Hormone use among Nepali transgender women: a qualitative study

Health and well-being of transgender individuals in Nepal

Over the past decades, Nepal has witnessed significant legal reforms that affirm rights of its sexual and gender minority (SGM) populations including lesbian, gay, bisexual and transgender. The new Constitution of Nepal impressively recognised the rights of SGM as fundamental.9 Nepal acknowledges its transgender community by allowing a third category of ‘others’ (meaning gender other than male or female) on passports, citizenship certificates, electoral rolls and immigration forms. In addition, the Nepal Health Policy (2014) and other strategic documents such as the Nepal Health Sector Strategy 2016–2020 have enshrined several rights for SGM.10 11 Yet, trans individuals in Nepal are often stigmatised or discriminated against while accessing health and social care services. Healthcare providers are poorly trained on issues of transgender.12 Furthermore, since society is generally conservative and condemns sexual orientation other than heterosexuality, it can be difficult for trans people to seek public services13 as they fear discrimination.12

The general health of transgender people is generally an under-research area.1 14 Until recently, most research on transgender populations in Nepal or other South Asian countries has focused on HIV, sexual behaviour and mental health, largely due to the disproportionate prevalence of HIV in transgender individuals.6 It has been estimated that transgender individuals in low-income and middle-income countries (LMICs) are 50 times more likely to be infected with HIV than other adults of reproductive age.15 This risk is also mirrored in the recent Integrated Biological and Behavioural Survey (IBBS) of Nepal which reported a higher HIV prevalence (11.5%) in transgender individuals than other key populations such as injecting drug users, men who have sex with men (MSM) and sex workers.16 Similarly, a study with 232 Nepali trans people found that one-third had sexual intercourse with more than one sex partner per day.17 Utilisation of HIV Testing and Counselling services by Nepal’s transgender population is also poor.18

Few studies report on sexual-orientation-based discrimination in public places experienced by Nepali trans individuals. For example, of the 139 transgender participants included in the Nepali IBBS study, 63% experienced discrimination on the street or in parks. About one-third (30%) experienced similar problems while seeking medical care.16 Studies also documented that compared with MSM, a higher proportion of transgender individuals in Nepal experiences suicidal ideation (39.8% vs 21.3%) or attempts suicide (15.3% vs 6.4%),19 while in the 2018 IBBS study, suicidal ideation among this group was as high as 41.7%.16 Global evidence suggests that transgender individuals have a higher prevalence of mental health problems.1 20–23 One US study, for example, with 230 transgender women, showed a high depression rate (63% had Center for Epidemiological Studies Depression (CESD) 20 or higher).21 Anxiety levels are also commonly higher than in the general population, a systematic review reported prevalence rates in transgender populations ranging from 17% to 68%.24

To the best of our knowledge, none of the studies have examined the mental health status of Nepali transgender individuals using validated tools. In addition, tobacco and alcohol consumption are also widespread in the Nepali transgender population.17

Hormone therapy by Nepali transgender women

Transgender women, also known as trans women, may use different therapies to medically affirm their gender identity through feminisation of their appearance. Hormone therapy, injecting silicone, gender-affirmation surgery, breast augmentation, mechanical therapy for body or facial hair, and voice therapy are thought to be common.25–27 However, due to the high costs especially for gender-affirming surgery and the experience of healthcare-related stigma, many transgender people in LMICs cannot or would not seek gender-affirming care.28–30

Hormone therapy induces the characteristics of the affirmed gender and reduces the characteristics of an individual’s birth sex. Two classes of medications are most commonly used by trans women: (1) oestrogen therapies and (2) androgen-lowering hormone therapies. This is often in combination with progesterone therapies as a secondary agent to lower testosterone concentrations.31 For trans women, feminising treatments usually involve the use of oestrogen and an androgen blocker.32

The number of people using cross-sex hormone therapy worldwide has risen over the years.33 In Asia, studies in Thailand report 73%–94% hormone use among trans women.2 34 35 The wider availability of hormones without prescription has most likely also resulted in an increased use in this population. In Nepal, ‘hormones’ are classified as a ‘b’ category medicine only available on prescription. This is in line with the framework developed by the Endocrine Society and the World Professional Association for Transgender Health (WPATH).36 In reality, only about one in five transgender individuals in Nepal were advised by a doctor to use hormones, while the overwhelming majority relied on non-medical advice.16 In practice, hormones are easily available from private pharmacists in Nepal without prescription.37

However, there is a dearth of research on the experience of hormone use or other therapies among transgender individuals in Nepal. Studies from other geographical settings on hormone use by transgender individuals have yielded mixed outcomes. For example, a study in France found a positive effect of hormone therapy on their quality of life (QoL).38 However, such QoL studies do not exist in Nepal. Emerging evidence shows that hormone use is associated with numerous health risks such as venous thromboembolism, elevated liver enzymes, gallstones, decrease in haemoglobin, low sexual desire, reduction in facial/body hair, increased rate of myocardial infarction or depression.31 39 40 Where hormones are difficult to access with a prescription, transgender population seek and use hormones in less safe ways. For example, in Chicago, 71% of trans women reported obtaining hormones from a non-medical source in the past year41; similarly, 58% of trans women in Virginia reported ever having used non-prescribed hormones.42 Although the literature on needle sharing in trans populations is sparse, sharing needles to inject hormones could increase the risk of acquiring infectious diseases.43 The degree of interactions between hormones and antiretroviral therapy in the transgender population is another area of research that currently lacks sufficient evidence.32

Media reports suggest that trans women in Nepal also use hormones bought in private pharmacies.44 45 There is poor regulation and monitoring of many drugs dispensed through private pharmacies, which make them easily available without a prescription, but there is a notable lack of published research on hormone use.12 Evidence on what type of hormones they take, how these are consumed (oral or injection), who prescribes them and what are the side effects experienced by transgender individuals from these hormones are still not known. The IBBS survey of Nepal16 reported that about a quarter (24%; 33 of 139 participants) of transgender individual were using hormones, mostly as their own choice or suggested by peers. The self-administration of hormones may result in a considerable health risk to this subgroup in the population. Although the transgender population constitutes a small proportion of the total population, it is imperative to understand their healthcare needs and their risk-taking behaviours to achieve universal health coverage as envisioned in the Sustainable Development Goals. Against this backdrop, this study explored (1) hormone use among trans women, (2) types of hormones used and how they are consumed, and (3) side effects experienced after hormone use. Findings from this study may help to develop health promotion strategies that could improve their access to healthcare and enhance their experiences of using health services.

Data collection

In September 2016 to March 2017, we carried out a qualitative study comprising eight focus group discussions (FGDs) with self-identified trans women aged 18 years and older. Participants did not have to be on hormones at the time of the study. To capture diverse views, the FGDs were carried out in four of the seven different provinces (table 1). The research team selected these provinces purposively to represent the different geographical areas (eg, hill, terai, urban, rural) of the country. The closest to a national record is data published in 2019 by Poudel and colleagues,46 who estimated 18 704 to 24 216 transgender individuals for 2016, without specifying the proportion of trans women or men. The number of participants in the FGDs ranged from seven to nine persons. Additionally, participants who did not want to share their views in a group setting were offered an in-depth interview, resulting in three in-depth interviews. We also organised six key informant interviews (KIIs) with relevant stakeholders, including representatives working in non-governmental organisations (NGOs) supporting the SGM population in Nepal, a district health officer, an HIV programme coordinator and two KIIs were with trans people.

We invited potential research participants using a convenience sampling strategy in close collaboration with an NGO called Blue Diamond Society (BDS), which is working for the SGM population in Nepal. BDS invited participants for the FGDs through its network of regional coordinators. The coordinators and local outreach workers invited local trans women through word of mouth. Due to the stigma attached to being transgender, other more public ways of inviting participants were deemed to be inappropriate. All FGDs and interviews were conducted in Nepali by PRR and SRN who are native Nepali speakers and experienced qualitative researchers on sensitive health issues. Interviews took place in a location agreed with the participants, usually NGO offices. With the prior permission from the participants, the FGDs and interviews were audio recorded. The researchers made short field notes of non-verbal behaviour during the qualitative data collection. Most of our FGDs lasted between 1 and 2 hours, whereas interviews took between 45 min and 1 hour.

FGD and interview facilitation tools

Based on the literature, the research team, in collaboration with key stakeholders, drafted a discussion guide47 to facilitate FGDs48 and interviews.49 The FGD guide included knowledge of hormones, first experience with hormone, administration of hormones, source of injection paraphernalia and who injects, experience of side effects and its management (copy available from first author on request). Prior to the discussion, demographic characteristics such as age, education, ethnicity, employment and duration of hormone use were collected from each FGD participant. The questions included in the guide were pretested in a similar FGD50 with trans women in Kathmandu. This pilot resulted in minor changes to the final discussion guides, but as these were not very different from the pilot, its findings were included in our analysis. The FGD guide was used in all FGDs as a starting point and the interview guide was adjusted for each KII depending on their background. Thus, the KII guideline included questions around hormone use, the uptake of healthcare services, specific programme targeting these population and programmatic recommendations.

Data organisation and analysis

We transcribed51 the original recordings before translation into English by a Nepali social scientist, who was trained for this study. PRR and SRN (both native Nepali speakers) independently reviewed the transcribing and translating. Transcripts were crossed checked with original recordings. Any disagreements were discussed in detail between PRR and SRN for appropriate translation. Each transcript had a cover note describing the interviews, settings, how the discussion had been any, any differences from other interviews, particular incidents, environments and a reflection on the issues identified in the session. The data were then organised through NVivo V.11.52 As part of the thematic analysis, PRR read and coded all transcripts and ERvT and SRN did the same for half of the transcripts each and acted as second independent coders. A thematic approach was followed for data analysis.53 In the spirit of qualitative research, any differences between the first and the second coder were discussed in the team until consensus was reached. Relevant quotes are presented to illustrate the key themes.54 We followed Consolidated criteria for Reporting Qualitative research (COREQ) checklist to report FGD and interview data.55

Ethical consideration

Our study was conducted in compliance with human rights and ethical standards required from studies on sensitive issues.56 Written informed consent was obtained privately from all research participants prior to the FGDs and interviews. Through an information sheet in Nepali, participants were provided with enough information about the study purpose and procedure, voluntary participation, confidentiality, risk and benefits to the participants, complaint procedure and so on. Participants’ travel costs were reimbursed, but no financial incentives were provided.

Patient public involvement

Patient public involvement is a relatively new concept in Nepal. However, we involved lay experts (=trans women) and relevant key stakeholders from the conceptualisation of this study. Our data collection tools and information sheet were piloted through an FGD with seven participants to ensure that they are inclusive and comprehensive. We will also engage them in disseminating results of this study, particularly their contribution while developing research factsheets in plain language and communicating them to transgender individuals will be very valuable.

Characteristics of participants

Most FGD participants were young (mean age 23.06±3.9 years) and the majority (55%) completed grade 6 to high school level. About one-third had completed secondary education, in Nepal this is called School Leaving Certificate (equivalent of high school in the USA or secondary school in the UK). In terms of ethnicity, Brahmin/Chhetri and Janajati groups represented 82% of our FGD sample, and Dalits represented 5%. This suggests an under-representation of participants from Dalit communities in our study compared with the total population in the latest census.57 About 39% (n=24) lived with friends; 42% (n=26) worked in restaurants/bars and 40% (n=25) had been using hormones for 1 to 3 years (table 2). Although sex and sexuality are considered as taboo subjects and not discussed openly in most Nepali families, our participants were actively engaged during the research. More people were invited than attended on the day, but none withdrew during the FGDs or interviews.

We identified five partly overlapping themes: (1) reasons and motivations for hormone use; (2) accessibility and use of hormones; (3) side effects; (4) participants’ health-seeking behaviours overlapping and (5) discontinuation of hormone use. Each theme is discussed below and is supported and illustrated by relevant quotes.

Reasons and motivations for hormone use

The overarching reason for using hormones was to affirm to a more feminine gender. Many wanted to look female. In the following quote, ‘Diane’ refers to contraceptive birth control pills to make one’s skin and hair less greasy:

…I heard about it [=hormone] from my friends. First, I searched on YouTube about how a person whose appearance is like a boy can become a girl …. There are both good and bad effects. But since we live only once we all want to be beautiful and fairer, isn’t it? And then I started using ‘Diane’. That is from Thailand. (FGD1, Kathmandu)

Almost all our FGD participants stated that ‘friends’ are the main sources of information about hormones, as the quote above already suggested. Some participants, particularly from Kathmandu, had acquired information about hormones through the internet, mainly YouTube. A few participants also mentioned organisations working for transgender populations (without naming them explicitly) as a source of information on hormones.

Non-prescribed hormone use appears to be common and most participants started using hormones after encouragement from their friends:

We do [=use hormones] on the basis of friends… Friends said that breasts will increase if we use this. (In-depth interview 3, Kathmandu)

The key motive for hormone use was to get a feminine look. Most participants believed that hormones help them change their physical appearance. Some started using hormones only after they saw positive changes to their friends, as exemplified by this quote:

First of all, I saw my friends using it [=hormone]. After seeing good effects on them, I also wanted to use it … I am still using it. I used ‘Diane’. (FGD3, Kathmandu)

Friends did not have to be close by, or even in Nepal, some referred to friends abroad:

I have many friends in India. They are used to taking hormone. After using hormone, this [=pointing to her breast] increased. Then I also started having the desire to use hormone. Then my friend said, “I know about this [=hormone], you can get it here.” Then that friend took me and I bought it. (In-depth interview 2, Kathmandu)

Access to hormone, types, intake and doses

Hormones were commonly taken as injections or orally. Some participants named several brands/trade names of hormone (pills and injectable); however, most were unware of the types of hormones they were taking. One participant stated:

…I do not know the name of hormone. My friends bring them [=hormones] for me. I do not normally look at the name. (In-depth interview 1, Kathmandu)

When asked about the places to buy/access these hormones, it was found that local pharmacies were the popular choice for most. Accessing hormones from NGOs was also reported but participants did not want to share about NGOs in detail. Some even travelled abroad to buy these hormones, with Thailand as the preferred destination. One FGD participant said, while speaking about visiting pharmacists in Thailand, when we ask for a specific hormone by name they simply sell it to us.

There was agreement among participants that hormones from abroad are of a better quality than the ones available locally. There was a notion among our participants that hormones from overseas acted faster; therefore, many got friends to buy these when they travelled overseas:

…it [=hormone from Bangkok] makes our body soft, veins are not visible, our body feels soft like those of girls. The medicine that we get here also works but takes longer to work. (FGD5, Kathmandu)

Or

Chest development is faster by the medicine from Bangkok than here. (FGD1, Kathmandu).

Hormones from abroad were also considered as creating effects that lasted longer:

We keep on bringing from there [=overseas] till we become beautiful. [Laughing] We bring hormones that will be sufficient for many years at a time. (FGD3, Kathmandu)

Our findings suggest that trans women in Nepal use hormone in an improper way, including using too many hormones at the same time for the sake of instant outcomes. They seemed not to follow guidance regarding recommended doses, for example, one participant stated:

… women who use hormone for family planning take one hormonal tablet in a day while TG [=transgender] uses two in the morning and two in the evening which will definitely have an effect. So, you have to provide information about this [=hormone]. (FGD8, Banke)

Without a proper prescription, self-medication leads to ‘common sense decisions’ about the timing and dose of the hormone:

We used to take two tablets in the morning and two in the evening when our chests were not large. But now, since our chest has increased and as we felt that it has some disadvantages also then I have started taking just one in a day. (FGD6, Kaski)

While stigma and fear of the hormones being discovered in one’s belongings, some did not take hormone with them when visiting family (especially in rural areas):

I do not carry hormone with me when I go home… I do not take it when I stay at home. I take it again after I come here. (FGD7, Sunsari)

Self-reported side effects

Frequently reported side effects of hormones were headache, decreased sexual desire, spots (acne) on cheeks and forehead, lost appetite, chest pain, vomiting, weight gain, shortness of breath, itchy, dizziness, sleepy, feeling weak, feeling angry, hair falling out, gain in thigh and buttock muscles. Most argued that these hormones/chemicals have no benefits to their health, for example, one FGD participant said:

There is definitely no benefit. This is just for beauty. (FGD2, Kathmandu)

Some participants argued that hormone use can cause a range of serious diseases, such as diabetes, cancers, high blood pressure and high cholesterol; therefore, it can impact on their mental health well-being.

… we can start thinking that we are victims of depression. Hormone makes us monotonous, we do not like to work, we do not feel sleepy but sometimes we feel too sleepy, we feel tired, we like to eat too much, we like to sleep all the time, body becomes hot, sometimes we feel too hot and sometimes we feel too cold. (FGD6, Kaski)

This was also reflected in a different FGD:

We feel very weak … feels like vomiting, tiredness, spots on face and there is risk of diabetes, paralysis, blood cancer and breast cancer in the long run. (FGD2, Kathmandu)

Utilisation of healthcare services

Utilisation of healthcare services to explore about hormones or seek help for side effects of hormone use was very poor. Although most visited private pharmacies for injecting hormones, discussion around types of hormones used, side effects or other health issues was very poor. The decision to start using oral pills seems to be largely based on encouragements from their peers.

Talking about injectable, we go to medical [=pharmacy] and get injected …but we did not take hormone [=oral pills] by consulting doctors; we took it by following our friends. (FGD1, Kathmandu)

Almost all participants noted that they feel shy and generally hesitate to discuss these matters with doctors or nurses. Lack of user-friendly services at the healthcare centres was frequently reported as a barrier:

It is very shameful when we have to go for check-up. We rather die than going for a check-up. There are females [=healthcare care worker] and we have a lot of problems. (FGD4, Kathmandu)

… No, I did not go anywhere. If I do check-up and if they show serious problem then … I had gone to teaching hospital once. I had to open my clothes for video x-ray. There were boys also. I felt very shy thinking that my breasts will be on display. (Participant, FGD3, Kathmandu)

Some stressed that there are no specialist healthcare professionals on transgender health in Nepal.

… there are no any specialists here [=in Nepal]. When we go to Bangkok a number of times, somehow specialists are there. There are shops and we get injectable there and return back. (FGD1, Kathmandu)

However, there were a few participants who had consulted a health professional when they had problems:

I explained my problem and she recommended something. After that nothing happened to me [=i.e. there was no reaction to be seen]. Then I asked an older friend and started using ‘Sunaulo Gulab’ [=an oral contraceptive pill in Nepal] by myself. After that I became too weak again and I went to the endocrinologist of Bir Hospital and did some tests. And then I became well. (FGD1, Kathmandu)

Discontinuation of hormone use

Participants have no any fixed plan or schedule to stop using hormones. The decision to discontinue hormone use is often made abruptly by users. Participants reported that having side effects (experienced or perceived) are the main reasons for discontinuation of hormones.

Actually, I used to take hormone before as well when I used to work in the fancy store. I used to go as a boy by wearing a jacket. It [=breast] was not too large. It was this much [showing with hand]. I used to feel shy though it [=breast] was small, so I used to wear big jackets and go for work. Then I came here and some said that hormone causes this and some said hormone causes that so I stopped using hormone. Then breasts also started decreasing as I stopped using hormone. (FGD7, Sunsari)

Others reacted to the views and experiences of people like them:

… I used that [=hormone] for about 2–3 years. Then people said that hormone caused sugar [=diabetes], thyroid and others. Also, one of my older friends who has been using hormone for long suffered from diabetes, thyroid problems, so I stopped using that [=hormone]. (In-depth Interview 2, Kathmandu)

Some had to discontinue hormone use temporarily when their stocks ran out. This was particularly challenging to those users who bought hormones overseas. Discontinuation during home visit was also reported.

… I had left using hormone in the middle but again [=name removed] brought hormone from overseas some days ago, so I started using that. That [=hormone] has finished now and there was no one who would go Thailand. (FGD4, Kathmandu)

Others mentioned not taking hormones when or they are ill:

We leave taking it [=hormone] when we are not well and we use it when we are well. (FGD8, Banke)

Strengths and limitations

Despite Nepal being a conservative country where sex and sexuality are not openly discussed, most participants actively engaged during the FGDs and interviews. Consequently, our data are rich and include diverse views of our participants. Offering in-depth interviews to those participants who were not willing to participate in the FGD also made our data inclusive. As we invited the participants through a local NGO that works for transgender community, we acknowledge that our participants may be more exposed to health and social issues than the rest of transgender individuals. We might have also excluded transgender people who did not want to expose their status to this organisation’s network. Although we conducted our FGDs in different geographical locations, we may have missed the views of trans women elsewhere in Nepal who have different sociocultural or behavioural characteristics than our participants, but we managed to cover all major ethnic groups. Although we invited participants regardless of their previous exposure to hormones, all had used or were using some types of hormones. Finally, all researchers were male in this study, which may have influenced the data collection.