Guiding the conversation—types of regret after gender-affirming surgery and their associated etiologies

Contributions: (I) Conception and design: S Danker, JU Berli; (II) Administrative support: SK Narayan, S Danker, JU Berli; (III) Provision of study materials or patients: S Danker, JU Berli; (IV) Collection and assembly of data: SK Narayan, S Danker, JU Berli; (V) Data analysis and interpretation: SK Narayan, J Guerriero, L Schechter, JU Berli, R Hontscharuk; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors.

Correspondence to: Jens Urs Berli, MD. Division of Plastic & Reconstructive Surgery, Oregon Health & Science University, 3181 SW Sam Jackson Road Park, MAC 3168, Portland, OR 97239-3079, USA. Email: ude.usho@ilreb.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0.

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Abstract

Background

A rare, but consequential, risk of gender affirming surgery (GAS) is post-operative regret resulting in a request for surgical reversal. Studies on regret and surgical reversal are scarce, and there is no standard terminology regarding either etiology and/or classification of the various forms of regret. This study includes a survey of surgeons’ experience with patient regret and requests for reversal surgery, a literature review on the topic of regret, and expert, consensus opinion designed to establish a classification system for the etiology and types of regret experienced by some patients.

Methods

This anonymous survey was sent to the 154 surgeons who registered for the 2016 World Professional Association for Transgender Health (WPATH) conference and the 2017 USPATH conference. Responses were analyzed using descriptive statistics. A MeSH search of the gender-affirming outcomes literature was performed on PubMed for relevant studies pertaining to regret. Original research and review studies that were thought to discuss regret were included for full text review.

Results

The literature is inconsistent regarding etiology and classification of regret following GAS. Of the 154 surgeons queried, 30% responded to our survey. Cumulatively, these respondents treated between 18,125 and 27,325 individuals. Fifty-seven percent of surgeons encountered at least one patient who expressed regret, with a total of 62 patients expressing regret (0.2–0.3%). Etiologies of regret were varied and classified as either: (I) true gender-related regret (42%), (II) social regret (37%), and (III) medical regret (8%). The surgeons’ experience with patient regret and request for reversal was consistent with the existing literature.

Conclusions

In this study, regret following GAS was rare and was consistent with the existing literature. Regret can be classified as true gender-related regret, social regret and medical regret resulting from complications, function, pre-intervention decision making. Guidelines in transgender health should offer preventive strategies as well as treatment recommendations, should a patient experience regret. Future studies and scientific discourse are encouraged on this important topic.

Keywords: Transgender surgery, transgender regret, detransition, reversal surgery, retransition, gender-affirming surgery

Introduction

Over the past several years, there has been sustained growth in institutional and social support for transgender and gender non-conforming (TGNC) care, including gender-affirming surgery (GAS) (1). The American Society of Plastic Surgeons (ASPS) estimates that in 2016, no less than 3,200 gender-affirming surgeries were performed by ASPS surgeons. This represents a 20% increase over 2015 (2) and may be partially attributable to an increase in third party coverage (3,4). A rare, but consequential, risk of GAS is post-operative regret that could lead to requests for surgical reversal. As the number of patients seeking surgery increases, the absolute number of patients who experience regret is also likely to increase. While access to gender-affirming health care has expanded, these gains are under continued threat by various independent organizations, religious, and political groups that are questioning the legitimacy of this aspect of healthcare despite an ever-growing body of scientific literature supporting the medical necessity of many surgical and non-surgical affirming interventions. It is therefore not surprising that studies on regret and surgical reversal are scarce compared to studies on satisfaction and patient-reported outcomes. The transgender community rightfully fears that studies on this topic can be miscited to undermine the right to access to healthcare.

The goal of this study is to assist patients, professionals, and policy makers regarding this important, albeit rare, occurrence. We do so by addressing the following:

Based on these results, the authors propose a classification system for both type and etiology of regret.

It is important to acknowledge that the authors identify along the gender spectrum and are experts in the field of transgender health (mental health, primary care, and surgery). We hope to facilitate discussion regarding this multifaceted and complex topic to provide a stepping-stone for future scientific discussion and guideline development. Our ultimate goal is to reduce the possibility of regret and provide clinical support to patients suffering from the sequelae of regret. We present the following article in accordance with the SURGE reporting checklist (available at http://dx.doi.org/10.21037/atm-20-6204).

Methods

Survey

A 16-question survey (see Table S1) was developed and uploaded to the online survey platform SurveyMonkey (SurveyMonkey, Inc., San Mateo, CA, USA). This anonymous survey was e-mailed by the senior author to the 154 surgeons who registered for the 2016 World Professional Association for Transgender Health (WPATH) conference and the 2017 USPATH conference. There were no incentives offered for completing this survey. One reminder e-mail was sent after the initial invitation.

Respondents were asked to describe their practices, including: country of practice, years in practice, a range estimate of the total number of TGNC patients surgically treated, and the number of TGNC patients seen in consultation who expressed regret and a desire to reverse or remove the gendered aspects of a previous gender-affirming surgery. We limited the questions to breast and genital procedures only. Facial surgery was excluded as there are no associated WPATH criteria, so there is less standardization of patient selection for surgery. Thus, we did not feel that those patients should be pooled with those who were subject to WPATH criteria in our calculation for prevalence of regret. We did not define the term “regret” in order to capture a wide range of responses. Respondents were asked about their patients’ gender-identification, the patient’s surgical transition history, and the patient’s reasons for requesting reversal surgery. If the respondents had experience with patients seeking reversal surgery, the number of such interventions were queried to include: the initial gender-affirming procedure and the patients’ reason(s) for requesting reversal procedures. The respondents were also asked about the number of reversal procedures they had performed, and what requirements, if any, they would/did have prior to performing such procedures. Finally, respondents were asked whether they believed that the WPATH Standards of Care 8 should address this topic.

Statistical analysis

Response rate was calculated from the total number of respondents as compared to the number of unique survey invitations sent. Responses to the survey were analyzed using descriptive statistics. When survey questions offered ranges, (i.e., estimating the number of patients surgically treated), the minimum and maximum values of each of the selected answers were independently summed to report a more comprehensible view of the data. Partially completed surveys were identified individually and accounted for in analysis. Any missing or incomplete data items from the survey were excluded from the results with the denominator adjusted accordingly.

Narrative literature review

A MeSH search of the gender-affirming outcomes literature was performed on PubMed for relevant studies pertaining to regret and satisfaction. Terms included (regret) and (transgender) and (surgery) or (satisfaction) and (transgender) and (surgery). These terms included their permutations according to the PubMed search methodology. Original research and review studies whose abstracts addressed the following topics were included for full-text review: gender-affirming surgery, sex reassignment, patient satisfaction, detransition, regret. A total of 163 abstracts were reviewed and a total of 21 articles were closely read for the relevant discussion of regret and satisfaction.

Ethical statement

This study was approved by the Oregon Health & Science Institutional Review Board #17450 and was conducted in accordance with the Declaration of Helsinki (as revised in 2013). Subjects were physicians and so gave consent through their participation in the survey. The patients who were captured in the study were not individually consented for this research as the IRB felt it to be unnecessary given the degree of separation of the study and lack of identifiers. None of the study outcomes affect future management of the patients’ care.

Results

Survey results

Of the 154 surgeons who received the survey between December 2017 and February 2018, 46 (30%) surgeons completed the survey. The survey, including its results, can be found in Table S1. Thirty respondents (65%) were in practice for greater than 10 years, and most (67%) practice in the United States, followed by Europe (22%). The respondents treated between 18,125 and 27,325 TGNC or gender non-conforming (TGNC) patients. Most of the respondents (72%) surgically treated over 100 TGNC patients (see Figure 1 ). Of the 46 respondents, 61% of respondents encountered either at least one patient with regret regarding their surgical transition or a patient who sought a reversal procedure—irrespective of whether their initial surgery was performed by the respondent or another surgeon. Twelve respondents (26%) encountered one patient with regret, and the remaining 12 (26%) encountered two or more patients with regret. One respondent indicated that they encountered between 10 and 20 patients who regretted their surgical gender transition. No respondent encountered more than 20 such patients (see Figure 2 ). This amounted to a total of 62 patients with regret regarding surgical transition, or a 0.2% to 0.3% rate of regret. Of these 62 patients, 13 (21%) involved chest/breast surgery and 45 (73%) involved genital surgery (see Table 1 ).

Distribution of transgender surgery experiences among respondents.

Number of transgender patients encountered who expressed regret.

Table 1

Totals do not add to 100 due to incomplete responses.

Of the 62 patients who sought surgical reversal procedures, at the time of their initial gender-affirming surgery, 19 patients identified as trans-men, 37 identified as trans women, and 6 identified as non-binary. The reasons for pursuing surgical reversal were provided for 46 patients (74%) and included: change in gender identity or misdiagnosis (26 patients, 42%), rejection or alienation from family or social support (9 patients, 15%), and difficulty in romantic relationships (7 patients, 11%). In some patients, surgical complications or social factors were cited as a reason for regret and request for reversal of genital surgery—no change in the patient’s gender identity was elucidated (see Table 2 , etiologies of regret). Of the 37 trans-women seeking reversal procedures, complaints at the time of secondary surgical consultation included: vaginal stenosis (7 patients), rectovaginal fistulae (2 patients), and chronic genital pain (3 patients). Of the 19 trans-men seeking reversal procedures, complaints at the time of secondary surgical consultation included: urethral fistulae (2 patients) and urethral stricture (1 patient). A total of 36 reversal procedures were reported, with supplemental qualitative descriptions provided for only 23 procedures. The distribution of the 23 reversal procedures is found in Table 1 .

Table 2

Totals exceed 100 as respondents could select multiple options.

Most respondents (91%) indicated that new mental health evaluations would be required prior to performing surgical reversal procedures. Eighty-eight percent of respondents indicated that WPATH SOC 8 should include a chapter on reversal procedures (see Figure 3 ).

Respondent’s requirements to proceed with surgical reversal.

Literature review

Overall, the incidence of regret following gender-affirming surgery has been reported to be consistently very low (5-26). Wiepjes et al. (27) reported an overall incidence of surgical regret in the literature in transgender men as et al. comment that outcomes following gender-affirming surgery have improved due to preoperative patient assessment, more restrictive inclusion criteria, improved surgical techniques, and attention to postoperative psychosocial guidance (28). Although retrospective, the Wiepjes et al. study is the largest series to date and included 6,793 patients over 43 years. In this study, only 14 patients were classified as regretful, and only 10 of these patients pursued procedures consistent with intent to detransition. Perhaps most importantly, the Amsterdam team categorized regret into three main subtypes: “social regret, true regret, and feeling non-binary”.

Many of the reviewed studies aimed to identify various variables or risk factors that may identify patients that are at risk or that may predict future postoperative regret.

Earlier studies focused on patient characteristics and identified several variables that were associated with regret in their patient populations. These variables include psychological variables (11,22,23), such as previous history of depression (15,26), character pathology (26) or personality disorder (5,15), history of psychotic disorder (15,28), overactive temperament (26), negative self-image (26) or other psychopathology (15,19,26), as well as various social or familial factors that include history of family trauma (19,29), poor family support (5,11,15,28), belonging to a non-core group (28), previous marriage (15,19), and biological parenthood (15,19). Landen et al. identified poor family support as the most important variable predicting future postoperative regret in transgender men and women undergoing gender-affirming surgery in Sweden between 1972–1992 (28). Defined as subsequent application for reversal surgery, the authors found that 3.8% of their study population regretted their surgery. Other factors previously associated with regret include: sexual orientation (5,7,15,19), impaired postoperative sexual function [most notably in transgender women; (29)], previous military service (29), a physically strenuous job (29), history of criminality (5), age at time of surgery and transition [>30 year increased risk; (5,6,11,15,19,29)], asexual or hyposexual status preoperatively (15,29), too much or too little ambivalence regarding prospect of surgery (29), and/or an absence of gender nonconformity in childhood (15).

Studies examining transgender women have identified postoperative sexual function to be a significant factor contributing to possible surgical regret (15,29). A literature review by Hadj-Moussa et al. (11) (2018) identified poor sexual function as a factor that may contribute to postoperative regret in transgender women after vaginoplasty. Lindemalm et al. (29) (1986) previously reported a rate of 30% regret in their study examining 13 transgender women in Sweden after vaginoplasty. This rate of regret is the highest reported and appears to be an outlier. In their patient population, they found that only one third had a surgically-created vagina capable of sexual intercourse. This was consistent with patient-reported poor postoperative sexual function and highlights the importance of discussing sexual function following vaginoplasty. Similarly, Lawrence et al. (15) (2003) found that occasional regret was reported in 6% of transgender women after vaginoplasty, with 8 of the 15 regretful patients identifying disappointing physical and functional outcomes after their surgery. These findings are consistent with literature reviews that have found that regret is related to unsatisfactory surgical outcomes and poor postoperative function (19,30).

Transgender men have been found to manifest more favorable psychosocial outcomes following surgery and are less likely to report post-surgical regret (26). These findings highlight the importance of surgical results, and their influence on surgical regret. Despite this difference between transgender men and women, overall regret continues to remain low.

While the rate of surgical regret is low, many patients can suffer from many forms of “minor regret” after surgery. Although this could skew the outcomes data (30), this is considered temporary and can be overcome with counseling. As such, this should not be calculated in assessments of true regret (30). Alternatively, lasting regret is attributed to gender dysphoria and is explicitly expressed through patient postoperative behaviors (30). Factors that have been found to contribute to “minor regret” after gender-affirming surgery include postsurgical factors such as pain during and after surgery, surgical complications, poor surgical results, loss of partners, loss of job, conflict with family, and disappointments that various expectations linked to surgery were not fulfilled (19). Previous reviews further underline the importance of following the contemporaneous WPATH Standards of Care. This is especially important regarding patient education pertaining to surgical expectations and outcomes (11,26). Patient education programs are thought to identify those individuals who would most benefit from surgery (20). Other issues reported to decrease postoperative regret include appropriate preoperative diagnosis (19,20,26), consistent administration of hormone therapy (15), adequate psychotherapy (15), and the extent to which a patient undergoes a preoperative “real-life test” living in their desired gender role (15,19,20,26).

Discussion

As compared to the volume of literature regarding postoperative satisfaction following gender-affirming surgery, the literature on regret is still relatively small. However, the literature (and anecdotal surgeon reports) consistently shows low rates of regret. We juxtaposed these findings to the surgeons’ experience with patients seeking reversal surgery or verbalizing regret. We found a rate of regret between 0.2–0.3%. This is consistent with the most recent data from Wiepjes et al. who reported rates of regret of 0.3% for trans-masculine and 0.6% for trans-feminine patients (27). The question of prevalence seems relatively well-answered by the current literature.

Perhaps the most striking finding is the heterogeneity of etiologies and risk factors associated with regret. Within this context, establishing consistent definitions for both regret and its underlying etiology is essential. Furthermore, as our understanding of gender identity evolves, our definitions and understanding become more precise. We highlight the Wiepjes et al. classification as an example of how narrower definitions may preclude an understanding of evolving gender theory. This predominantly single-institution study included 6,793 individuals, and the authors classified regret into three subtypes: social regret, true regret, and feeling non-binary. They categorized patients as either trans-female or trans-male. Conversely, in the 2015 US Transgender Survey, 35% of the nearly 28,000 respondents reported a non-binary identification (31). The classification by Wiepjes et al. is important in that it recognizes that individuals may not regret “transitioning”, but rather regret specific aspects of their medical treatment. More specifically, if these individuals request a reversal procedure, they are not necessarily requesting a “reversal” of their gender identity. However, the Wiepjes et al. study does not elaborate on this topic.

Case example: a trans-masculine, non-binary individual after testosterone therapy and chest masculinization regrets having secondary sex characteristics from hormonal therapy but is highly satisfied following chest masculinization. This should be considered true gender-related regret as the individual desires, at least in part, to return to the phenotype of the sex assigned at birth (e.g., hair removal). However, the etiology regarding this type of regret can be varied. For example, the etiology may include: insufficient exploration of the individual’s gender identity [by the individual and/or mental health professional (misdiagnosis)], lack of knowledge of professionals regarding surgical options for non-binary individuals, insurance carrier mandate to undergo hormonal therapy prior to chest masculinization (healthcare stigma), etc.

Based on the reviewed literature and our consensus expert opinion, we propose the following classification of regret, examples of etiology pertaining to regret ( Table 3 ), and an overview of associated terminology regarding regret ( Table 4 ).

Table 3

Categorizing the etiology of regret. Regret is a general term that describes an emotional state wherein a previous decision now feels incorrect