No right for regrets: What problems do detransitioners face and why their stories are so important for the development of gender medicine

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. But for many researchers, detransitioning and regret have long been untouchable subjects.

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.

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.

Dr Kinnon MacKinnon
Photo: REUTERS/Chris Helgren

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.”

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.

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 Rafferty 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.”

Max Lazzara was initially pleased with her transition, she says, but her mental health continued to deteriorate, and eventually, she no longer believed in her gender identity.

Photo: REUTERS/Matt Mills McKnight

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.”

Dr Laura Edwards-Leeper
Photo: Laura Edwards-Leeper/Handout via REUTERS

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.

Source: Reuters