The Matrix Reconsidered

Risk, regret and detransition in gender medicine

Much of the debate around medical gender transition turns on the issues of regret and detransition. The court case brought by detransitioner Keira Bell kick-started the political debate that led to the closure of the Gender Identity Development Service at the Tavistock Clinic in the United Kingdom. In the United States detransitioners like Chloe Cole make regular appearances at hearings on bills to ban medical transition of minors.

The first response  of transgender activists has been to claim the regret and detransition are too rare to bother about. That claim is becoming harder to maintain as more and more detransitioners come forward. The current tactic is to minimize the harm caused to detransitioners by medical transition. In order to understand the debate, it is helpful to look at regret in a systematic way with some of the basic techniques of risk analysis used in medicine and any other field that involves risk.

The Risk Matrix

Risk analysis generally starts with the creation of a risk matrix which compares the severity of consequences with the likelihood that they will occur. It illustrates the common sense principle that risk managers should be concerned about catastrophic risks even if they are rare but should be equally concerned about risks with minor consequences which occur frequently.

Both the assessment of severity  consequences and likelihood of occurrence are subjective and will vary from case to case. For example, in a medical context, consequences that can be dealt with in an office visit would be considered negligible. Minor consequences would require outpatient admission or multiple office treatments but leave no lasting effects. Moderate consequences might require hospital admission or corrective surgery and leave some permanent effects. Major consequences would involve multiple surgeries and permanent disabilities while catastrophic consequences would be death or total disability.

On the likelihood scale, a rare outcome is something that is theoretically possible but only happens in exceptional circumstances. This would be something that most professionals may not encounter in their entire career. An very likely risk is something that will happen on a regular basis. The actual probability figures will vary but this article gives a typical example:

·       Rare - less than 0.1%  < 1/1000

·       Unlikely 0.1% to 1% > 1/1000

·       Possible 1% - 5% >1/100

·       Likely > 1/20 5.1% to 10%

·       Very likely >1/10 > 10%

Actual clinical decision making is multidimensional as it needs to factor in the expected benefits of the procedure and the risks of alternative treatments or doing nothing. For example, a surgery that falls in the extreme category on the risk matrix might still be worth doing if the only alternative were certain death.

Risk and Regret

One of the problems with applying a risk matrix to gender medicine is that consequences which would be considered major or catastrophic risks in ordinary medicine, such as loss of fertility or the capacity to breastfeed, are expected or even desired consequences of gender affirming care. There are, of course, many consequences such as death as a result of surgery or early onset osteoporosis which are objectively major or catastrophic risks. However, for many treatment outcomes the question or whether they should be treated as a risk of harm depends on the subjective feelings of the patient.

Regret and transition are often treated as equivalent, but they should be viewed as separate but overlapping phenomena. Detransition, the decision to abandon a transgender identity, is usually, but not always, accompanied by regret. Lisa Littman’s study of detransition found that 79.8% of respondents experienced some regret and 49.5% reported strong regret while 11% of respondents were glad they transitioned and 34% agreed with the statement that transition “was a necessary part of their journey.”

On the other hand, there are some people who deeply regret their decision to transition and believe that they suffered serious harm, who nevertheless continue to identify as transgender. Often, this is because they feel that the changes to their body would make it too difficult for them to pass as a member of their birth sex.

How Common is Regret and Detransition?

Trans gender activists typically claim that rates of regret and detransition are 2% or less. However, this claim is becoming harder to sustain as more evidence emerges. Although medical transition of children and adolescents has been widely practiced for over 10 years, there are still no good long term follow up studies of outcomes.

There are many studies of gender medicine which show rates of regret of 2% or less but they invariably have one or more limitations that would tend to underestimate regret.

Any study that depends on patients coming back to a gender clinic or surgeon to express regret will almost certainly result in an underestimate. Detransitioners consistently say that they did not go back to the clinic that arranged for their transition. Other studies amplify this problem by looking only for a very specific indicator of regret like a request for reversal surgery or a formal request for a change of name. Studies that actively follow up with patients usually have a very high loss of follow up rate. The follow up period is often too short. Some patients report feeling regret almost immediately after waking up from surgery but in many cases there is a period of euphoria and regret may set in only after 5 years or more. A study with a 1 or 2 year follow up period will catch most patients during their post surgical high. Finally, studies that were done of adults who transitioned only after extensive psychological assessment have little relevance to the current situation where medical transition takes place at much younger ages with minimal assessment.

More recent studies are finding much higher rates of regret and detransition. A study based on a case note review of a clinic in the U.K. National Health system found that 6.9% of patients detransitioned (according to the study criteria) and another 3.4% showed some signs of detransitioning. Another United Kingdom study based on clinical records found 9.8% of patients expressed a desire to detransition. A study of prescription records from the United States Military Healthcare System found that 30% of patients discontinued hormones within a four year period. While discontinuing hormones is not necessarily a sign of regret or detransition, it does suggest that, at least, they did not find the treatment helpful.

Using the rating system described earlier, a regret level of 2% would be in the possible category, a level of 9.8% would be likely and anything over 10% would be in the very likely category.

How Serious is Regret?

The severity of regret depends both on the objective harm suffered and the subjective response of the individual patient. A case of urethral stricture after a phalloplasty which require multiple revision surgeries would be a major consequence to any patient. Other consequences will depend on the individual. A deepened singing voice can be major consequence to someone who is a singer but minor to someone else.

Unfortunately, regret has become a weapon in the polarized political debate over gender medicine. Critics of gender medicine use stories of regret in much the same way that supporters to the affirming model use suicide risk. Detransitioners are encourage to appear before legislative committees and on the media and describe their experiences in catastrophic terms.

There is no doubt that many detransitioners are genuinely angry and hurt. For some of them, venting their feelings in a public forum could be a cathartic experience. But brooding over harm that cannot be undone is not good for one’s mental health.  Nevertheless, harm has been done. The fact that someone has found a way to come to terms with the loss of their breasts or testicles does not mean that they have not suffered serious harm which ought to be avoided in other cases.

Going back to the risk matrix, it is hard to see how any gender affirming practices other than simple social affirmation could be considered low risk. Hormone therapy makes permanent changes to the body and even if these were all classified as minor, a 1% regret rate would result in a moderate risk rating. Surgery results in permanent loss of functioning body parts. Even if this loss was only rated moderate severity, a regret rate of 2% would result in a high-risk rating. A regret rate of 10% or more, which is consistent with some recent evidence, would push the risk for most irreversible treatment into the extreme category.

Regret in Other Fields of Medicine

Transgender activists often respond in discussions of regret by pointing out that other types of surgeries also have significant regret rates. This Tweet from ACLU lawyer and transman Chase Strangio is typical.

The reason you do not see articles in the New York Times talking about the medical scandal of unnecessary knee surgery is because the medical profession is handling it properly.  Doctors regularly conduct long term follow up studies of surgical patients to improve surgical techniques and to refine diagnostic procedures to avoid unnecessary surgery and evaluate non-surgical alternatives. Practice can change as a result.

Since Strangio’s surgery there has been further research on orthopedic knee surgery, including a randomized trial on young adults, which found that early anterior cruciate ligament surgery did not offer significant advantages over rehabilitation followed by delayed surgery if necessary.

This is standard practice in every field of medicine except for gender. Tonsillectomy was once a standard treatment for children with recurrent throat infections but it is now used much less frequently because studies have found that it does not offer significant benefits over watchful waiting.

In gender medicine watchful waiting is now considered a form of conversion therapy and clinicians who recommend it risk professional or even criminal sanctions.

Why is this Happening?

The first Dutch study on puberty suppression for gender dysphoria was published in 2011 and gender affirming care on adolescents has been widely used since at least 2015. There has been time to do prospective longitudinal studies of young transitioners with a follow up period of 5 years or longer. This type of study might help identify the factors that lead to regret and detransition so that clinics can provide alternatives to irreversible physical transition to those patients who are most likely to experience regret.

I have not heard of any such studies being published. There may be some underway but it is questionable whether they will lead to any meaningful change. The reason can be found in any of the recent articles on detransition which quote gender affirming clinicians. While they express concern about the growing rate of detransition and acknowledge the need for better services for detransitioners, they are equally concerned that detransition and regret not be used to limit access to gender affirming care.

In other words, they don’t want to change anything. They will look at ways to provide better support to people who are devastated because doctors convinced them that getting sterilized was the best way to solve their mental health problems but they refuse to consider greater use of exploratory psychotherapy before or instead of medical transition. It’s like offering to provide crash victims with crutches and wheelchairs but refusing to consider whether a lower speed limit or better traffic signals might reduce the number of crashes.

The limited research we have on detransition, as well as many annecdotal accounts, shows that regret and detransition often arise when the sense of gender distress which led to the desire to transition was secondary to other mental health condtiions. A return to more extensive and better psychotherapy prior to medical transition seems like an obvious solution. However, gender clinics in North America reject calls for greater reliance on psychotherapy and cling to the model of rapid transition.

Part of the reason for this attitude may be economic. Medical transition provides substantial incomes to surgeons and drug companies. Talk therapy is labour intensive and less profitable. However, a larger problem is ideological. Gender medicine is dominated by activist clinicians who are committed to a belief in an innate sense of gender identity. They have had to concede that it may be transitory in the face of overwhelming evidence of the existence of detransition, but they still resist the idea that it is interconnected with other mental health conditions. The bodies of detransitioners are the collateral damage in this ideological struggle.