Trans People Are Self-Medicating By Buying Hormones Online

"It was always going to be the case that if they couldn't help me then I was going to have to help myself."

Zoë is a 48-year-old lecturer at the Open University based in Milton Keynes. She came out as a trans woman to her friends, family and colleagues about three years ago, endeavouring to start her medical transition as soon as she could. But a combination of institutional barriers, increasingly long wait times and transphobia from primary care staff means that Zoë has yet to access cross-sex hormone treatment in the UK through the correct routes. Instead, like many other trans and non binary people across the country, she self-medicates her hormones (in her case, oestrogen and anti-androgens), buying them off-prescription through online pharmacies.

Commonly prescribed to cisgender women to relieve the symptoms of the menopause, hormone therapy is also a fundamental part of transitioning for many trans and non binary people. Taking the hormones of the gender you identify with and/or suppressing your current hormone levels enables your body to change and develop secondary sex characteristics that correspond with your gender. If you are feminising, like Zoë, that can mean less muscle, less facial and body hair, more fat on your hips and an increase in breast size. If you're masculinising, it means the opposite.

According to NHS guidelines, "the aim of hormone therapy is to make you more comfortable with yourself, both in terms of physical appearance and how you feel. These hormones start the process of changing your body into one that is more female or more male, depending on your gender identity. They usually need to be taken indefinitely, even if you have genital reconstructive surgery."

If you are trans in the UK, you cannot access hormone therapy unless you have been referred to the gender identity clinic (GIC) and diagnosed with gender dysphoria (the discomfort or distress a person feels when their assigned sex doesn't match their gender identity). However, access to that specialised care is extremely poorly resourced. According to Kirrin Medcalf, head of trans inclusion at Stonewall, it should take a maximum of 18 weeks to get a first appointment at a GIC but "figures show that the reality is leaving people waiting much longer, up to three years." Research published by the BBC in January found that more than 13,500 trans and non binary adults are on waiting lists for gender identity clinics and that there has been a 40% increase in referrals over the past four years. Dr Jane Hamlin from the Beaumont Society, the longest established support group in the UK for transgender people and their families, echoes this. The wait times are "heartbreaking for people on those waiting lists. It takes a great deal of courage to accept that one is trans and that this is not just a phase that one will grow out of, or it will somehow go away."

The struggle begins with getting referred at all. When Zoë spoke to her GP for the first time, "he refused to process my referral forms and refused to refer me to a GIC himself. To tell you just how out of date his knowledge base was, he said, 'Oh no, I've dealt with transsexuals in the past and we've always referred to the psychiatric unit of the local hospital so that's what I'm going to do. They can make a decision as to whether or not they have to refer you'."

Dr Tara Suchak is a consultant at 56 Dean Street, part of the Chelsea and Westminster NHS Foundation Trust, which has been running a weekly transgender sexual health clinic for nearly eight years. "We see literally hundreds and hundreds of patients who are self-medicating," she says, confirming that Zoë's experience is not uncommon. "Trans people have very, very poor experiences with healthcare generally, so they often will not access healthcare... A lot of trans patients will not be registered to a GP and even when they [are], the GP then doesn't refer them on. We've had patients where they've had to register at five different GPs before a GP has referred them to the gender clinic."

Once a referral has been made, primary care providers and GPs are meant to provide what is known as bridging treatment, where they prescribe hormones and issue regular blood tests to sustain the patient during the long wait. But that, too, can be difficult to access. Zoë asked her GP for bridging treatment when she was finally referred by the psychiatric unit and learned that the wait time was going to be at least two years, not the one year she'd initially been told. Her request was denied.

All of which leads some trans people to buy their hormones online. Simply put, Zoë felt she had no other choice. "It’s one thing to socially transition – I can alter my wardrobe, work on my voice and update my legal name – but if my body doesn’t change, then strangers who see me out and about probably won't perceive me as my actual gender. And the thought of me sitting there waiting four or five years to even begin the process of medical transition… I don’t think I could do that. Nor should anyone have to."

Buying medication online is unpredictable at best and not a decision that is made lightly. Zoë used both accredited and non-accredited online resources (including subreddits, Discords and online journals) to research the transition process, and referred to the World Professional Association for Transgender Health (WPATH) guidelines to form her hormone treatment plan, eventually deciding to start on the most conservative recommended dose of Progynova (a common oral formulation of oestrogen) and spironolactone (an anti-androgen).

Buying medication online without a prescription is fraught with risk, and the NHS explicitly advises against it as it is "potentially unsafe". But ultimately, Zoë made the decision to go ahead with this course as she felt she "was in good health and would monitor any side effects" (such as the risk of hyperkalemia (too much potassium) from spironolactone). Zoë bought from somewhere she believed she could trust using a credit card, so that at least if the product didn't arrive she could claim the money back. She believes she took every precaution to check the legitimacy of the medication she was buying: going onto the manufacturers' websites, cross-checking packaging and messaging to make sure they matched, which they did.

Zoë was also able to get some bridging treatment through her GP surgery in the form of regular blood tests to make sure that what she is taking is actually working and, more importantly, not harming her. But this treatment was hard for her to access – after struggling with her local surgery's practice manager, who refused to speak with her and let her change GPs, she managed to get through by gaming the system. "The only way I've gotten any traction out of the NHS is by phoning up, pretending I just need an appointment for the day for a random reason, and saying it's personal. I'd ask for a female GP at my surgery and then go in and just plead my case with them and say, 'Look, I know you're not my assigned GP but he is blocking my treatment. Can you do anything?' It's been like that every step of the way. Every time I thought, Oh this will finally work out, finally maybe this step will work, it hasn't." Fortunately, this pleading of her case worked, and two female GPs are working with her to get quarterly blood tests while she self-medicates.

While blood testing is vital for monitoring hormone levels, there are other risks to be mindful of. Hormones come in several forms (oral, patches and injectables) and Tara says that oral forms carry the most risks because they're cheap and easy for patients to get their hands on. This makes them much more susceptible to tampering and means that customers could take more than the recommended dose, no matter how careful they are. And side effects can be very impactful. Even if the medication is what it claims to be, Tara emphasises that you can definitely take too much. "If you were to take too much testosterone it can affect your liver, it can affect the size of your red blood cells, that puts you at an increased risk of stroke. If you're taking too much oestrogen, you're at risk of stroke, blood clot, heart disease. So people may not feel anything themselves but their body function could be affected to a huge extent. I have certainly seen somebody who had a stroke and that was because I'm sure they took too much oestrogen."

The safest path for trans people who are waiting (and waiting, and waiting) to be seen is to practise patience and follow the processes in place. But when those processes are flawed, this can come with so much suffering, as the waiting times continue to increase. As it stands, an appointment at a GIC is a constantly moving target, and Zoë doubts she'll get her appointment before her 50th birthday. "People just don't realise how bad it really is."

This has only been compounded by the coronavirus crisis. As Dazed Beauty reports, the global pandemic has made access to hormones, especially testosterone, far more complicated. Luckily in Zoë's case, the only immediate effect has been accessing her quarterly blood tests, which are on indefinite hold. "To be fair, it’s not the case that I’ve asked and been denied them, but rather that I do not feel comfortable asking an already overloaded NHS to schedule my bloods when in all likelihood my T & E levels are still roughly where they were the last time I was tested, back in mid December (as I haven’t changed my HRT regimen in the interim). I’d rather the nurses focus on those who may be more immediately affected by the coronavirus."

Her medication supplies should last through the summer but after that she enters what she calls 'danger territory'. "I hope to restock before the autumn. My only nagging worry there is that the UK might change its rules about what citizens may import, as of course I’m forced to obtain my medication from abroad for now. I certainly don’t see any chance that my GIC appointment will be moved up in light of current events, so I’m now even more sure than I was before that I won’t get seen before I’m 50."

Happily, some progress is being made. 56 Dean Street has been aware of the struggle to access treatment and medication for years, doing whatever it can to improve the situation by providing advice, support and blood tests. It wants to go further and recently approached NHS England for support in prescribing hormones in a safe fashion until patients can be seen by the GIC. "After lots of discussions, NHS England has awarded us a contract to open a pilot gender clinic with strict inclusion criteria later in the year," Tara tells Refinery29. "The NHS is very, very aware of this problem and they wanted to rectify it so, later in the year, we will be the first new gender clinic in England for decades. A different type of model, more sexual health model than a psychiatric model."

Yet while there are structural improvements to accommodate demand on a local level, more pressing changes are needed among GPs and primary care providers. This comes in the form of better education about the NHS guidelines and, vitally, understanding the importance of bridging treatment. GPs should be prescribing hormones until the patient gets seen by a gender clinic but most of them won't. Tara thinks the reluctance comes from fear. "They're not doing it out of badness or discrimination, I think they just don't know what to do. I think there isn't a lot of guidance in the UK on hormone prescribing and hormone monitoring."

The will to reduce harm will only come with better education, better training and better knowledge of what bridging treatment entails. While there is a lot of reliable information and community support to be found online, there is always the risk of misinformation. It is infinitely safer for trans and non binary people to be treated by medical professionals. That will only be an option for all when trans and non binary people feel they can access the healthcare they need without fear of discrimination or lack of support.