Objectives. We examined the extent of nonprescribed hormone use and self-performed surgeries among transgender or transsexual (trans) people in Ontario, Canada.

Methods. We present original survey research from the Trans PULSE Project. A total of 433 participants were recruited from 2009 to 2010 through respondent-driven sampling. We used a case series design to characterize those currently taking nonprescribed hormones and participants who had ever self-performed sex-reassignment surgeries.

Results. An estimated 43.0% (95% confidence interval = 34.9, 51.5) of trans Ontarians were currently using hormones; of these, a quarter had ever obtained hormones from nonmedical sources (e.g., friend or relative, street or strangers, Internet pharmacy, herbals or supplements). Fourteen participants (6.4%; 95% confidence interval = 0.8, 9.0) reported currently taking nonprescribed hormones. Five indicated having performed or attempted surgical procedures on themselves (orchiectomy or mastectomy).

Conclusions. Past negative experiences with providers, along with limited financial resources and a lack of access to transition-related services, may contribute to nonprescribed hormone use and self-performed surgeries. Promoting training initiatives for health care providers and jurisdictional support for more accessible services may help to address trans people’s specific needs.

Many transgender or transsexual (trans) people seek to align their outward physical sex with their internal gender identity through hormonal and surgical interventions. The goal of this treatment is to reduce or eliminate the hormonally induced secondary sex characteristics or genitalia of the natal sex while inducing those of the core gender,1 thereby lessening the associated distress. The Standards of Care (SOC) developed by the World Professional Association for Transgender Health provide clinical guidelines for health professionals to assist trans people with medical transitions, specifically hormonal and surgical treatments.2 The SOC are flexible to meet the diverse health care needs of trans people, resulting from their unique anatomic, social, or psychological situations. Thus, the SOC allow health professionals to take into account the full range of health services available to trans people, in accordance with their clinical needs and goals for gender expression. In general, for many trans people, medically (and socially) transitioning is important and necessary to maximize health and personal safety, psychological well-being, and self-fulfillment.

Widespread nonprescribed hormone use has been documented in convenience samples from US trans communities. Having ever used nonprescribed hormones was reported by 58% of those on the male-to-female (MTF) and female-to-male (FTM) gender spectrums in Washington, DC,3 and by nearly 60% of MTFs and 22% of FTMs in a Virginia study.4 In Chicago, Illinois, 71% of MTF youths reported obtaining hormones from a nonmedical source in the past year,5 and in San Francisco, California, 29% of MTFs and 3% of FTMs reported using nonprescribed hormones in the past 6 months.6 A recent study of MTFs in New York City indicated that 23% were currently taking hormones from a source that did not include a physician.7 These collective findings are troubling as nonprescribed hormone users may be at increased risk for health problems resulting from improper dosing and a lack of monitoring.8,9 In rare instances, “do-it-yourself” (DIY) surgeries (e.g., removal of testes or breasts) have also been reported in MTFs10–17 and FTMs.18 Barriers to transition-related health care have also been identified within Canada’s “universal” health care system, and can similarly lead to hormones obtained without a prescription.19 However, no published studies have quantitatively examined the extent of DIY transitions in Canada.

In Ontario, Canadian citizens, permanent residents, and long-term work permit holders receive provincially funded universal health coverage through the Ontario Health Insurance Program (OHIP), which covers 100% of doctor visits, including blood work. However, prescription medications, including hormones, are not universally funded. Certain prescribed medications are covered for people on disability benefits or social assistance, and some employers and educational institutions provide health insurance programs that partially or fully cover prescription medications. Others, including those on low incomes, usually have to pay for their own medications.

From 1998 to 2008, the Government of Ontario delisted coverage for sex-reassignment surgeries (SRS) from OHIP. During this 10-year period, individuals were required to pay out of pocket. At present, patients approved by a single gender clinic in Toronto receive SRS coverage.20 Specifically, MTFs may be covered for orchiectomy and vaginoplasty, and FTMs for mastectomy, hysterectomy or bilateral salpingo-oophorectomy, and metoidioplasty or phalloplasty. However, the approval process is long and has many conditions, and even after approval the pathway to the various surgeries is complicated.

We aimed to estimate the prevalence of nonprescribed hormone use and self-performed surgeries among trans Ontarians, based on a province-wide probability sample of socially networked trans people. The present study goes beyond existing research by using a population-based rather than a convenience sample. It also covers a jurisdiction outside the United States that provides universal health coverage, thereby shedding light on the difficulties of accessing hormones and SRS in settings where services are publicly funded.

Data for this analysis were from the Trans PULSE Project, an Ontario-wide community-based research initiative focused on the health needs of trans people (available at: http://transpulseproject.ca). We carried out survey recruitment from May 2009 to April 2010 with respondent-driven sampling, a probability-based method for recruiting through social networks.21,22 To be eligible, participants had to be aged 16 years or older, identify as trans, and live, work, or receive health care in Ontario. We selected 16 trans people as the initial participants (seeds) through community organizations, social venues, online, and by word of mouth via a formal application process. The seeds represented, as much as possible, Ontario’s diversity in terms of income, age, ethnicity (e.g., South Asian, Aboriginal, Latin American), newcomer status, and area of residence (e.g., Metropolitan Toronto, Ottawa, Southwestern Ontario). In respondent-driven sampling, seeds recruit a limited number of eligible peers, who in turn recruit other peers. In Trans PULSE, we set a quota of 3 recruits per participant, and we offered Can$20 incentives, as well as secondary incentives valued at Can$5 for the final 2 months of recruitment. We added 22 seeds from across Ontario once we had recruited 4 to 5 waves of participants. We deemed reseeding appropriate because of the slow pace of recruitment and confirmation that we would have time to obtain sufficiently long recruitment chains. The additional seeds primarily represented community leaders who were committed to following up with their recruits. Overall, all of the selected seeds were well connected (i.e., involved in trans communities). The initial 16 seeds also provided valuable input into the survey design.

We tracked network referral patterns and recorded the personal network size of each participant. Network size data are used in weighted analyses to account for the oversampling of groups with larger network sizes, as well as homophily (i.e., preference for recruiting those with characteristics similar to oneself).23,24 We based our study on data obtained from a total of 433 participants recruited during the 12-month data collection period. Of these, 402 provided sufficient information to be included in hormone-specific analyses.

Measures
Do-it-yourself variables.

We asked participants who were currently taking hormones to identify the source(s) from which they received hormones. We defined those who had obtained hormones from sources other than a family doctor or specialist as users of nonprescribed hormones. In assessing DIY surgeries, we asked participants if they had ever performed any surgical procedures on themselves and, if so, they were asked to describe the procedure(s).

Hormone or surgery access variables.

Factors potentially affecting hormone or surgery access included having a regular family doctor, currently living with a mental health condition, having ever been denied a prescription for hormones, having insurance coverage for hormones, and employment status. We also included having a history of sex work because trans people whose primary source of income is sex work face difficulties providing proof of employment, a key criterion for obtaining approval of publicly funded SRS. Finally, we constructed a composite variable measuring participants’ trans-specific negative experiences with providers who could affect access to or prescribe hormones: family doctors, walk-in-clinic doctors, and mental health providers. Examples of negative experiences included whether a physician had ever refused to see them or ended care because they were trans, belittled or ridiculed them for being trans, or refused to examine parts of their bodies because they were trans. Participants who had checked any of the experiences were coded as having had trans-specific negative experiences.

Analysis

We obtained estimates of population prevalences and 95% confidence intervals by using RDSAT version 6.0.1 (Cornell University, Ithaca, NY). We based inferences on analytical methods proposed by Heckathorn and Salganik.21,25 We derived prevalence estimates by using a data-smoothing algorithm, and weighted them on the basis of the mean network size for each group and proportional recruitments across groups.21,24,25 We based 95% confidence intervals (CIs) derived from RDSAT on a resampling procedure with 10 000 iterations, which mimics some features of respondent-driven sampling recruitment.26 We used a case series design to characterize participants currently taking nonprescribed hormones or having self-performed surgeries.

Weighted frequencies for demographics are presented in Table 1 for the entire sample. Overall, trans people in Ontario were young. Most had at least some college or university education; however, 49.0% (95% CI = 41.0, 59.0) were earning an annual personal income of less than Can$15 000; 32.7% (95% CI = 21.6, 41.9) were residing in Metropolitan Toronto.

Table

TABLE 1— Weighted Frequencies of Demographics for Trans People in Ontario: Trans PULSE Project, 2009–2010

TABLE 1— Weighted Frequencies of Demographics for Trans People in Ontario: Trans PULSE Project, 2009–2010

Characteristic Total (n = 433), % (95% CI)
Gender spectruma
 Male-to-female47.2 (37.9, 55.5)
 Female-to-male52.8 (44.5, 62.1)
Age, y
 16–2433.2 (25.0, 42.9)
 25–3429.1 (22.6, 37.2)
 35–4416.4 (10.9, 22.5)
 45–5412.5 (6.9, 18.4)
 55–646.3 (2.3, 9.8)
 ≥ 652.5 (0.6, 5.1)
Racial/ethnic group
 Aboriginal6.8 (3.6, 10.5)
 Non-Aboriginal White77.4 (71.2, 84.3)
 Non-Aboriginal racialized15.7 (9.6, 21.5)
Racial/ethnic background(s)b
 Aboriginal6.0 (2.9, 9.6)
 White Canadian/American/European87.8 (82.5, 92.7)
 East/South/Southeast Asian7.0 (3.4, 11.5)
 Black Canadian/American/African3.5 (0.9, 6.9)
 Latin American2.9 (0.8, 5.8)
 Middle Eastern3.7 (1.1, 7.2)
 Other3.8 (0.9, 7.1)
Region of residencec
 Southeastern Ontario14.9 (7.4, 24.6)
 South-Central Ontario16.8 (10.7, 24.7)
 Metropolitan Toronto32.7 (21.6, 41.9)
 Southwestern Ontario27.3 (16.8, 38.5)
 Northern Ontario8.4 (3.0, 16.2)
Education
 < high school12.5 (8.0, 18.7)
 High-school diploma16.2 (10.9, 21.5)
 Some college or university28.2 (22.2, 35.4)
 College or university degree35.6 (28.0, 42.6)
 Graduate or professional degree7.6 (3.5, 11.5)
Personal annual income, Can$
 < 15 00049.0 (41.0, 59.0)
 15 000–29 99921.3 (15.1, 29.1)
 30 000–49 99915.9 (9.3, 20.2)
 50 000–79 9997.2 (3.2, 11.1)
 ≥ 80 0006.7 (2.7, 12.6)

Note. CI = confidence interval; trans = transgender or transsexual.

aGender spectrum refers to participants assigned male or female sex at birth but who currently identify as a gender that is not concordant with their assigned birth sex. This includes individuals who may identify as two-spirit, genderqueer, bigender, or other identities.

bRacial/ethnic background was a check-all-that-apply item, so totals will not sum to 100%.

cBased on the first 3 letters of participants’ postal codes.

Table 2 presents weighted frequencies for variables relevant to hormone use among current users. Overall, 43.0% (95% CI = 34.9, 51.5) of trans Ontarians were currently using hormones, and an estimated 26.8% (95% CI = 18.0, 36.7) had ever used nonprescribed hormones. Current users most commonly obtained hormones from a family doctor, followed by a specialist (e.g., an endocrinologist). Fourteen participants (6.4% of current users; 95% CI = 0.8, 9.0) were characterized as DIY hormone users. Most current users in Ontario were receiving regular blood tests to monitor hormonal effects.

Table

TABLE 2— Weighted Frequencies of Hormone Use for Trans People in Ontario: Trans PULSE Project, 2009–2010

TABLE 2— Weighted Frequencies of Hormone Use for Trans People in Ontario: Trans PULSE Project, 2009–2010

Variable Current Users (n = 233), % (95% CI)
Ever used nonprescribed hormones26.8 (18.0, 36.7)
Hormone regimena
 Progesterone13.2 (6.5, 26.7)
 Estrogen54.9 (40.1, 68.9)
 Antiandrogens30.7 (19.8, 42.2)
 Testosterone42.7 (27.3, 57.0)
Sources of hormonesa
 Family doctor67.3 (51.9, 81.4)
 Specialist30.9 (19.9, 46.1)
 Internet pharmacy1.4 (0.1, 5.0)
 Friend or relative4.7 (0.8, 9.7)
 Street or strangersb
 Herbals or supplements3.2 (0.0, 6.9)
Received blood tests to monitor hormones
 Regularly70.2 (66.8, 84.2)
 Not regularly24.9 (12.3, 29.3)
 No4.9 (0.7, 8.6)
Inject hormones50.3 (35.1, 61.6)
Source(s) of syringes or needlesac
 Pharmacy49.0 (25.6, 67.5)
 Doctor’s office39.6 (21.5, 60.3)
 Friends12.5 (2.6, 32.5)
 Needle exchange19.4 (7.4, 37.3)

Note. CI = confidence interval; trans = transgender or transsexual.

aCheck-all-that-apply item, so totals will not sum to 100%.

bGroup was too small to generate weighted prevalence estimates and confidence intervals.

cBased on subgroup of participants who injected hormones.

Table 3 outlines the characteristics of the 14 nonprescribed hormone users within this study. Similar to overall estimates among Ontario trans people, most of the DIY participants were aged younger than 40 years, and 13 reported having completed at least some college or university. The majority (12 of 14) were on the MTF gender spectrum, and 9 identified as White Canadian, American, or European; the remaining were Aboriginal and East/South/Southeast Asian. Nine of 14 were in the lowest income category. Many were unemployed or receiving disability or social assistance supports, and half reported a history of sex work. All DIY participants used nonmedical sources for hormones, but 1 had also obtained hormones from a family doctor; none were receiving regular blood tests. Finally, 4 were currently injecting hormones; needles or syringes were obtained from multiple sources, including needle exchange programs, doctor’s offices, and friends.

Table

TABLE 3— Characteristics of 14 Nonprescribed Hormone Users Within the Trans PULSE Project: Ontario, 2009–2010

TABLE 3— Characteristics of 14 Nonprescribed Hormone Users Within the Trans PULSE Project: Ontario, 2009–2010

Characteristic DIY 1DIY 2DIY 3DIY 4DIY 5DIY 6DIY 7DIY 8DIY 9DIY 10DIY 11DIY 12DIY 13DIY 14
Demographics
 Gender spectrumMTFMTFMTFMTFMTFMTFMTFMTFMTFMTFMTFMTFFTMFTM
 Age55–6455–6445–5435–4425–3435–4425–3425–3425–3425–3425–3416–2435–4416–24
 Region of residenceMetropolitan TorontoSoutheastern OntarioMetropolitan TorontoSouthwestern OntarioSouth-central OntarioSouthwestern OntarioNorthern OntarioSouthwestern OntarioSouth-central OntarioSouth-central OntarioMetropolitan TorontoSoutheastern OntarioMetropolitan TorontoMissing
 Personal income in past year, Can$≥ 80 00030 000–49 999< 15 00015 000–29 999< 15 00030 000–49 999< 15 000< 15 000< 15 00030 000–49 999< 15 000< 15 000< 15 000< 15 000
Hormone use
 Hormone regimenE, HSAAEP, E, AAE, AAE, AAEP, EE, AAEP, E, AAP, E, AATT
 Current source(s) of hormonesHSHSFRInternetFRInternet, HSHSInternet, FR, HSHSFR, street or strangersRather not sayFR, street or strangersFR, HSFR
Barriers to hormone access
 Had a regular family doctorNoYesYesNoYesYesNoYesYesYesNoNoYesNo
 Employment statusPart-timeFull-timeFull-timeUnemployedUnemployedFull-timeDisability pensionDisability pensionWelfareFull-timeStudent or part-timeStudentDisability pensionWelfare
 Ever done sex work or exchange sexNoNoYesYesNoNoNoNoNoYesYesYesYesYes
 Had coverage for hormonesNoYesNoNoNoNoNot sureNot sureNot sureNot sureNoNot sureYesNo
 Ever denied prescription for hormonesNever triedYesYesNoYesYesNever triedYesNever triedYesYesYesYesYes
 Ever had trans-specific negative experiences with providersNoYesYesNoYesYesYesYesMissingYesYesYesYesMissing

Note. AA = antiandrogen; DIY = “do-it-yourself”; E = estrogen; FR = friend or relative; FTM = female-to-male; HS = herbals or supplements; MTF = male-to-female; P = progesterone; T = testosterone.

With regard to DIY surgeries, 4 MTFs indicated self-performing orchiectomies (removal of testicles) and 1 FTM reported self-performing a mastectomy (data not shown). Among participants on the MTF gender spectrum, a 23-year-old MTF had attempted an orchiectomy, a 34-year-old MTF had completed an orchiectomy when she was aged 23 years, and a 34-year-old MTF had completed an orchiectomy with the help of a nurse at the age of 27 years. Finally, a 51-year-old MTF had performed an orchiectomy on herself at age 46 years, and a 25-year-old FTM had performed a mastectomy on himself at age 22 years. All 5 identified only as White Canadian, American, or European; 4 currently resided in Metropolitan Toronto, had a regular family doctor, and reported currently living with a mental health condition. The eldest DIY participant was an exception; the participant resided in South-Central Ontario, did not have a regular family doctor, and did not report currently living with a mental health condition. Three of the 5 participants currently earned less than Can$15 000; the others earned an annual personal income of greater than Can$40 000.

We examined DIY hormone use and sex-reassignment surgeries among trans people in Ontario, Canada. At the time of the study, 43.0% (95% CI = 34.9, 51.5) were using hormones. Where comparable information was available, the breakdown of hormone use provided in Table 2 was found to be similar to that of other studies.4,7 Among current hormone users, 6.4% (95% CI = 0.8, 9.0) were using hormones obtained from nonmedical sources. Furthermore, about a quarter of all current users had ever taken nonprescribed hormones. This indicates that being unable to access prescribed hormones is a common experience, which may have significant implications for health risks. Like any medication, supervised hormone therapy is considered safe when based on evidence-based protocols2,27 with appropriate follow-up care. However, depending on the individual’s existing medical condition, unsupervised hormone therapy can introduce serious side effects.27 This is an important consideration because of the high proportion of trans people who have used nonprescribed hormones at some point in their lives.

The prevalence of DIY hormone use was relatively low in our study compared with other reports of nonprescribed hormone use.3–7 This may have resulted from low reporting of DIY hormone use, as well as geopolitical or sampling differences. Specifically, existing studies of nonprescribed hormone use were conducted in diverse regions of the United States. Some surveys were administered statewide3,4 whereas others were focused on trans people from urban centers.5–7 In contrast to our study, participants in the US samples were recruited via convenience sampling methods.3–7

There are also differences in the time frames used to inquire about DIY hormone use; for example, some estimates were based on ever,3,4 past-year,5 or current7 use of nonprescribed hormones. Our prevalence of DIY hormone use is most comparable to the latter study,7 as we applied a similar measure of current use. However, there are also key distinctions that reduce comparability; for example, only trans people on the MTF gender spectrum and from New York City were recruited into the latter study,7 whereas our participants spanned the spectrum of gender identities and lived across the province. In general, it is difficult to make a valid comparison of our results with those of others, and to determine the reasons for the wide variability in DIY hormone use because of the broad differences between studies. Nonetheless, it is possible that existing legal protections (though nonexplicit) and better access to medical care in Ontario, including no-fee physician visits, may allow for improved provision of services to trans people compared with the United States. However, it should be noted that among current hormone users, about one quarter were not regularly receiving recommended follow-up care (e.g., blood work), thereby indicating a suboptimal level of care being provided to trans Ontarians.

Several characteristics of the DIY participants are notable. First, half of the 14 (5 MTFs and 2 FTMs) reported being involved in sex work at some point in their lives, although it is not clear how, if at all, this relates to DIY hormone use. It is possible that sex work provided an impetus to start on hormones for the MTF participants, particularly if they were presenting as female at the time. However, it is unclear as to whether hormones would provide an advantage for the FTMs who had engaged in sex work. It is also possible that sex work created a barrier to hormone access. In fact, of the 7 who had a history of sex work, 6 had been denied a prescription for hormones in the past.

Moreover, 8 of the DIY participants had a regular family doctor, 10 had been denied a prescription for hormones in the past, and 3 had never tried to obtain a prescription for hormones. These findings suggest that having a family doctor is not in and of itself indicative of trans people’s hormone needs being met. In addition, 10 of the 14 had trans-specific negative experiences with providers at some point in their lives. Experiencing frequent exposure to transphobia is significantly associated with higher odds of depressive symptomatology among trans people.28,29 Although Canadian protocols exist for the provision of hormonal care by family doctors and specialists,27,30 physicians in Ontario are unlikely to be aware of the existence of these protocols.31 This may contribute to a perception that hormonal treatment of trans individuals is extremely complex, requiring specialist training and beyond the scope of their practice. In fact, virtually no physicians have received training in the administration and monitoring of transition-related hormonal regimens, even in specialties such as endocrinology, where it falls clearly within their purview.31 The preceding phenomenon can be considered a form of informational erasure, which occurs when information is not produced, not incorporated in summary materials such as curricula, or assumed nonexistent, even when it is available.32 This describes the situation in Ontario, where both trans patients32 and their doctors31 concur that trans patients often have to educate and provide information to their physicians on transition-related care issues.

The low-income status of 10 DIY participants also suggests that they may have been unable to afford hormones, and most either did not have insurance coverage (n = 7) or were unsure of whether hormones were covered (n = 5). In the latter case, participants may have been less likely to approach a physician for prescription hormones because of the uncertainty about their insurance coverage. In fact, 2 of the 5 had never tried to obtain a prescription for hormones. The type and extent of hormone coverage provided through disability supports and private insurance may also be unknown to doctors. Because special forms must often be completed by doctors for patients on social assistance or disability supports to receive drug coverage, a lack of knowledge about this or unwillingness to go the extra mile may exacerbate income-related barriers to receiving hormones. In general, hormones should be more readily available, and possibly integrated into primary care settings.

The SOC produced by the World Professional Association for Transgender Health recommend a far more accessible system for hormonal and surgical care.2 Although we have a long way to go, positive steps are being taken in this direction. For example, the Trans Health Connection Project (see http://www.rainbowhealthontario.ca/transhealthconnection) is an important example of the type of initiative that is needed to train health care providers. Implemented in 2011, Trans Health Connection offers in-depth training to teams of primary care providers across Ontario with a curriculum that includes an introduction to social and medical transition; administration of hormones and preventative care, surgery, and postsurgical care; and supporting mental health through counseling and group work. This model is now in its second year and will be formally evaluated. It has the potential to be successfully implemented in jurisdictions across North America, and may eventually play an integral role in improving the availability and quality of primary care services offered to trans individuals. Incorporating information on hormonal therapy into core medical curricula will also be necessary to ensure that appropriate services are provided to those in need of transition-related care.

Finally, 5 DIY participants indicated that they currently received hormones from multiple nontraditional sources, which could be because of their belief that this would accelerate the transition process or concerns related to a potential loss of supply. Although not asked in our survey, other studies have offered the former as an explanation.7 Equally important is the fact that 3 of the 4 DIY participants who injected hormones obtained needles or syringes from needle exchange programs or doctors’ offices. Although the degree to which the needs of trans clients are being met remains unclear, the fact that DIY participants used these services reinforces the need for needle exchange programs and physicians to be flexible in providing gauges of needles that are suitable for intramuscular injections.

Trans people have been denied access to sex-reassignment surgeries for various reasons. At the time of the study, one factor was the excessively stringent approval criteria used by the single clinic in Ontario that approves these procedures, which included a 2-year real-life experience.33 Many trans people are also unable to afford to pay for SRS and related travel costs privately. In Ontario, SRS procedures were de-listed from the OHIP formulary in 1998 without consultation with the College of Physicians and Surgeons of Ontario, and thus outside the established consultative process. This created extreme access difficulties for individuals with limited financial resources; however, funding was reinstated in 2008, mainly a result of sustained lobbying by trans community members and organizations. Of the 5 participants who reported performing a surgical procedure on themselves, 4 had done so during the time in which SRS was de-listed (time frame unknown for the other participant). It is possible that these participants would not have chosen to self-perform surgeries if SRS services had been more accessible. The importance of jurisdictions in improving the availability of SRS must therefore be stressed. There is a need to examine the stringent conditions that have until recently been applied to the process of obtaining approval for publicly funded SRS, and to address the call for more than 1 center servicing the entire province. Similarly, although some hysterectomies and chest reconstructions are performed within Ontario, all genital procedures are performed in the neighboring province of Quebec. This indicates a need for specialized sites in Ontario that offer genital surgeries.

The decision to perform surgery on oneself is serious and potentially dangerous, and may be related to additional factors, such as pre-existing mental health issues. As noted, 4 of the participants who self-performed surgeries reported currently living with a mental health condition. Three had also reported a mental health history, with diagnoses of borderline personality disorder, bipolar disorder, anxiety disorder, major depression, and seasonal affective disorder. One may postulate that the mental health issues contributed to the self-performed surgeries. However, it is possible that the distress of not being able to access SRS services led to or exacerbated the mental health issues. In fact, trans people planning to medically transition but who have not yet begun are more likely to have symptoms consistent with depression than those who have medically transitioned.29 The same distress may have also contributed to the self-performed surgeries, as people with a strong sense of gender dysphoria and lack of access to trans health care can feel desperate, resulting in self-treatment.11,14,15,17 Finally, it is also plausible that self-performing the surgeries led to a mental health diagnosis. However, the times of onset or diagnosis were not available, thus it was not possible to ascertain whether the mental health issues preceded the self-performed surgeries, or vice versa. Regardless, nontreatment of trans patients is associated with worsening psychological outcomes.34

Limitations

This study has limitations worth noting. First, data were self-reported, including information on hormone sources. This could not be validated, although the use of a confidential and self-administered survey may have reduced reporting bias. Second, we were unable to conduct more detailed statistical analyses because of the small number of current nonprescribed hormone users. Third, we characterized current users of nonprescribed hormones. Prevalent cases will by definition overrepresent long-term users and underrepresent short-term users. Thus we may not have captured trans people who were only using nonprescribed hormones on a short-term basis while searching for a doctor who would prescribe hormones. In the future, researchers should consider using a longitudinal study design, which may allow for the identification of a greater number of DIY participants, and examinations of the risk factors and health outcomes associated with nonprescribed hormone use.

Finally, the limitations of our data should also be noted with regard to the methods. In particular, we added a number of seeds several months into the year-long recruitment period. It is therefore possible that recruitments by the initial versus added group of seeds differed because of the time lapse; however, it is not clear whether this would have an impact on the results. Furthermore, we increased the incentives by Can$5 in the last 2 months of recruitment, although we observed no evidence that this contributed to a higher probability of participation. Our population-based estimates should, as always, be interpreted with caution. Nevertheless, our study was based on a large probability sample of trans people that comprised a higher proportion of the general population than in recently completed US Internet studies.35 Moreover, the present study is the first to characterize and examine the extent of nonprescribed hormone use and self-performed surgeries in a Canadian province, and is among only a handful of similar reports published internationally. Given the paucity of research in this area, it is difficult to compare our results to those of other similar studies. We would therefore encourage more systematic research on this topic, particularly in the Canadian context.

Conclusions

We have drawn attention to the considerable numbers of trans people who at some point in their lives have taken hormones without medical supervision, and have shed light on the characteristics of those currently obtaining health care services through unofficial means. Our findings point to directions for further research in Canada, particularly in terms of areas for improvement in the care provided by health care providers. Our study indicates that trans people’s experiences with providers may play a role in their decision to access hormones from nonmedical sources. Efforts should be made to improve access and quality of services provided to trans people, and thereby gradually reduce the levels of fear and mistrust experienced by those seeking care from health care professionals. Providers should therefore be responsive to the needs of trans people, promote a trans-friendly environment in practice settings, become knowledgeable regarding the medical and social needs of trans patients, and not deny services that can be provided without solid evidence of medical risk or inability to consent. Addressing the specific needs of trans people will help ensure that all those requiring transition-related services will receive them from the safest and most appropriate sources, with regular monitoring of their health.

Acknowledgments

This research was supported by an operating grant from the Canadian Institutes of Health Research, Community-Based Research in HIV/AIDS (funding reference 167492).

We would like to acknowledge and remember our coauthor and dear friend, Kyle Scanlon, who passed away in July 2012.

Additional partners in Trans PULSE include the Sherbourne Health Centre (Toronto), The 519 Church Street Community Centre (Toronto), the Ontario HIV Treatment Network, and Rainbow Health Ontario. The authors wish to acknowledge the contributions of the Trans PULSE Steering Committee, the 16 Community Engagement Team members who shaped and promoted the survey, the 85 trans people and 4 allies who contributed to the first phase of the study that informed this survey, and the 433 trans people who shared their experiences through participating in the survey.

Human Participant Protection

This study was approved by the Research Ethics Boards at The University of Western Ontario (London) and Wilfrid Laurier University (Waterloo).

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Nooshin Khobzi Rotondi, PhD, Greta R. Bauer, PhD, MPH, Kyle Scanlon, Matthias Kaay, MSW, RSW, Robb Travers, PhD, and Anna Travers, MSWAt the time of the writing, Nooshin Khobzi Rotondi was with the Health Systems and Health Equity Research Group, Social and Epidemiological Research Department, Centre for Addiction and Mental Health, Toronto, Ontario. Greta R. Bauer is with the Department of Epidemiology and Biostatistics, The University of Western Ontario, London, Ontario. At the time of the study, Kyle Scanlon was with the 519 Church Street Community Centre, Toronto. Matthias Kaay is with the Addictions Program, Centre for Addiction and Mental Health. Robb Travers is with the Department of Psychology, Wilfrid Laurier University, Waterloo, Ontario. Anna Travers is with Rainbow Health Ontario, Toronto. “Nonprescribed Hormone Use and Self-Performed Surgeries: “Do-It-Yourself” Transitions in Transgender Communities in Ontario, Canada”, American Journal of Public Health 103, no. 10 (October 1, 2013): pp. 1830-1836.

https://doi.org/10.2105/AJPH.2013.301348

PMID: 23948009