Amsterdam Clinic Reports Under 1% Regret After Gonadectomy — But 36% Were Lost to Follow-Up and Regret Took ~11 Years

The Amsterdam Cohort of Gender Dysphoria Study (1972–2015): Trends in Prevalence, Treatment, and Regrets

Cohort & registry studies Detransition & regret Rising diagnoses & social influence

Authors: Chantal M. Wiepjes, Nienke M. Nota, Christel J. M. de Blok, Maartje Klaver, Annelou L. C. de Vries, S. Annelijn Wensing-Kruger, Renate T. de Jongh, Mark-Bram Bouman, Thomas D. Steensma, Peggy T. Cohen-Kettenis, Louis J. G. Gooren, Baudewijntje P. C. Kreukels, Martin den Heijer
Journal: The Journal of Sexual Medicine
Year: 2018
Source: https://doi.org/10.1016/j.jsxm.2018.01.016

Summary

This study reviewed the records of everyone seen at the main Dutch gender clinic in Amsterdam from 1972 to 2015, nearly 6,800 people. Referrals rose about 20-fold, and a smaller share of adults went on to hormones. Among those who had their ovaries or testes removed, the clinic found regret in 0.6% of trans women and 0.3% of trans men. The study is widely cited as showing very low regret. But regret was counted only when someone came back to the clinic and started hormones of their birth sex. About a third of patients stopped coming to the clinic. Regret took about 11 years on average to appear, and almost all cases were people who began treatment before 1998. The authors themselves say their figure may be too low. The low rate is best read as a minimum count of reversals recorded by the clinic.

Key findings

6,793 people (4,432 born male, 2,361 born female) attended the Amsterdam clinic from 1972 to 2015, and assessments per year rose 20-fold, from 34 in 1980 to 686 in 2015.
The share of adults starting hormones within 5 years of their first visit fell from almost 90% (1980) to 65% (2010).
Among adults on hormones for at least a year and a half, 76% of trans women and 82% of trans men had their testes or ovaries removed.
Regret, counted as starting hormones of one's birth sex after this surgery, was found in 0.6% of trans women and 0.3% of trans men, 14 people in total.
Regret was expressed between about 4 and 22 years after starting hormones, on average about 11 years.
13 of the 14 people with regret had started hormones between 1978 and 1997; the authors note recent patients may not have been followed long enough to show regret.
Reasons were sorted as "social regret", "true regret" (for example believing transition would solve issues such as homosexuality) or feeling nonbinary.
The authors report that 36% of patients stopped coming to the clinic after several years of treatment.

Abstract

BACKGROUND: Over the past decade, the number of people referred to gender identity clinics has rapidly increased. This raises several questions, especially concerning the frequency of performing gender-affirming treatments with irreversible effects and regret from such interventions.

AIM: To study the current prevalence of gender dysphoria, how frequently gender-affirming treatments are performed, and the number of people experiencing regret of this treatment.

METHODS: The medical files of all people who attended our gender identity clinic from 1972 to 2015 were reviewed retrospectively.

OUTCOMES: The number of (and change in) people who applied for transgender health care, the percentage of people starting with gender-affirming hormonal treatment (HT), the estimated prevalence of transgender people receiving gender-affirming treatment, the percentage of people who underwent gonadectomy, and the percentage of people who regretted gonadectomy, specified separately for each year.

RESULTS: 6,793 people (4,432 birth-assigned male, 2,361 birth-assigned female) visited our gender identity clinic from 1972 through 2015. The number of people assessed per year increased 20-fold from 34 in 1980 to 686 in 2015. The estimated prevalence in the Netherlands in 2015 was 1:3,800 for men (transwomen) and 1:5,200 for women (transmen). The percentage of people who started HT within 5 years after the 1st visit decreased over time, with almost 90% in 1980 to 65% in 2010. The percentage of people who underwent gonadectomy within 5 years after starting HT remained stable over time (74.7% of transwomen and 83.8% of transmen). Only 0.6% of transwomen and 0.3% of transmen who underwent gonadectomy were identified as experiencing regret.

CLINICAL IMPLICATIONS: Because the transgender population is growing, a larger availability of transgender health care is needed. Other health care providers should familiarize themselves with transgender health care, because HT can influence diseases and interact with medication. Because not all people apply for the classic treatment approach, special attention should be given to those who choose less common forms of treatment.

STRENGTHS AND LIMITATIONS: This study was performed in the largest Dutch gender identity clinic, which treats more than 95% of the transgender population in the Netherlands. Because of the retrospective design, some data could be missing.

CONCLUSION: The number of people with gender identity issues seeking professional help increased dramatically in recent decades. The percentage of people who regretted gonadectomy remained small and did not show a tendency to increase. Wiepjes CM, Nota NM, de Blok CJM, et al. The Amsterdam Cohort of Gender Dysphoria Study (1972-2015): Trends in Prevalence, Treatment, and Regrets. J Sex Med 2018;15:582-590.

Conclusion

The number of people with gender identity issues seeking professional help increased dramatically in recent decades. The percentage of people who regretted gonadectomy remained small and did not show a tendency to increase. (Discussion: the authors add that their findings could underestimate regret because some people might seek reversal elsewhere or experience regret without pursuing reversal, and that with an average time to regret of 130 months it may be too early to examine regret in people who started hormones in the past 10 years.)

Methodological limitations

Narrow definition of regret: Only people who had their ovaries or testes removed and then started hormones of their birth sex were counted. People who regretted hormones, breast removal or other surgery, who stopped treatment without restarting birth-sex hormones, or who regretted in silence were not counted.
Only counted after one surgery: The regret figure covers only people who had their ovaries or testes removed, leaving out the many who had hormones (and, for trans men, breast removal) without this surgery.
Many lost track of: The authors say 36% of patients stopped coming to the clinic after several years of treatment, so regret, reversal treatment elsewhere or death in this group would be missed.
Regret takes years, follow-up was short: Regret appeared on average about 11 years (range about 4 to 22) after starting hormones, while the typical follow-up was about 6 years and most patients were treated after 2005. Recent patients had not been followed long enough to show regret.
Relies on clinic records: Cases were found only if written in this clinic's files. People who detransitioned elsewhere or told no one are invisible, and the authors admit regret "may be hidden from others".
Looking back through records: Some data, such as surgery at other hospitals and older records, were incomplete, and electronic records started at different dates (diagnoses 1985, prescriptions 2000, surgeries 2006).
Conclusion goes beyond the data: The claim that regret "did not show a tendency to increase" cannot be tested for recent patients given the long delay, and was made just as referrals of teenagers and young adults were rising steeply.
Patients have changed: The patient mix shifted a lot (more teenagers, more born female, younger adults), so regret rates from mostly older, earlier patients may not apply today.
Nobody was asked: The study did not ask patients about regret, satisfaction or wellbeing, so "no regret" here only means "no recorded reversal".
Authors provide the treatment: The study was done by the doctors and researchers who provide the treatment being judged, although no conflicts were declared and there was no specific funding.
Numbers don't match: The summary of the paper gives the 2015 rate for trans women as 1 in 3,800, while the main text gives 1 in 2,800.

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Summary

Key findings

Abstract

Conclusion