Experience of Chest Dysphoria and Masculinizing Chest Surgery in Transmasculine Youth

Study participants were recruited from a large US pediatric hospital–based gender clinic. Participants were eligible if they were aged 13 to 21 years, assigned female sex at birth, identified their gender as male or along the masculine spectrum, endorsed having had discomfort or distress about their chest, had experienced notable breast development (as indicated by electronic health record [EHR] documentation revealing a previous breast sexual maturity rating of 4 to 5 or by being postmenarcheal), and received care at the Children’s Hospital of Philadelphia Gender and Sexuality Development Clinic. Youth were ineligible if (1) they had undergone MCS within the past 90 days (so that post-MCS youth would be able to reflect on the impacts of the procedure on their life beyond the recovery period) or (2) their primary gender-affirming care provider was the lead investigator.

Potentially eligible youth were identified by the clinical team, and a limited EHR review was performed to ensure appropriateness for study inclusion. Youth were purposefully sampled in an effort to recruit a sample of both non-MCS and post-MCS youth that was diverse in age, race, ethnicity, and insurance status. Youth were approached either in person during a clinic visit, by phone, or by e-mail. Recruitment continued until thematic saturation was achieved.

The study was approved by the Children’s Hospital of Philadelphia Institutional Review Board. Written informed consent was obtained either from youth (≥18 years) or from guardians of minors who provided their assent. Study visits were conducted in person or via video conference on the basis of youth preference. A one-on-one semistructured interview was conducted with each youth to explore their experiences with chest dysphoria and their thoughts about or experiences with MCS (see the Supplemental Information for interview questions). Youth also completed a brief demographic survey. The participant’s EHR was reviewed post study visit. Participants received a $40 gift card after interview completion.

All interviews were audio recorded, transcribed, deidentified, and entered into NVivo software (version 12; QSR International Pty Ltd, Doncaster, Australia). Key themes and patterns were identified by using a modified grounded theory approach.²⁰  The team developed a codebook by reading each transcript independently and identifying key ideas and also included a priori codes derived from the study questions. Key ideas became codes with definitions. A team of 3 coders triple-coded the first 14 interviews. Discrepancies were reviewed and discussed, and the codebook was revised iteratively. The remaining 16 interviews were double-coded. Interrater reliability was calculated by using Cohen’s κ, with a median across all codes of 0.92 (range 0.80–0.99). The contents of each code were summarized and examined for patterns and themes. Bivariate analyses of sociodemographic and clinical variables were conducted by using χ² tests for categorical variables and t tests for comparison of means.

Of 35 youth approached for recruitment, 30 youth enrolled and completed the study visit: 16 had not had MCS (non-MCS) and 14 had undergone MCS (post-MCS). Descriptive characteristics of each group are shown in Table 1. There was no significant difference in age, race, ethnicity, or insurance status between the 2 groups. Youth overall had a mean age of 17.5 years (range 14–21 years) and were predominantly white, non-Hispanic, and privately insured. The post-MCS youth were more likely to be receiving testosterone therapy than the non-MCS group and were more likely to be on testosterone for a longer time. Additional information about the post-MCS group may be found in Table 1. All participants met Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition criteria for gender dysphoria. Five youth were approached for recruitment and did not enroll: 4 met eligibility criteria but declined to participate (2 declined because of time constraints, 1 declined because of discomfort with audio recording, 1 gave no reason), and 1 did not respond to the recruitment call and e-mail.

Eight major themes emerged, which are presented with example quotes in the text below with randomly assigned initials for confidentiality. Additional illustrative quotes are presented in Tables 2 and 3. In general we did not find major differences in themes by demographics, nor between the non- and post-MCS groups, regarding experiences before MCS, so results are reported in aggregate unless otherwise specified.

All youth described how chest dysphoria triggered strong negative emotions; the most commonly cited emotions included sadness, depression, anxiety, anger or frustration, a subjective feeling of heaviness or burden, self-loathing, disgust, annoyance, and envy or jealousy: “I was really self-loathing…the chest dysphoria–it just ate away at me” (E.P.).

Many youth noted that chest dysphoria made them emotionally dysregulated: “[Chest dysphoria] would influence how I would interact with the world that day, just on a baseline more anxious, more twitchy, ready to be reactive sort of to just things, in general” (D.V.).

Some reported that chest dysphoria induced thoughts of suicide and self-harm: “Suicidal ideation definitely stemmed from that—from chest dysphoria and the feelings that it gave me” (X.B.).

Nearly all youth reported feeling helpless and unable to escape chest dysphoria, and many reported constant intrusive thoughts: “[Chest dysphoria] was just like always on my mind no matter what I was doing” (A.C.).

Many youth described that their chest dysphoria was not confined to social settings. They explained that chest dysphoria caused distress even when they were alone, not just at times when their chest might be in view of others: “[My chest dysphoria is worse] when I’m in the shower…when I’m by myself it’s an issue because I’m like, wow. That’s there right now.” (L.E.).

Every youth reported experiencing functional impairments from chest dysphoria. Many avoided social interactions because of anxiety or shame about their chest, fear of being outed as transgender if others noticed their chest contour, or not wanting to endure the discomfort of binding their chest (often viewed as a requisite when leaving the home because of dysphoria): “I don’t really want to be outside. I don’t want people to see me…because I feel gross and just like icky all around” (T.Q.).

Chest dysphoria interfered with interpersonal interactions, causing difficulty in engaging with others because of intense anxiety, shame, or intrusive thoughts.

Many explained that they adopted a hunched or closed body posture and would avoid hugs or physical contact as strategies to help hide their chest; however, these strategies would often inadvertently drive others away: “I’m kind of hunched over or I push my shoulders forward…and I just kind of feel like I have to keep hiding myself or just trying to deflect the focus” (Z.P.).

Youth also reported that chest dysphoria interfered with school or work.

Chest dysphoria led many to avoid sports and exercise, citing pain or breathing difficulties from chest binding or inability to keep their chest hidden from others. For some youth, chest dysphoria led to avoidance of bathing and public restrooms, making it challenging to address personal hygiene.

All youth engaged in chest binding before MCS, with most doing so on a daily basis. Binding was unanimously viewed as a useful coping strategy, and many reported that it was essential to helping them leave home and get through the day: “The binder helped me at least get out of my room more…because at least I could go out in public and I knew I looked pretty flat, and I could pass.” (L.S.).

However, although binding helped to alleviate psychological distress, this came at a cost. All youth reported binding to be physically uncomfortable, and many reported adverse health effects, such as pain (in the chest, ribs, back, or shoulders), difficulty breathing, skin rashes or irritation, overheating, and decreased endurance: “[My binder] was incredibly restricting with my breathing. And if I wasn’t wearing my binder, I wouldn’t go out and do things. So I’d wear it even if I was unable to breathe” (D.V.).

As one participant noted, there was a constant balancing act between physical and mental well-being: “I’d rather be in physical pain than in mental pain. So I’d rather just wear the binder than just deal with it” (A.C.).

Every youth in the non-MCS group intended to undergo MCS in the future. All acknowledged the risks and irreversibility of MCS yet expressed confidence in their decision to pursue it, feeling that MCS would be critical to improving their quality of life and functioning: “Even if it’s not the prettiest surgery, I will be comfortable.… [I won’t] have to limit my activities or limit the most ridiculous things because of my breasts. More freedom. I’ll get to live. I’m not living now…I feel like I’m just getting by” (N.C.).

Many barriers to obtaining MCS were identified, the most common of which were lack of insurance coverage for the procedure and high burden of out-of-pocket costs. Most families of post-MCS youth paid for MCS out of pocket because of insurance denial due to age. Other barriers to MCS included lack of family support for MCS, difficulty accessing a skilled surgeon, and challenges with scheduling surgery around school and/or work.

All post-MCS youth reported complete or near-complete resolution of their chest dysphoria after MCS. They were unanimously satisfied with their MCS results and had no regrets, regardless of the surgical technique used.

All post-MCS youth experienced improvements in quality of life and functioning after MCS. Youth reported improvements in mood, confidence, self-esteem, and interpersonal relationships; decreased anxiety; increased social engagement and physical activity; and relief from the cognitive load of chest dysphoria, enabling them to direct their attention to other endeavors.

Several youth expressed that chest dysphoria was the most prominent or most distressing aspect of their overall gender dysphoria. All youth had access to testosterone earlier than MCS, yet some viewed MCS as the more vital component of their treatment: “I honestly think that [MCS] would help like 95 percent of my issues with dysphoria just solely because for me my chest is the most dysphoric thing about me” (I.B.).

Youth undergoing testosterone therapy noted it had variable effects on their chest dysphoria, with similar numbers of youth commenting that testosterone made their chest dysphoria worse, unchanged, or only slightly better. Of those who felt that their dysphoria had worsened while they were on testosterone, some theorized that their chest dysphoria appeared to worsen because of improvement in other dimensions of dysphoria (ie, voice, menstruation) due to the testosterone therapy.

Overall, our study reveals that chest dysphoria is a critical component of gender dysphoria, leading to marked suffering and functional impairments, and can contribute to suicidality. Youth in the post-MCS cohort experienced tremendous benefits, including resolution of chest dysphoria and improvements in mood, confidence, quality of life, and functioning, mirroring what has been described in the adult literature.^9–15  In addition, the 10 youth who had MCS as minors were satisfied with their surgical outcomes and reported similar benefits to what has been seen in the adult literature.

Although it is common for pediatric and adolescent gender-affirming medical care to be thought of as limited to pubertal blockers and gender-affirming hormones, postpubertal transmasculine youth reported that testosterone did little to alleviate their chest dysphoria. Olson-Kennedy et al¹⁹  observed a positive correlation between their measure of chest dysphoria and time on testosterone therapy. However, several of the youth in our study who reported worsening chest dysphoria after starting testosterone therapy reflected that this was not due to testosterone directly worsening their chest dysphoria but rather due to testosterone resolving other aspects of dysphoria and no longer drawing attention away from the chest. In addition, some insurers and surgeons require testosterone therapy for a requisite amount of time before MCS,¹⁸  but our data suggest that such requirements may potentially cause harm by restricting or delaying access to MCS.

These data suggest that MCS is a critical component of gender-affirming care for many transmasculine youth with chest dysphoria and that MCS should be considered whenever it is clinically indicated, even if the youth is a minor, to alleviate suffering. Recently, legislation has been proposed in 14 US states to prohibit gender-affirming medical and surgical care for minors,^21–34  conflicting with best practice guidelines^16,17  and the official position of the American Academy of Pediatrics.³⁵  Our results suggest that such age-based bans for clinically indicated care are misguided. Withholding clinically indicated MCS purely on the basis of age may needlessly prolong suffering, as unanimously described in our study, resulting in heightened risk of negative health outcomes, including suicidality.

Our study has several limitations, including a sample from a single clinical site that was predominantly white and privately insured, which reflects the population receiving gender-affirming care in our clinic and across the United States³⁶  but limits generalizability to youth in other locations or youth who lack access to care. In addition, we focused on transmasculine youth and did not include nonbinary youth assigned female sex at birth who do not identify along the masculine spectrum, so our findings cannot be generalized to that population, and is an area for future work.

This study is one of the first studies to describe transmasculine youths' experiences of chest dysphoria and the impact that MCS can have in alleviating suffering and improving function. These findings lend support for current clinical practice guidelines,^16,17  which support MCS in minors when clinically and developmentally appropriate, and underscore the importance of insurance coverage not being restricted by age. Future research is needed to develop and assess patient-reported outcomes of MCS across a broad age range of adolescents, with the hope that it will lead to improved health outcomes in this vulnerable population.

We thank Katelyn Regan and Samantha King for assistance with participant recruitment, Lenya King and Kathryn Saulinas for assistance with multimedia editing, and the youth who shared their experiences with us.

EHR

electronic health record

MCS

masculinizing chest surgery