How do age, BMI and comorbidities affect access to top surgery? In this episode, Alex (he/him) shares his experience of transitioning in his sixties with leading gender affirmation surgeon Ioannis Ntanos (he/him). Exploring Alex’s story, they discuss the value of individualised care, peer-to-peer insight, and the challenge of weight loss before surgery.

 

Find Ioannis Ntanos on LinkedIn, Instagram and Threads.

To find out more about top surgery, visit https://www.ioannisntanos.com/ 

 

Ioannis (00:00):

Welcome to the Top Surgery podcast. My name is Ioannis Ntanos. I'm a specialist top surgeon, working with trans-masculine, non-binary, and gender non-conforming individuals. I'm also an ethicist and a trans ally. In this podcast, I will be discussing gender affirming care with a range of guests from those who have experienced top surgery firsthand to experts and ethicists with an interest in the challenges posed by this underserved area of medicine. I hope you'll join me in learning more about this fascinating topic.

Aby (00:31):

In this episode of the podcast, we chat to Alex about his experiences of transitioning later in life and what it's like to finally access top surgery after a lifetime of waiting.

It's really lovely to have you with us today, Alex. I wonder if you wouldn't mind introducing yourself for the listeners.

Alex (00:52):

Hi, I'm Alex. My pronouns are he/him, and I've reached the ripe old age of 67.

Ioannis (01:01):

Yeah. So, hi everyone. Hi, Alex. Thank you for doing this for us today. Okay. I'm Ioannis. My pronouns are he/him, and I'm a consultant surgeon and this is how I got to meet Alex too.

Aby (01:14):

Today we're gonna talk about transitioning later on in life and, Alex, I wondered if you wouldn't mind sharing a little bit about your story and how you came to transition.

Alex (01:27):

Yeah, sure. So I was born in 1955 and my genitalia caused the doctors to say that I was a girl. I grew up in a working class family and went to school. I wanted to play with boys toys. I wanted to play boys games. I wanted to play in the boys' playground. Really didn't felt I fit with the girls and I was just known as a tomboy. I did what was expected of working class girls. Got married, had kids. Got divorced, that wasn't expected. And then spent quite a long time in a relationship desert, where friends used to tease me for fancying gay men. I did jobs that at that time were considered male. I spent five years on a taxi rank with a bunch of guys, which I absolutely loved.

I learned to drive a forklift truck, and I just didn't like doing female stuff, but I tried to fit in and, you know, bought the clothes, bought the makeup, although I never really liked any of it. And then, I moved from down south up to Yorkshire and I happened to be watching a TV program, sort of a big brother type thing where there were these five people sharing a house and they were all trans. And this was the first time I'd ever come across the concept of transgender. I can't remember exactly when it was, but I think I was in my fifties. But living in a rural part of Yorkshire, I had no idea what to do with that revelation. So I just parked it. And then a few years later I'd been made redundant, had nervous breakdown and was seeing a therapist and we were talking about identity and I happened to say that I thought I might be trans and he told me I couldn't be trans because I fancied men.

He did admit it wasn't his area of expertise. So, fast forward and I needed a knee replacement. So, I had to lose a lot of weight before they would do the operation. So I had bariatric surgery and through that workup, you see a psychiatrist. And he said to me, you may find there's a point that you just can't get the weight anymore off, and usually there's something psychological going on. And we both thought it was something related to some childhood trauma. I was given an NHS psychologist after the surgery to have a look at what might be behind my weight gain. And it was during those conversations and the weight coming off that I suddenly realised that I did not want this female body and that the more weight came off, then the more I suppose. Yeah. Now I know it's dysphoria, but I spoke to a friend whose husband's niece, she transitioned down in London. So that was the first person I ever told outside of therapy. And then I spoke to another gay friend who said, I can introduce you to someone who's a trans guy if you'd like me to. So we did, really, really long chat and took it all back to therapy with a psychologist. And that's when things started to move forward. I was still a bit vague about how I needed to do things. I was very anxious about talking to my GP because I had no idea what reaction I would get. So, I probably spent a couple of years before I did that and in fact it turned out fine and I regret leaving that couple of years because the waiting lists are so long on the NHS that it was two years before I even got to see anybody.

So yeah, I started with the gender identity clinic and had a couple of assessments, waited another year or so before I could see an endocrinologist to get on hormones. During that time, I socially transitioned, did that back in 2018, changed my name, changed my pronouns, changed all my documentation, changed my appearance a bit. I mean, by that point I wasn't looking female, I was looking very androgynous. But I got my hairdresser to change my short haircut. That was quite funny actually, becuse this is a little market town with a very old fashioned hairdresser who still doesn't have a card machine or does anything online. And I told, I rang up to make an appointment, told them that I changed my name, you know, when I went in they asked me, so why I changed my name.

So I said, oh, I'm gender transitioning and mouths dropped open. I said, that's why I've been wanting you to cut my hair shorter. Because she used to like putting wispy bits at the back because she said it was more feminine. So, I said, can you do so with my fringe? So she said, well, before I do that, she said, can I do something with the back? And she then proceeded to do a male star haircut. And we've got on break. She's just totally utterly accepting. And I even get charged the men's rate now, which is cheaper. So yeah. And now we're talking about what she's going to do with my beard when I'll let anybody go near it, to tidy it up.

Aby (07:50):

How old did you reach when you finally got that appointment with the GIC?

Alex (07:54):

It was in 2019, so we're talking, four years ago. So I was 63, 64.

Aby (08:03):

Given your experiences, I mean, listening to what you were saying about the various delays and kind of wishing you hadn't spent that time waiting, how does that then translate in terms of the advice that you might give somebody else in your position that you were talking to, particularly in relation to those who feel sometimes that they've left it too late in life to transition and so they just, as you said, I think the words you used were that you parked it.

Alex (08:32):

No, no. I'm on a couple of Reddit FTM forums, one's over 30, the other's over 50. And it's quite a common question, particularly on the over 30 forum where somebody will suddenly have their egg cracked, as guys tend to call it, where they'll say, oh, am I too old to do this? And I'll pop up and I say, I'm 67 and I did it at 63. So no, you are never too old. Go for it.

Aby (09:02):

Do you think, can you pinpoint, I mean, you've talked us through your journey so there are certain things that we can see along the line that prevented you, but do you think that there were key factors that prevented you from transitioning that you haven't already talked us through?

Alex (09:16):

There's always the fear, along each stage of the journey. There's fear in my local community. I've had one transphobic experience from somebody who lives around the corner, not one I'd ever want to repeat again, although she can be a pain in the, um, so yeah, I do a lot of voluntary work and I was doing a lot of work around mental health at the time, so I had quite a network of people in health and social care and I was totally utterly comfortable in coming out with them. And I changed my pronouns, and they were all pretty good at trying to get it right. The name, the name was easier than the pronouns. But yeah, it's that that anxiety is still there, every time there's a change or I've moved house, or I've started something new then yeah, it's always there.

Aby (10:19):

Ioannis. In terms of the kind of age ranges of people that you see coming to surgery, coming to have top surgery, is there quite a spread or do you find there are more people at the younger age? Are you seeing more people coming who are slightly older? What can you tell us about the sorts of ages of people that you see?

Ioannis (10:38):

Yeah, well generally speaking, the mean age is in early twenties, so somewhere between 20 and 25. But then happily I see more extreme ages recently. So, on one hand you have underage, below the age of 18 that come and see me with their parents, that have discussions in general about surgery, more in the practice point of view, but also theoretically. And then you have more advanced stages above the age of 50. And I think that both, let's call them extremes, when it comes to age are because it's less of a taboo to discuss these things nowadays. So, it's easier for both younger and older people to be open about it. Alex, you said a few things earlier regarding your own journey that on their own, could be a huge chapter on what we're discussing today. The fact for example, that a mental health professional wasn't able to distinguish between sexual preference and gender identity strikes to me like amazing. And I hope that things like that are improving now. Okay. But yes, mean age 20 to 25, generally speaking, at any age top surgery should be available given the limitations of national guidance and in some case the limitations of additional comorbidities, when it comes to someone who is above a certain age.

Aby (12:40):

There are limits in terms of the recommendations on age, upper age range?

Ioannis (12:46):

If we are talking about international guidance, as they are said by the WPATH, there is no upper limit. As long as someone is healthy enough to have a general anesthetic for two to three hours, yes, why not? 

Aby (13:04):

What is the oldest patient that you treated?

Ioannis (13:07):

The oldest person I have treated personally was at the age of 72.

Aby (13:11):

I wondered if you could talk us through what your key considerations were when researching top surgery, because you know, you're coming to this as a fully-fledged adult, you know what you're doing, you've lived a life. So, I'm really interested in understanding kind of what went into your researching process.

Alex (13:30):

There were two key things actually. One was my BMI because despite the bariatric surgery, the gender dysphoria caused me to put, not all of the weight back on, but quite a bit of it. So, I was looking for surgeons who had a higher BMI limit on the NHS, and also geography. I don't have family in this country. I live alone. Yes, I have some friends, but you know, they're not necessarily here to do something at the drop of a hat and go halfway around the country. So, it had to be somewhere where people could drop me off or pick me up. So yeah, BMI and geography, and so I had two or three surgeons that I looked into, but I was still going through the process of waiting for more assessments and was quite shocked back in April when I finally got my final assessment for top surgery to find that the NHS rules had changed and the BMI limit for referral had changed and therefore they wouldn't refer me.

But during that time, I'd really looked into Ioannis. It is great. He's got so much media out there, his website's brilliant. I've listened to all his videos and all the questions that needed to be asked. And I had a real blip when I was told I couldn't get a referral, which lasted for about 24 hours. And then I gave myself a, a good talking to and said, okay, you gotta look at this a different way. And I happened to be chatting to a friend about whether I should take out a loan to go privately. Time was marching on, I knew I was not going to get the weight off that they wanted, at least for two years. I said, what do you think about me? Yeah, do you think it's a wise decision for me at my age to take out a loan? And she turned around and said to me, I'd like to pay for your surgery. She said, I've got an inheritance and I'd really like to do this for you. So I said, yes, please. So yeah, so on that I'd already emailed Ioannis to find out what his charges were and his timescales. So as soon as she said yes, then, I was back onto him and said, please, can I have an appointment?

Aby (16:04):

Ioannis, I'd be interested to get your thoughts on why your approach differs in terms of the BMI allowance.

Ioannis (16:14):

Well, the BMI approach is different for each surgeon, and I know for a fact that it's different for different units in the NHS that are offering this type of procedures. Generally speaking, we should all be taking an individualised approach. For some people advising them to lose weight before surgery will work, others will need the surgery as a motivation and as a change in their body to invest further time on losing more weight. So, for some people, top surgery will actually be the key factor that will help them improve their lifetime overall, including losing weight in the long run. There are some limitations if you are performing an operation in the center where there is no support for what might need it after surgery, high dependency unit, for example. But overall, BMI on its own should not be a factor that decides who gets to have surgery or not. And to, to be fair, a BMI of around 40 should be fine if it's much, much more than that. But especially we know with Alex cases where the psychological evaluation had been done, the surgical approach to lose weight has been done as well, the bariatric surgery. What else would you expect for someone to say, okay, let's assume the risks and let's offer the operation, in the best way we can. Unfortunately, the NHS is not as flexible when it comes to personalised care.

Aby (18:00):

When you met Mr. Ntanos, you requested a face-to-face appointment as opposed to a virtual one. Can you talk to us through why this was important for you?

Alex (18:11):

One, because I'm autistic and I find, I do video meetings and things, you know, you have to during covid. But there's always that barrier in the way. Well, for start you can only see somebody's head. There's always the risk of technical problems. You can't hear properly. Manchester still wasn't a million miles away, so, you know, it was feasible for me to drive myself there. But more importantly, I knew I had a case to make and I needed Ioannis to see my body and to be able to make my case for why I felt that I wasn't a major risk for having surgery and needed to build that relationship with him.

Ioannis (19:05):

Virtual clinics are great and we have increasingly been using them, especially after the pandemic, but they don't work for everyone. And what we should be doing is we should be able to offer both options to all patients and let them decide what is best for them. And even if a video consultation, a virtual consultation, gets us to where we want to be, but we think that something was missing, we should always be offering in addition, a face-to-face one as well.

Aby (19:39):

So, you tend to see most patients virtually these days since covid?

Ioannis (19:45):

It's not about the pandemic itself, it's about reviewing patients from all over the country, and for some of them traveling to Manchester could be an issue. But I'm happy to offer both types of consultations to everyone.

Aby (19:59):

Alex, you talked a little bit about Reddit earlier and the role that that has played in giving you access to the people to chat about your experiences and to lend your peer-to-peer insight and support. I'm really interested to understand a little bit more about the role that that peer-to-peer support played in your approach to top surgery. Perhaps the sorts of resources that you used and kind of how they helped you. That would be really interesting, I think, to the listeners.

Alex (20:31):

Yeah, so I found Reddit probably only about a year ago. I'd been on a trans male Facebook page previously, which I'd found really hard work and I'd come off of it. And it took me a while to find anywhere that was slightly near my age group. But so I just used to read the posts, I'd get fed up with it if it was the teenagers talking, and then I found one for over thirties where it was slightly more relevant and people would talk about surgeries and you know, people would ask questions, somebody would put a link in. So I'm known as an info junkie, as a nickname that somebody's given me. So I always want to go off and research things and find out and ask questions. So I just used to take it all in. What were the different types of surgeries? What would, you know, suit me? But I don't think I was ever particularly influenced by other people a lot. A lot of them on there were international, mainly in the States. Very few in the UK. So a lot of what was going on over there wasn't necessarily relevant to over here.

Aby (21:56):

When patients come to you, do they, have they kind of shared any other resources that might be of use in terms of peer-to-peer support, or is it mainly Reddit that people use?

Ioannis (22:08):

There are a lot of resources online and there is a huge variety on where individuals look for information. I mean, the internet is a beautiful tool if you're looking for information, there are websites of other colleagues in other countries as well. And usually patients come to me with kind of a mix up of different information, different pieces of different sites, different social groups, and they put it together based on what they desire and what their expectations are. And we have to work around that. But one thing that I really like is that most people who come to see me are really well informed. So, when it comes to information junkies, I really love the Alex, honestly. Okay. It makes the whole experience for me as a clinician much more rewarding. I have to explore what people know and how I can help them, what I can offer them instead of starting from the basics and trying to build up the knowledge step by step.

Alex (23:25):

What I found, from finding your website and your media was how helpful the interview did with a private clinic where you say what it is that you want to know, what do we need to bring to you? And I think that was probably one of the most useful resources that I found that,

Ioannis (23:45):

That’s really good to hear. Alex, you will be amazed however that I still ask patients. Okay, so what were expectations, what do you want to achieve with surgery? And I'm trying to be specific. For example, have you thought about your nipple reconstruction? And quite often I still get the answer. Well, I've never thought of that. Okay. Which is strange because the more information we can exchange between us, the more useful that consultation will be for both of us.

Alex (24:18):

Yeah, I'd certainly thought about nipple reconstruction, even though I wasn't able to have it in the end. I spent a lot of time sitting in the sauna in one of my local swimming pools, just looking at all these men's chests and where their nipples were and what size they were and what I wanted.

Ioannis (24:34):

There is a plan for that too. Okay. But we'll get to that later.

I hope you enjoyed this episode of the Top Surgery Podcast. Please subscribe and give us a rating in the review. You can connect with me on LinkedIn and Instagram at Ioannis Ntanos. To find out more about top surgery, visit Ioannisntanos.com