns telling detransitioners to “shut up,” and mocked, attacked and blamed them for perpetuating harm on the transgender community.

Diana Salameh, a transgender woman, film director and comedian from Mississippi, posted a TikTok video on Oct. 1 to “all the so-called transgender detransitioners out there.” Detransitioners “are just giving fuel to the fire to the people who think that no trans person should exist,” she said in the video. “You people who jumped the gun, made wrong decisions that you should actually feel embarrassed for, but you want to blame somebody else.” In closing, she said, “I think you all need to sit down and shut the fuck up!”

Salameh told Reuters she posted the video because detransitioners spread the false idea “that nobody can be happy after transition,” and right-wing opponents of youth gender care are using their stories “to fuel their agendas.”

Earlier this year, K.C. Miller, a 22-year-old in Pennsylvania who was assigned female at birth, began wrestling with how she felt about her medical transition.

Miller initially sought treatment for gender dysphoria when she was 16 from the adolescent gender clinic at Children’s Hospital of Philadelphia. In September 2017, Miller met with Dr Linda Hawkins, a counselor and co-founder of the hospital’s gender clinic, for the first of two 90-minute visits. During that session, Miller told Hawkins she had wanted to be a Boy Scout as a kid and “always felt like a tomboy,” according to Hawkins’ notes in Miller’s medical records, reviewed by Reuters. Miller also told Reuters that as a young girl she was attracted to other girls, but didn’t feel she could pursue those relationships because her family’s church didn’t accept homosexuality.

Miller’s case had further complications. Hawkins noted that Miller had an extensive history of sexual abuse by a family member starting at age 4, and that as a result, Miller had already been diagnosed with anxiety and post-traumatic stress disorder. Miller had been admitted to a psychiatric hospital for 10 days because of suicidal thoughts in late 2016.

While in the hospital, Miller told her mother she wished she wasn’t a girl “because then the abuse would not have happened,” Hawkins wrote. Elsewhere in the records, Hawkins noted that “Mom expresses concern that the desire to be male and not female may be a trauma response.”

Miller, her mother and Hawkins met again seven weeks later. Miller had continued to have suicidal thoughts. She had taken medication for depression and anxiety and was working with a therapist, Hawkins noted. By the end of that second visit, Hawkins concluded that, “in spite of” Miller’s trauma from abuse, the 16-year-old “has been insistent, persistent and consistent” in thinking of herself as male.

Hawkins referred Miller to a local gender clinic to receive testosterone. Miller got a mastectomy about six months later.

But medical treatment didn’t offer the relief she sought. Her body started to change due to the hormones, yet Miller didn’t feel better. Instead, she cycled through bouts of depression. She passed as a young man, but “something felt off. It felt like I was putting on an act.”

Then Miller began reading the stories posted online by young detransitioners. Parts of their experiences resonated with her. “I absolutely would not have done this if I could go back and do it again,” Miller told Reuters. “I would have worked through therapy and would be living my life as a lesbian.”

Miller said Hawkins should have done a more thorough evaluation of all of Miller’s mental health issues and shouldn’t have recommended treatment so quickly.

Her mother, who asked not to be identified to protect her privacy, told Reuters that providers assured her that Miller’s distress was related to her gender identity and that gender-affirming care would reduce the risk of suicide.

A spokesman for Children’s Hospital of Philadelphia declined to comment, citing patient privacy.

Sitting in her car in early October, Miller let out years of frustration in a video posted on Twitter. She told viewers she felt she looked too masculine to detransition. She described how testosterone thinned her hair. “I don’t see me personally being able to come back from what’s happened,” she said in the video.

The video went viral, registering nearly four million views within days and igniting an avalanche of comments. Two days after Miller’s post, Alejandra Caraballo, a transgender woman, LGBTQ-rights advocate and clinical instructor at Harvard Law School’s Cyberlaw Clinic, wrote on Twitter: “The detransition grift where you complain about transitioning not making you look like a greek god but you also aren’t actually detransitioning yet because you don’t feel like your birth gender and you follow a bunch of anti-trans reactionaries that want all trans people gone.”

Caraballo told Reuters she reacted to Miller’s video because those types of detransition stories are “outlier examples being used by many on the anti-trans side to undermine access to gender-affirming care. They aren’t representative of detransitioners on the whole.”

In other posts and direct messages, some transgender people Miller had once idolized made fun of her appearance and criticized her decisions. One person made a death threat.

A few weeks later, Miller said she stopped taking testosterone, began to feel suicidal and sought psychiatric care. She uses female pronouns among friends, but still presents as a man in public.

In its Standards of Care, WPATH says many detransitioners “expressed difficulties finding help during their detransition process and reported their detransition was an isolating experience during which they did not receive either sufficient or appropriate support.”

In May, Dr Jamison Green, a transgender man, author and former president of WPATH, said he was encouraged when about 30 medical professionals attended an online WPATH seminar he and other gender-care specialists helped lead. The session was intended to help providers better serve detransitioners and other patients with an evolving gender identity.

“I wish people in the transgender community would be less judgmental about people who change their mind,” Green said. “Transgender people, especially when they are newer to the community, can be really brutal to people for not conforming. I really think it’s harmful for everybody.”

Word search pitfalls

Ever since the first clinic to offer gender care to minors in the United States opened in Boston 15 years ago, none of the leading providers have published any systematic, long-term studies tracking outcomes for all patients.

In 2015, the National Institutes of Health funded a study to examine outcomes for about 400 transgender youth treated at four U.S. children’s hospitals, including the gender clinic at Boston Children’s Hospital. Researchers have said they are looking at “continuation of care.” However, long-term results are years away.

That has left a small assortment of studies to guide clinicians in this emerging field of medicine. The results of these studies suggest a wide range of possibilities for rates of detransitioning, from less than 1% to 25%. The research provides even less certainty about the incidence of regret among patients who received medical treatment as minors. And the studies have serious drawbacks.

Two of the largest ones, which found that 2% or less of people who transitioned experienced regret, focused on Europeans who primarily initiated treatment as adults. Experts caution that the results, because of the differences in maturity and life experiences between adults and adolescents, may have limited relevance as an indicator of outcomes for minors.

Researchers acknowledge that studies that follow patients for only a short time may underestimate detransition and regret because evidence indicates some people may not reach that point until as long as a decade after treatment began. Some studies also lose track of patients – a recurring challenge as minors age out of pediatric clinics and have to seek care elsewhere.

Even the choice of search terms can trip up researchers, as apparently happened in a study published in May by Kaiser Permanente, a large integrated health system based in Oakland, California.

That study examined 209 patients who underwent gender-affirming mastectomies as minors between 2013 and 2020 in Kaiser’s northern California region. Its authors searched the patients’ medical records for words such as “regret,” “dissatisfaction,” “unsatisfied” and “unhappy” as indicators of regret. They didn’t look for the term “detransition,” according to the study.

Their search yielded two patients who had expressed regret, or less than 1% of the group studied. The two patients, identified as nonbinary, had top surgery at age 16, and expressed regret within a year and a half.

Reuters found two other patients in the region covered by the study who don’t match those characteristics and whom the Kaiser researchers apparently missed. Both have been outspoken about their detransitions.

One is Max Robinson, who was 16 when she sought gender care at Kaiser in 2012. Her pediatric endocrinologist prescribed a puberty blocker and later testosterone.

The doctor monitored Robinson’s hormone levels, wrote numerous letters to help Robinson change her legal gender from female to male, and recommended a plastic surgeon in San Francisco, Robinson’s medical records show. “I have no reservations recommending Max as a well adjusted candidate for breast reduction,” the Kaiser endocrinologist wrote to the surgeon in May 2013. Max had the surgery six weeks later, when she was 17.

After the surgery, Robinson felt better. But within a year, her mental health issues, including anxiety and depression, had escalated, medical records show.

In November 2015, three years after starting testosterone and two years after her surgery, Robinson told the Kaiser physician she was now seeing that she wasn’t interested in taking hormones any longer. “I’m no longer going to be using testosterone, so I don’t need further appointments or for those prescriptions to be active,” she wrote to the doctor. Two months later, she asked Kaiser to provide a letter confirming her detransition so she could change her legal records back to female. Kaiser obliged.

Max Robinson poses with her dog, Chloe Elizabeth, in Eugene, Oregon, U.S. in this handout photo taken November 2022. Max Robinson/Handout via REUTERS

“The whole experience alienated me from my doctors,” she told Reuters.

Robinson began to speak publicly about her decision to detransition and in 2021 published “Detransition: Beyond Before and After,” a book in which she details her own process of medical transition and detransition.

The other patient was Chloe Cole. According to a letter of intent to sue that her lawyers sent to Kaiser in November, Cole was 13 when a Kaiser doctor in 2018 put her on a puberty blocker, followed a few weeks later by testosterone, for her gender-affirming treatment.

At 15, Cole told Reuters, she also wanted top surgery. In an interview, she and her father said the doctors at Kaiser readily agreed, though he wanted to wait until she was older.

“They were so adamant,” he said. He recalled the doctors telling him: “‘At this age, they definitely know what their gender is.’” The father asked not to be named out of concern that speaking publicly might jeopardize his employment. Detransition, he said, “wasn’t really discussed as a possibility.”

In June 2020, a Kaiser surgeon performed a mastectomy on Cole, according to the letter of intent to sue. That was a month before her 16th birthday. Less than a year later, Cole said, she began to realize she regretted her surgery and medically transitioning in general after a discussion in school about breastfeeding and pregnancy.

Cole said that when she discussed her decision to detransition with her gender-care specialist at Kaiser, “I could tell that I made her upset that I was so regretful,” Cole said in an interview. Eventually, the doctor offered to recommend a surgeon for breast reconstruction, Cole said, “but that’s something I’ve decided to not go through with.”

Cole has begun speaking out publicly in support of measures to end gender-affirming care for minors, appearing often on conservative media and with politicians who back such bans.

In the letter of intent, Cole’s lawyers said Kaiser’s treatment “represents gross negligence and an egregious breach of the standard of care.”

Steve Shivinsky, a spokesman for Kaiser Permanente, declined to comment on the care provided to Cole and Robinson or whether they were included in the study, citing patient privacy.

In a statement, he said Kaiser’s “clinicians are deeply interested in the outcomes of the care we provide and the individual’s state of health and wellbeing before, during and beyond their gender transition.” For adolescents seeking gender-affirming care, he said, “the decision always rests with the patient and their parents and, in every case, we respect the patients’ and their families’ informed decision to choose one form of care over another.”

The Kaiser researchers followed up with patients in their study an average of 2.1 years after surgery. “The time to develop postoperative regret and/or dissatisfaction remains unknown and may be difficult to discern given that regret is quite rare,” the researchers wrote.

A change of perspective

MacKinnon, the assistant professor of social work, grew up as what he calls “a gender-nonconforming tomboy” in a small Nova Scotia town. After getting his degree in social work, he medically transitioned at 24 when he started taking testosterone. “It was a very slow build,” MacKinnon said of his transition. He didn’t identify as transgender as a child.

As a young researcher in Toronto, MacKinnon was drawn to work that exposed the barriers transgender people face in getting medical care and navigating daily life, interviewing clinicians and patients about their experiences. More recently, he turned his attention to detransition and regret.

In August 2021, MacKinnon published a paper in which he and his co-authors wrote that there was “scant evidence that detransition is a negative phenomenon” for patients that would justify limiting access to gender-affirming treatment. That conclusion angered many of the detransitioners he would later need to win over.

Michelle Alleva, a 34-year-old detransitioner in Canada, criticized MacKinnon’s study in a blog post as another effort by gender-care supporters to whitewash the pain of regret and assuage clinicians’ fears of malpractice lawsuits. Another detransitioner complained on Twitter that the word “regret” was put in quotes in the paper, undermining its legitimacy in her opinion.

Still skeptical that regret was a significant issue, MacKinnon in the autumn of 2021 embarked on his latest study and began talking to more people about their decisions to detransition. In July, he published a paper based on formal interviews with 28 of the more than 200 detransitioners he and his colleagues have found.

A third expressed either strong or partial regret about their transition. Some said their transitions should have proceeded more slowly, with more therapy. Others expressed regret about the lasting impact on their bodies. Some said their mental health needs weren’t adequately addressed before transitioning. “They felt like their consent wasn’t informed because they didn’t initially understand what was going on that might have explained their feelings and suffering,” MacKinnon told Reuters.

The patients’ stories brought MacKinnon round to the view that the gender-care community needs to address regret, adjust treatment to reduce its incidence, and provide better support for detransitioners. “Some of what I’ve learned about detransitioners is identifying cracks in the gender-affirming care system, particularly for young people,” he said.

In September, MacKinnon presented his findings to a small but attentive crowd at WPATH’s annual conference in Montreal. A few weeks later, he shared his research more widely on Twitter. “We need to listen to and learn from the experiences of detransitioners, not silence them,” he wrote.

Some people applauded his work. Others criticized it. Robyn D., who identified as “quietly trans,” replied on Twitter: “Transphobia disguised as academic opinion is the most poisonous of them all.” She didn’t respond to requests for comment from Reuters.

At his November symposium, MacKinnon didn’t encounter the blowback from clinicians that he had expected. In fact, he accepted an invitation from one to speak about detransition at her medical practice.

Alleva, who had criticized MacKinnon’s earlier study, was also there, one of the scores of detransitioners MacKinnon and his colleagues have talked to. She medically transitioned 12 years ago and then detransitioned in 2020 after a mastectomy, a hysterectomy and years of testosterone. She had refused to participate in his research because she didn’t trust MacKinnon, but over the summer, they began talking.

“He reminded me of my old trans friends who I don’t speak with anymore,” Alleva said. “He actually listened to me.”

Themes