Chronic pain in youth with gender dysphoria (GD) is poorly understood. The aim of our study was to review the clinical presentation of 8 youth with GD in a multidisciplinary chronic pain clinic. A single center retrospective chart review was conducted to obtain information on demographics, clinical care, previous diagnoses, and validated clinical measures. We present the trajectory of pain in this population with treatment of GD. Recognition and treatment of GD in youth with pain may improve pain outcomes.

Gender dysphoria (GD) is currently understood by the Diagnostic and Statistical Manual of Mental Disorders as an incongruence between one’s affirmed gender and the gender assigned at birth (natal or biological sex).1  The prevalence of a transgender identity is estimated to range from 0.1% to 0.7% of the population,2  with recent studies revealing an increase in the number of adults and youth seeking care for GD.35  Because of the multifaceted nature of taking care of these patients, it is essential that clinicians are aware of the needs of this population while also being aware of the relationship between GD and other chronic conditions.

Chronic pain in adolescents is a common undertreated condition. A recent multinational survey of 404 206 school-aged adolescents reported 74.4% of participants experienced headaches, stomach aches, and/or back pain once a month or more.6  Recurrent somatic pain in adolescence has been shown to be an important predictor of future chronic pain68  and is associated with various behavioral health diagnoses, including posttraumatic stress disorder, anxiety and depression.912  Annually, pediatric pain related conditions are estimated to cost $11.8 billion in direct health care expenditures.13  No researchers have attempted to delineate the relationship of chronic pain in youth with GD. The aim of this case series is to describe 8 adolescents with co-occurring GD and chronic pain.

A retrospective chart review was performed of 8 youth who, during their treatment in the chronic pain clinic, identified as experiencing GD from January 2017 to September 2019. Demographic data, baseline assessments, pain trajectories, and treatments received were collected. The baseline assessments and pain trajectory data are presented as a mean for the entire group.

The Pain Burden Interview (PBI), Functional Disability Inventory (FDI), and the Pain Catastrophizing Scale (PCS) are all self-reported, validated, and clinically relevant tools that have been designed to measure the impact of chronic pain, impairments in physical and psychosocial functioning, and an individual’s negative mindset, magnification and rumination about their pain,1420  respectively. Each patient was asked to complete a PBI at time of their initial pain clinic evaluation and all follow-up evaluations, whereas the other measures were completed at the initial pain appointment only.

Medical records of 8 adolescents managed in our multidisciplinary pain clinic who had a diagnosis of GD were reviewed. Six were assigned female gender at birth and had a male affirmed gender. Two were assigned male at birth and had a female affirmed gender. The mean age at initial appointment (Table 1) with the chronic pain program was 14.6 years (±2.0), although the mean age at the onset on their pain symptoms was 11.25 years (±2.0). Patients presented to the pain clinic with a mean PBI of 17 (±4.04), with their functional disability and PCS levels being reported at 25.71 (±7.57) and 33.43 (±11.18), respectively. All of these scores are in the moderate range. Patients had a median of 4.50 visits to the pain program for treatment of their ongoing pain symptoms, with mean PBI at their last pain appointment being 12.86 (±7.70).

TABLE 1

Descriptive Statistics Regarding the Cohort’s Pain Symptoms, Pain Measures, Functionality Measures, Pain Clinic Appointments, Gender Clinic Appointments, and Gender Incongruent Behavior

nMinimumMaximumMean (SD)
Age at onset of pain symptoms, y 15 11.25 (±1.98) 
Age at first pain appointment, y 12 17 14.63 (±2.00) 
PBI score at first pain appointmenta 11 23 17.00 (±4.04) 
PBI score at last pain appointmenta 23 12.86 (±7.70) 
FDI total at first pain appointmenta 13 36 25.71 (±7.57) 
PCS total score at first pain appointmenta 17 46 33.43 (±11.18) 
Total number of appointments with the pain clinicb 30 4.50 (N/a) 
Age at onset of expressed gender incongruencea 16 7.857 (±5.21) 
Age of first appointment with gender clinic 12 17 15.88 (±1.73) 
Total number of appointments with gender clinic 3.87 (±1.64) 
nMinimumMaximumMean (SD)
Age at onset of pain symptoms, y 15 11.25 (±1.98) 
Age at first pain appointment, y 12 17 14.63 (±2.00) 
PBI score at first pain appointmenta 11 23 17.00 (±4.04) 
PBI score at last pain appointmenta 23 12.86 (±7.70) 
FDI total at first pain appointmenta 13 36 25.71 (±7.57) 
PCS total score at first pain appointmenta 17 46 33.43 (±11.18) 
Total number of appointments with the pain clinicb 30 4.50 (N/a) 
Age at onset of expressed gender incongruencea 16 7.857 (±5.21) 
Age of first appointment with gender clinic 12 17 15.88 (±1.73) 
Total number of appointments with gender clinic 3.87 (±1.64) 

N/a, not applicable.

a

Data from all 8 patients was not available regarding this measure during the retrospective chart review.

b

The median measure was presented regarding this value due to an outlier value.

Pain complaints at time of initial presentation included headaches, musculoskeletal, and abdominal pains. Previous behavioral health diagnoses included anxiety and/or depression in 75% (6 of 8) of patients with 37.5% (3 of 8) reporting suicidal ideation in the past. A total of 62.5% (5 of 8) were diagnosed with pain amplification syndrome and/or musculoskeletal pain syndrome with other diagnoses being abdominal pain, chronic back pain, low back pain, and sleep disorder.

All patients received multidisciplinary pain management, which included physical therapy, behavioral health treatments from mental health providers and follow-up appointments. A total of 37.5% (3 of 8) received treatment of GD before presenting to the pain clinic, whereas the rest were referred to our gender clinic during their pain treatment.

The mean age at initial appointment with the gender clinic was 15.9 years (±1.7), whereas the onset of gender incongruence was reported at a mean of 7.9 years (±5.2). Patients with GD were all treated according to Endocrine Society Clinical Practice guidelines, which included care from a mental health provider with expertise in GD, hormonal puberty suppression, and gender affirming hormonal treatment21 ; 0.75% (6 of 8) received gender affirming hormonal treatments at time of this publication. Patient cohort had a mean of 3.87 visits (±1.642) to the gender clinic for treatment of GD.

A 16-year-old patient, assigned male at birth, presented to our multidisciplinary chronic pain program with primary complaints of chronic headaches, joint pain, and fatigue. At the initial pain appointment, the patient described their headache pain as 7 of 10, joint pain as 2 of 10 with a “dull ache at feet and elbows,” and fatigue, despite adequate levels of sleep. In addition to the primary complaints, the patient noted symptoms of anxiety, depression, and dizziness. The patient’s self-reported PBI, FDI, and PCS were all at moderate levels. The patient was diagnosed with amplified musculoskeletal pain syndrome, and recommendations were to start a graded exercise program with a physical therapist, follow-up with the pain program, and continue ongoing behavioral therapy.

Over the next 14 months, the patient had 5 visits. The patient’s pain burden improved on starting a new pharmacologic regimen for sleep and pain control, as well sessions with a pediatric pain psychologist (Fig 1). At the time of the patient’s 5-month follow-up, and at the age of 17, the patient began estrogen therapy to transition to the female gender, while continuing her physical, behavioral, and medical treatments. Since that time, she has continued her ongoing hormonal therapy and, more recently, underwent gender confirmation surgery (orchiectomy and vaginoplasty).

FIGURE 1

PBI scores from each of the patient’s pain clinic appointments. Patient case no. 1. The median measure was presented regarding this measure because of an outlier value.

FIGURE 1

PBI scores from each of the patient’s pain clinic appointments. Patient case no. 1. The median measure was presented regarding this measure because of an outlier value.

Close modal

A 12-year-old assigned female gender at birth patient, with a history of obesity, depression, and bilateral spondylolysis presented to our pain program with primary complaints of low back pain for 7 months. At the initial visit, the patient described intermittent back pain, which was exacerbated by long periods of sitting, as well as physical activity. The patient was diagnosed with chronic back pain, and recommendations were to follow-up with physical therapy, continue ongoing behavioral therapy sessions, and follow-up with the pain program at regular intervals. Data regarding the patient’s initial PBI, FDI, and PCS scores were not available during the retrospective chart review.

Over the next 9 years, the patient had regular follow-up appointments. During this time, the patient reported a lower pain burden when able to follow and access the care plan and reported higher pain burden scores during the times of increased stress, weight gain, and lower levels of physical activity. The patient was eventually referred to our weight management program. Pain and disability waxed and waned over this time period (Fig 2).

FIGURE 2

PBI scores from each of the patient’s pain clinic appointments. Patient case no. 2. The median measure was presented regarding this measure because of an outlier value.

FIGURE 2

PBI scores from each of the patient’s pain clinic appointments. Patient case no. 2. The median measure was presented regarding this measure because of an outlier value.

Close modal

At age 18, the patient disclosed GD, was referred to a gender clinic, and consequently started on a gender affirming hormonal regimen of testosterone. Since that time, the patient and his family have made extensive efforts to follow his medical, behavioral, and physical therapy plans as advised, while continuing his GD treatment. At the patient’s most recent follow-up appointment with the clinic, he described his pain as being “manageable.”

The interplay between chronic pain and GD in adolescents is not well understood. Our study presents data revealing a downward trend in pain scores of 8 patients who were treated for chronic pain and GD. All patients of the current cohort were treated with a multidisciplinary pain management approach and were treated by an endocrinologist at our gender clinic according to the guidelines set forth by the Endocrine society.21  To our knowledge, this is the first study describing chronic pain in association with GD in youth.

Our cohort reported dysphoria over their assigned gender at a mean age of almost 8 years, while reporting the onset of their pain at a mean age of almost 12 years. On average, current participants of the study presented to the chronic pain program at CCMC ∼1 year before their initial appointment with the gender clinic, with 5 out of the 8 patients being referred to the CCMC gender clinic during their pain treatment. This suggests that improved recognition of GD may allow for earlier interventions.

Chronic pain is currently understood on the basis of an intersection between physiologic and psychosocial factors22 ; hence, the increased psychological vulnerability that adolescents with GD experience may place this population at an elevated risk for developing and experiencing significant disability related to chronic pain.2328  Long-term effects of chronic pain in adolescents has been linked to difficulty with emotional and social functioning,28  as well as limitations to everyday activities (walking, playing sports, engaging in age appropriate activities).29  Studies have also revealed an improvement in mental health outcomes in children with GD who are supported in their affirmed gender identity.30  Thus, it stands to reason that chronic pain in youth may improve when one’s affirmed gender identity is supported both socially and medically.

Our current study was limited by its retrospective case design, as well as its small sample size. In future studies, researchers seeking to delineate the relationship between adolescent chronic pain and GD will benefit from a larger sample size, allowing for broader conclusions and clinical recommendations to be made for this group of patients. Additionally, our study was limited by the information that was available within the electronic medical record, making it difficult to obtain data that was not captured within the system.

Our study describes GD in 8 adolescents receiving treatment of chronic pain and GD. An increased emphasis on the recognition and treatment of GD in adolescents with chronic pain may lead to improved pain outcomes.

FUNDING: No external funding.

Mr Sayeem conceptualized and designed the study, acquired and analyzed the data pertinent to the study, drafted the initial draft of the manuscript, and revised the final manuscript for intellectual content; Dr Zempsky conceptualized and designed the study, drafted the initial manuscript, and critically revised the manuscript for intellectual content; Ms Carter and Dr Phulwani analyzed and interpreted the data pertinent to the study and critically revised the manuscript for important intellectual content; and all authors approved the final manuscript of the study and are agreeable for this study to be submitted in its current form and are in agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

FDI

functional disability inventory

GD

gender dysphoria

PBI

pain burden interview

PCS

pain catastrophizing scale

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: Dr Zempsky has received grants and revenue from Glycomimetics, GlaxoSmithKline, and Lundbeck unrelated to the current study. The remaining authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURES: The authors have indicated they have no financial relationships relevant to this article to disclose.