‘It’s Hell’ – 3 Trans People on the NHS Crisis in Gender-Affirming Surgery

Long before the pandemic, trans healthcare in the UK was already in a state of crisis. There are over 13,500 people in England alone trapped on waiting lists for treatment, with many instead turning to private doctors and unregulated online providers for medication. 

For trans masculine and nonbinary people awaiting gender affirmation surgery – specifically bottom or lower surgery to construct a penis – the wait has become even more torturous. In March 2021, the NHS had quietly stopped all bottom surgery due to a contractual issue with the UK’s sole provider of the operation, St Peters Andrology Centre. 

In September 2021, another hospital stepped up to take over – but the damage was already done. Building a penis is a complicated process that usually involves three stages and multiple surgeries, in which surgeons create a penis out of existing genital tissue – known as metoidioplasty or meta – or skin grafts from other parts of the body (AKA phalloplasty).

Surgeries are due to resume in December, but the catastrophic disruption in treatment caused the considerable waiting list to balloon even further. Lobbying group TransActual UK estimates that there are hundreds of patients who spent the intervening months in distress and anxiety, despite some of them already being in the middle of their bottom surgery journey and others who had spent years in pain waiting for repairs to complications. 

Not all gender non-conforming people opt for surgery. As s.e. smith writes for VICE: “Some don't feel that bottom surgery is necessary for them; there is no single right way to do gender, and surgical procedures aren't required to affirm someone's masculinity. Others opt to wait for a variety of reasons, from worries about costs to concerns about surgical outcomes.”

But those who do decide to undergo bottom surgery speak of its lifesaving importance in alleviating their own gender dysphoria. As Jack Furlong, a 24-year old trans man, puts it: “This surgery isn't just about having a penis, it's more than that [...] I want to look in the mirror and feel whole in my own body.”

For people like Jack, the procedure is a “matter of life and death” – which makes the protracted wait even more painful. According to TransActual UK, it would take at least three years and eight months to clear the current waiting list alone. VICE spoke to three trans people in the UK about their bottom surgery journey and how the waiting list has affected their transition.

VICE: When was your first appointment with the NHS about bottom surgery? And how long have you been waiting?
Jack Furlong: It's been three years since the initial first stage and four years since the consultation. I’m currently at stage one of the ALT phalloplasty lower surgery [in which tissue is taken from the anterolateral thigh flap for the procedure]. They told me they’d taken too much fat from my leg, which left a large dent in my left leg. This also resulted in having to leave the phallus open, due to it being too fat to close. They said it would heal by itself and all that would need to happen was to keep the wound clean and elevated. 

I woke up one morning and noticed bleeding at a suture. My dad rushed me to the closest hospital, where they weren't sure what to do. They were shocked how open the wound was and they didn't want to intervene because it was a specialist surgery. We contacted the London hospital and were told I should have been rushed down immediately, so we got in the car and my dad drove 200+ miles to the London hospital. I was in pain, bleeding and having to keep the phallus at a 30-degree angle, all whilst feeling very unwell due to the infection.

At the hospital, they weren't sure what was the best thing to do – there was talk of suturing the phallus to my stomach and trying stage one again, or trying to take grafts from elsewhere, but there were fears the skin would die. I’m now awaiting a repair surgery as well as removing fat before I have stage two. 

Could you tell us how this specific type of surgery affects your life?
I still feel like a man regardless of having completed lower surgery, but sometimes I feel people look at me lesser or unequal to cis men. One big thing I've always wanted to experience is intimacy between my partner. We both crave that closeness between each other, that I can’t give her. It's not a case of just wanting to have sex, it's a case of wanting to feel close to her intimately, sharing something we wouldn't share with anyone else. It's one of the reasons I chose phalloplasty over meta, because I wanted to experience sex and the ability to urinate standing up without the paranoia of using stalls and thinking cis men will know I'm peeing sitting down.

How do you feel about all this waiting?
My mental health has been affected massively. I try my hardest not to think about everything going on, but it's hard not to when I shower or get changed and I have to see what I am left with. The more I'm reminded of what I am left with, the more I struggle with the worry that I will never feel whole, that I’ll never be in my eyes complete.

My relationship is affected – we bicker and the strain is a lot. It’s a lot of stress on someone who has never experienced something like this. Seeing me in a critical state after the first stage and worrying if it’s going to happen again was really difficult [for them]. The waiting game is what’s taking its toll. I'm not able to work, I can't start a career due to uncertainty of surgery dates, as well as possible complications and healing time.

Has the St Peters situation had an impact on your wait, too? 
It has definitely affected the wait and given them a reason to say they have delays. But what I can't understand is why it has taken so long. I was given an initial surgery date for repair but that was cancelled due to the medication I was taking in 2019. They said I would most likely have a new date the week after, but I heard nothing. Back in 2017, 2018, I was told all my surgeries would be completed within a year. The contract and pandemic should never have even been a problem that impacted my surgery waiting time.

What are you doing to cope while you wait?
I play music and love to perform, write songs and record. I hope to one day break into the industry and be a positive role model for someone. Even though this bad stuff has happened with the surgery, it hasn't stopped the good – I’m getting recognition for my music and I want people to know it’s possible to still be you and to have the best life, regardless of the mistakes others have made. 

Has the wait changed how you feel about getting the surgery?
Absolutely not! This surgery means so much to me – it’s about my confidence, me feeling whole in myself and finally sharing moments with my partner. This surgery isn't just about having a penis, it's more than that. It opens up new avenues for me; I want to look in the mirror and feel whole in my own body.

What would you like cis people to know about transitioning?
I want cis people to understand this isn't a joke. Surgery isn't cosmetic – it’s a matter of life and death for some people, the same goes for hormones. We are equal, we have the right to live our lives without the daily torment – negative attitudes and comments, regardless of their right to free speech, really affect people. 

VICE: Could you talk us through your current situation with lower surgery?
Ishmael Johnson: I got my surgery stage one of phallo in December 2018. In January, I developed a fistula [in which the body develops an abnormal connection between two organs] which lasted until about May. I'm hoping to get the hysterectomy and the vaginectomy where they’ll remove all the organs from the inside. They're meant to connect the urethra so I can pee standing up, add testicles and shape the head. They could do all that before stage two, but first they need to make the [fistula] repair. The surgeon said it was an easy task but it just still hasn’t happened. The next thing I heard was to be ready to go into stage two when these repairs would be done by 2020. Obviously, lockdown hit and I last saw someone in August 2020, who said that they are limited to their surgeries at the moment to people that live in London. 

Do you think the situation with St Peters has affected your wait? 
I didn't know anything about it until I received that letter in May this year, and the letter didn’t even have my name on it. It was okay at first, because they said they'll find someone. Then I realised that there's nothing available because I was trying to reach out to St Peters and they weren't replying like they used to. They’ve left us hanging. I don't get how it's taken this long for them to just find the contract and a place to do the surgery. 

Given how long you’ve now waited, do you feel any regrets about how the whole process has gone?
Only now. I could have gone this whole year without having to try to hide my scar or without the pain that I went through, knowing that it wouldn't be able to get finished in the timeframe that they've had. They've had three years to just correct something – and they haven’t. They've had three years to give a hysterectomy, even on the fly, and they haven’t. I don't get how these people literally have my life in their hands. There's no care whatsoever. 

It does give you that sense of doubt where you're like, should I have waited? Was I too eager? But you do get desperate. So you do take whatever they give you, good or bad.

What impact is the wait having on you?
It's like someone's put you in fifth gear but in reverse. My dysmorphia is worse than it's ever been. People say, “Your beard’s great!”, but my face was never the problem. It’s never been about the aesthetic, it’s about the feeling that I feel. Even if I didn’t look how I look to you, if I felt like I looked okay, that’s enough for me. It only takes me missing my dose [of hormonal medication] for my period to come back.

The worst I’ve felt is having to buy sanitary towels again, but the pain doesn't go away. It still happens like clockwork. You still get emotional in this shit. I'm like, “Why am I crying at a fucking advert or some soldiers coming home?!” But it's all hormones. And I don't feel happy. I don't feel content. I've been mentally stronger this time because I'm having therapy, but it’s the elephant in the room. Everything else in my life is doing good apart from this one thing. 

Are you doing anything to support yourself through this?
Just therapy. I started DBT [dialectical behaviour therapy, a type of talk therapy] in September. My mum passed away in July so that made my DBT even more meaningful. At the same time, that’s only a few hours a week, which is never enough. 

What are your thoughts on the current UK healthcare system for trans people?
The state of it in the UK is quite embarrassing, for the simple fact that everywhere in the world is doing better than us. They've got experts on it [here], but these experts haven’t got a clue. I don't know if they're overwhelmed, or whatever it is, but I don't think that they can mentally cope with each individual as they should. 

VICE: When was your first appointment with the NHS about lower surgery? Where are you at right now in the process?
Ed Davis: I knew I wanted bottom surgery in 2011, when I first realised I'm non-binary. When I moved to the UK [from Canada] in 2015, I'd already been diagnosed with gender dysphoria and prescribed testosterone. I waited 22 months for the first appointment with [a Gender Identity Clinic] in 2017, where they were suspicious and patronising and asked inappropriate questions – they didn't even seem to know about my formulation of testosterone. My second appointment was one year later and together, those appointments effectively became a bottom surgery referral. They approved my T [testosterone] prescription on the NHS and referred me for my first St Peter's consult in mid-2018. 

I had the first two stages of my three-stage phalloplasty in 2019 and 2020. I had one minor complication after stage two and I'm waiting for the lower surgery team to diagnose it. I'm hoping for a repair operation in 2023, and stage three in 2024 or 2025. My third stage is an erectile implant: a pump designed for cis men with erectile dysfunction. There's roughly a 30 percent chance that I'll develop an infection within the two months post-op, which means another surgery to remove the implant and heal before trying again. Once it's successfully in place, the erectile device will eventually fail and need to be replaced.  That could happen after just a year or 20 years – nobody knows.

How does lower surgery figure in your overall transition?
My goal was never a straightforward linear transition in order to look as close to cis as possible. I'm non-binary, but fairly comfortable being perceived as a femme gay man. I'm not transitioning to "become a man" or so that my body meets others' expectations, I'm transitioning so I can live comfortably and happily in a body that meets my needs.

In my initial diagnosis in Canada, my clinician asked what I'd want if I could close my eyes and wake up with any body parts. I said right away that I'd want a penis. At first I didn't think surgery would help, because I'd learned a lot of myths about it and I was prioritising cis ideals. Packers [which are used to create a penis-like bulge] and STP [stand-to-pee] devices often made my dysphoria worse because they didn't feel like part of me. I coped by telling myself I didn't need bottom surgery, but I was really just trying to get by with the bare minimum. 

So how does it feel to potentially wait three, four years till the surgery is finished?
I still don't have erectile function and it makes me feel incomplete. I hoped since I was 20 that I'd be finished with transition by 30, but I just turned 30 and I'm still waiting. It hurts to admit that my body can't yet do something unassisted that most people expect to come naturally – there are workarounds, but they require creativity and patience. Partners often expect a penis to look or function certain ways. I know cis men struggle with those expectations, too. 

Has the extended wait time changed how you feel about your decision to get bottom surgery?
Never. I'm so glad I've done it, [even though] I still had doubts even up to the morning of each stage! I went round and round about [getting] it, but my gut instinct always said the same thing: I needed this surgery, and I just had to trust that I'd learn to love my body afterward no matter what happened. No one has a perfect body, but it's mine now, and it just feels easy and peaceful and right. Cis dicks may do things mine can't, but I've been able to make choices that cis guys don't usually get to!

What’s your assessment of trans healthcare in the UK right now?
It's hell. I wouldn't wish it on my worst enemy. I'm just grateful I've been able to get lower surgery and found ways to afford the healthcare I needed privately, but the trauma will stay with me for a long time. I was told the NHS is similar to the Canadian system, but that was completely wrong. I wouldn't have moved to the UK had I known how bad it is here.

In Canada, I trusted my doctors and I could admit doubts and be really open and honest without the threat of clinicians punishing me by withholding treatment. They respected my bodily autonomy and put me in control of my future so I could get on with my life. It took three months to get diagnosed and start hormones versus three years just to transfer an existing prescription here.

And when this is all finished, what do you most hope for?
I want to plan a future without always having to make backup plans in case I get a surgery date with two weeks' notice and a month's recovery time. I want to help change the system so in the future, trans people won't have to sacrifice time, money, and energy we don't get back. Above all, I want to heal mentally. The trauma and cruelty I've experienced in trans healthcare isn't a failing of the system; it's a feature. It's been really hard to reconcile that with my belief that most people are good and want to help.

@bexwade