My informative non-binary top surgery tumblr

A hopefully useful account of my NHS non-binary top surgery in 2017, aimed mostly people who are going through the process themselves, or are interested in doing so. 

[nbtopsurgery]

Five Year Update

It seems like people are still finding this blog from time to time, so I thought I’d post an update for my chest’s fifth birthday today.

There isn’t really much to say in terms of my chest itself. It hasn’t changed very much in the last two years, but the scars have continued to fade and flatten and I think the area where the stitch got infected is less obvious. My body has changed because I’ve been on a low does of testosterone (on and off, but about 18 months total), though I don’t think it has affected the shape of my chest much. 

In terms of where the UK is at with top surgery for nonbinary people, it seems to be a double-edged sword where gender clinics have become more open to the diversity of trans experiences over the last five years, but at the same time the infrastructure of NHS gender clinics is in complete collapse, so it doesn’t make any fucking difference becuase people can’t access treatment in any reasonable timescale. For me, it took 3 years and 8 months from referall to the clinic to having my surgery, which now sounds supersonic when you consider that my partner who was referred in 2018, waited four years just to have an initial appointment, by which point they had been on private hormone treatment for 2 years.

Trans care isn’t the only area of the NHS that is suffering under the tories, obviously, but it does seem to be an area at the forefront of defacto privitasiation because people are desperate for treatment that is just not being made available.

Which is just to say, I am aware that I am very lucky to have got this life-changing surgery when and where I did, and I’m rooting hard for everyone out there who is struggling to access the care they need.

Although my surgeon, Grit Dabritz does not seem to offer private top surgery as far as I am aware, Ioannis Ntanos, who works with her at the same hospital in Manchester, does. I’ve heard positive things about him, so for those in the UK looking for private top surgeons, he could be worth considering.

[nbtopsurgery]

It’s my three year top surgery anniversary today, so I thought I’d post a little update. This is what my chest looks like now! I’m still incredibly happy with it, and am so grateful that I got to have the surgery. The scars have faded a lot, by this point, and i have pretty much full sensation over them. As you can see, the right hand scar is a bit messed up, which is entirely my own fault. One of the stitches got infected when I was healing, and instead of going to get it checked out immediately, I hoped it would work out okay by itself. This was a very bad decision, and could have been actually dangerous because post-surgery infections are no joke, but in the end it got worked out after several nurse’s appointments and two rounds of antibiotics. Don’t be like me! If you have top surgery and something looks like it’s not healing properly, go and get it checked out as soon as you can, okay? I guess the other thing to note is that I did decide to take testosterone after all. I was anxious about this, as I’d been pretty adamant to the gic that I didn’t want to take testosterone, ever. But for me, in my nonbinary identity, I think I really needed to have top surgery first, as that was the overwhelming source of dysphoria, before I could accurately figure out if I wanted to take t. But yeah, the doctor asked why I’d changed my mind, and I explained it, and he was pretty happy to offer testosterone on an informed consent model. I took 10mg and then 20mg (both much lower than standard trans male doses) of testosterone gel for 9 months, in total, and then decided to stop for the time being. I might well decide to take it again in the future. If there’s something I’ve learned it’s that non-binary transition is often not-linear, and can be surprising even to yourself. 

[nbtopsurgery]

Part 1: The Gender Clinic

So, in brief: I started identifying as non-binary round about 2010. I began to socially transition at that time – came out to friends and family and started using they/them pronouns but was unsure if I wanted to pursue any medical transition. I had been experiencing dysphoria about my chest since before I came out as non-binary, but between 2010-14, it became compellingly distressing enough for me to eventually refer myself to the Sandyford gender clinic in Glasgow in early 2014. As the Sandyford clinic takes self-referrals, I didn’t discuss anything with my GP beforehand.

A leisurely thirteen months later I had my first appointment at the gender clinic in early 2015, with a psychiatrist who no longer works at the clinic. A small aside: many, many non-binary people fly under the radar at gender clinics because they can present themselves as a binary trans man or woman. Gender clinics’ historic hostility to non-binary identities means that people are understandably unwilling to come out and possibly jeopardize their treatment, but it does also mean that doctors severely underestimate the numbers of non-binary people among their patients. However, I do not want to take testosterone and am really not at all masculine, as well as being a terrible liar. So, I felt I really had no choice but to go in and present as an openly non-binary person, who has dysphoria and wants to get top surgery. Going in, I didn’t think my chances were very good at all, but it seemed important to at least try, as it would be difficult for me to fund it privately.

Confirming my worst fears, this first appointment was a total, crushing disaster. The psychiatrist I saw appeared totally non-plussed by non-binary identity, and not at all open to learning about it. Among other uninformed and dispiriting statements during the course of the appointment, she said that I seemed like a ‘regular girl’, implied I wanted surgery for the androgynous fashion opportunities and told me point blank that I would not get top surgery on the NHS. I hadn’t exactly expected it to go well, but I wasn’t quite prepared for such outright dismissal and misgendering. She said that I could have a second appointment in 6 months, but her entire manner suggested that it was just a formality.

Approximately 6 months later, then, I had my second appointment, this time with a different doctor. I was originally scheduled to see the first one again, but something happened that meant I ended up seeing Dr Ewan instead. This turned out to be a fantastically good thing, and if I could go back I would have specifically requested not to see original doctor again after that horrible first appointment. The difference between the two doctors was astounding; while Dr Ewan still seemed to be fairly new to treating openly non-binary people, he was willing to listen to what I had to say, and learn from it. He even apologized for asking searching personal questions, which is unusual from a gender doctor. He confirmed that the issue of treatment for non-binary people was the hot-button topic of the day for gender clinics, and seemed interested in what I was saying about experiencing gender dysphoria without wishing to ‘fully transition’. He said that he would have to discuss my case with the other doctors, but I left the appointment with the impression that he would advocate for me.

I made a point of reassuring him that my expectations of top surgery were ‘reasonable’. I.e. I knew that having surgery wouldn’t suddenly mean that everyone would gender me correctly, but that I believed it would make me feel a lot happier and more congruent with my body regardless. I also tried to show just how long I had been thinking about this (about 4 years active consideration at this point).

A couple of months later, I got a letter from the clinic saying that I had been referred for surgery. Hooray! By this point we’re at about October 2015. For several months, I waited to hear something, and didn’t. By February 2016, I was worried, and attended the monthly drop-in service to see if I could chase up what was happening. I saw a different doctor again at the drop-in service, and explained what had happened. She promised to look into it and get in touch within the month. Nothing happened again.

At the start of April, I called the secretary of the gender clinic, to see if I could find out what was happening. The person on the phone told me that my surgery hadn’t been approved by the funding board, and seemed surprised that no-one had told me. I was also surprised that no-one had told me. They said that I would need to take hormones before having surgery, contradicting what the clinic head had said in a Q&A I had attended, and what Dr Ewan himself had recommended. The guidelines for top surgery had only recently been updated to be inclusive of non-binary people, and I assume that she had not read or been informed of the updated guidelines.

I make an appointment to see Dr Ewan again at the earliest possible convenience, which was in August. In the meantime, I talked to James at the Scottish Transgender Alliance, who was doing excellent work advocating for non-binary access to surgery. August rolled around, and I asked Dr Ewan what had happened. He was very apologetic for not informing me about the funding refusal, and said that he would bring my case again to the funders. Around October 2016, a year after my initial referral, I received a letter from Dr Ewan saying that the funding for my surgery had been approved. Hooray.

[nbtopsurgery]

Part 2: Pre-surgery

Everyone referred for top surgery from the Sandyford gets seen in Manchester by Miss Dabritz’s team. I got a letter confirming my first appointment with her would be in March 2017. It was my extreme bad luck that my appointment happened to fall on the day that Storm Doris was causing havoc with public transport up and down the country, and my train to Manchester ended up being held in Lockerbie station for two hours due to flooding.

I called Miss Dabritz’ secretary in a panic, and she told me that if I could manage get to the clinic by the end of the day, I could still be seen. I arrived at my appointment four hours late, soaked to the bone and stressed out of my mind, but in time to have a rushed version of my initial appointment. In this appointment Miss Dabritz introduced herself, I gave her a short version of my gender history, and she had a look at my chest.

She went through the various techniques that she used, and told me that I was on the cusp of being eligible for peri-areola surgery, but that the result might not be totally flat, so it was my choice if I preferred that or the bilateral mastectomy. To my surprise, she also was very interested in what I wanted from my chest as a non-binary person, in terms of nipple and scar placement, or if I wanted nipples at all. She came across as extremely open-minded and open to collaboration on finding the right solution for me as an individual. I was told that I would get a letter for a follow-up appointment, in which I would tell her exactly what I wanted for my chest, and I would have a pre-op.  At the end of the appointment I was directed towards the medical photography building to have ‘before’ photos taken.

Two months later I had a thankfully much less eventful trip back down to Manchester for my second appointment. Miss Dabritz’ clinic is held in the general ‘breast clinic’, but all the top surgery patients are scheduled at the same time so it feels pretty friendly, and I got chatting to a couple of guys, one of whom had also come down from Glasgow.

In this appointment, I told Miss Dabritz that I had decided on bilateral mastectomy with no nipples, because I felt that that would best fit with my desire for a flat, gender neutral chest. She took this in her stride and commented that I would be her first top surgery sans nipples. She also said that it would make the operation quicker and easier, and that if I decided I fancied the look of nipples later medical tattoos were available. We talked about surgery dates and agreed on one for mid-July, and made a follow up appointment for that at the same time. Miss Dabritz said that she would try and get me an individual room in the hospital, but that it might not be possible, and asked which gender of ward I would prefer to be on if necessary. I said that I would prefer the female ward to the male.

After that I saw the nurse practitioner, who talked me through some of the practicalities of the surgery. She explained that I would have drains in after surgery, and they would take them out before I left Manchester, and described the various complications that were possible and how I should deal with them if they occurred. She also showed me a photo of one of Miss Dabritz’s top surgery results. I got a host of pamphlets about breast surgery and anaesthesia and other things which I’m sure would have been very useful if I hadn’t lost them as soon as I got back home.

Then it was straight on to the pre-op, which took place in a different part of the hospital that I would never have been able to find without help. I was weighed, measured, had blood taken, gave a urine sample and had mrsa swabs taken.

I also had a phone appointment a couple of weeks later with a clinical psychologist. He didn’t go into any gender stuff, but basically just seemed to be double-checking that I was in a stable enough mental state to undergo the surgery and recovery process.

[nbtopsurgery]

Part 3: The Surgery

I ended up rescheduling my surgery to mid-August, and got an appointment letter saying that I should turn up to the hospital at 6pm on a Sunday. I got quite confused about when this meant I would be having surgery, and consequently which nights I needed to book a hotel for, and when I should travel back to Glasgow. It turned out that I would actually be having surgery on the Monday, but that they wanted me to come in on the Sunday night to make sure that I had a bed. From what I can work out, people usually have two nights in hospital, but it might be the two nights after surgery, or one night before and one night after.

My appointment letter also had a presumably standard but still alarming caveat that I should ring the ward on my day of admission to check that a bed was available, as it may be taken in emergencies. When I rang the ward the nurse on the phone didn’t seem to know why I was calling, and told me that the bed wasn’t available. My partner rang back (because I was busy having a panic attack) and talked to a different nurse who clarified that the bed wasn’t available yet, but that I should turn up to the hospital at the stated time and it would basically be fine. Which after a full day of stressing about it, it was. We walked through the eerily empty Sunday-evening hospital to the ward, and the very friendly nurse met us and showed me to my bed.

The nurses were all very good at putting me at ease, and I spent a pretty odd evening and night just hanging around in my hospital bed, reading and listening to podcasts and occasionally having my blood pressure taken. No-one was quite sure what time my surgery was scheduled for the next day, so they had me be nil by mouth from 2am. In the morning I put on my hospital gown (backwards, so that the surgeon could come and draw on my chest), and went through and signed consent forms. There was some confusion because they couldn’t find the information from the pre-op or my nhs number, and I had to have my bloods taken again. The anaesthetist came by to introduce herself, a surgical assistant  drew a few arrows on my chest, and then Miss Dabritz herself drew the rest of the marks on. At about 1pm, the nurse said that I was next up in theatre and a porter was bringing up a bed for me. I was wheeled down to the theatre waiting room, and the nurse stayed with me and told me stories about locking the porter in a linen cupboard. Then I was wheeled into theatre, had sticky monitor discs put on my back, and got an oxygen mask. The anaesthetist said that she was giving me something first that would make me feel nice and floaty, which it did, and then something that would put me to sleep. I closed my eyes, and then realised that I wouldn’t be able to open them again if I tried.

(cn for mentions of vomit in the next two paragraphs)

It was about half 1 when I went into theatre, and a woke up in the recovery room at just before 5. I woke up feeling thirsty and nauseous and weird but not in pain. The first thing I managed to say when I came round was ‘what happens here?’, because I wanted to know what needed to happen before I could get back to the ward. The recovery room nurse kept chatting to me and asking me questions, which I understood later was to determine how alert I was, but at the time I was quite annoyed that I was being asked what I do for a living just minutes after coming out of surgery. I kept feeling like I might be sick, but managed not to be, and didn’t have the presence of mind to tell the nurse how queasy I was feeling. After being in the recovery room for about half an hour they wheeled me back up to the ward, but the motion of being in the lift was too much, and I ended up throwing up (mostly on myself).

I made my triumphant entrance back onto the ward covered in my own sick, and was extremely happy to see my partner and mum there waiting for me. After the nurses had cleaned me up and I’d got into bed, my partner and mum chatted to me as I kind of worked my way back to reality and drank cups of water. I threw up a few more times, until they gave me an anti-emetic through the cannula that stopped me feeling nauseous. I looked down at the bandages on my chest and felt very good about it. The first time I needed to pee I was still getting motion sick, so the nursed helped me use a commode. Later that night I was able to shuffle to the toilet by myself, holding my drains in a stylish hot pink drawstring bag. The nurses had let me know that I could ring the bell if I needed more pain medication during the night, but in the end I didn’t need to. They did set up an office fan by my bed though, which felt like the most blissful thing in the world, as I felt very flushed and warm.

(cn for vomit ends)

The next morning I saw Miss Dabritz and she told me how much weight she’d removed from my chest, which was fun. I managed to put on a big soft shirt and some jeans, and give myself a bit of a wash with wet-wipes. It was decided that I was well enough to be discharged, and I got a bag of painkillers (paracetamol and codeine) and an appointment to come back to the outpatient clinic the next day to get my drains taken out. My mum took me back to the premier inn in a taxi, and I was very glad to not be in hospital anymore and to get to eat a proper meal.

Editing to add, as I forgot to put this in initially: From what I have seen, most surgeons have you wear a post-surgery binder to keep everything in place/prevent fluid build-up etc. Miss Dabritz’s team don’t use them. Instead, you have waterproof adhesive wrap over the bandages for two weeks after surgery, and it is then removed at the post-surgery appointment. 

I slept pretty badly on my back in the hotel room, aware that I had to stop the drains from falling off the bed. Early the next morning I went with my mum to outpatients F to get the drains removed by a couple of nurses. The moment they pulled them out felt extremely odd, and looked pretty gross, but didn’t actually hurt, and once they were out I felt so much better and more mobile. We managed to get back to Glasgow somehow or other (I dozed through most of the train journey holding a little electric fan up to my face), got home and slept for 12 wonderful hours in my own bed.

I had my surgery on August 14th 2017, about 3 and 8 months since I referred myself to the gender clinic, and 2 years and 8 months since my first appointment.

[nbtopsurgery]

Part 4: General observations

I have tried to keep this account as straight forward as possible, so I’m putting this bit at the bottom where I ramble about how I felt about everything. First of all, I am extremely happy that I had surgery. It was 100% the right decision for me and I feel so much happier with my body already. Second, this was very much a process of two halves. From the time that my funding was secured, everything was pretty smooth sailing. There were difficulties - mostly financial ones around the appointments and surgery being so far away - but there was absolutely no gatekeeping or dismissal of my gender identity. It was just accepted by the surgical team and nurses that I had a right to have this surgery, and they would do their professional best to help me get through it. Obviously this is how it should be, but nevertheless it was such a jarring change from the atmosphere of the gender clinic. I want to again emphasis just how great Miss Dabritz was in general, and particularly in regards to my non-binary identity.

It really was an uphill struggle to get to the approved and funded stage though, and I only stuck with it because I didn’t have much of a choice. If I were taking testosterone and presenting as male, I doubt I would have bothered to come out as non-binary, and if I had the means to go private for surgery I would probably have just saved myself the stress. But! I hope, at least, that my having fought for this makes it easier for other people in the future. It is definitely now possible to have top surgery on the NHS, as an openly non-binary person who doesn’t want to ever take testosterone or live as male.

From what I’ve gathered, treatment for non-binary individuals is a very hot topic at UK gender clinics at the moment, and although there is a definite trend towards more inclusion, attitudes still vary wildly between clinics and clinicians. Add to that the general lack of funding and administrative chaos of many gender clinics, and you are unlikely to have a straight-forward route to getting the treatment you need. However, I hope that my experience shows that it can be possible, if not exactly easy.

I’ve tried to put in as much useful detail as possible, but if you have more questions about the process, feel free to message and I’ll try to work out how tumblr works enough to get back to you.