FROM STRUGGLE TO SUCCESS:
A REAL WOMAN'S JOURNEY
WITH LIPOEDEMA AND WEIGHT LOSS
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Episode 248:
Show Notes
Episode 248:
Transcript
Dr Mary Barson (0:04) Hello, my lovely friends. I am Dr Mary Barson.
Dr Lucy Burns (0:09) And I'm Dr Lucy Burns. We are doctors and weight management and metabolic health experts.
Both (0:12) And this is the Real Health and Weight Loss podcast!
Dr Lucy Burns (0:21) Hello, lovely friend, how are you this morning on what is probably, or possibly, a beautiful Tuesday no matter where you are in the world. This morning I do not have the gorgeous Dr Mary, but I have another equally fabulous guest. A beautiful woman who I've known for quite a while. She's been in our community for quite some time. And she has a spectacular story to share that I think will be helpful for many of you. Her name is Lis Van Kooten. Lis, welcome to the podcast.
Lis van Kooten (00:49) Good morning, Dr Lucy. I'm really happy to be here. Thanks for inviting me on.
Dr Lucy Burns (00:54) You are welcome. I'm really happy to have you because I think your story is really, really important. And for a lot of people listening, you know, people will know that at Real Life Medicine our philosophy and our ethos is to really be kind and nonjudgmental and recognise, to use an Australian colloquialism, there is more than one way to skin a cat. And there is certainly more than one way to manage long-term weight issues. And that for most people there is not a simple, you know, one-bullet solution that many people need to use all the tools available. And so I thought your story sort of exemplifies that perfectly. So I would love for you to perhaps share some of your journey with our beautiful friends listening.
Lis van Kooten (01:41) Sure. Sure. So, well, my journey started a long time ago when I was about 11 and I started to develop symptoms of lipoedema. So I got big legs and was constantly told by the family that you've just got the family, big legs, you're just going to be big because it's in the family. But, you know, if you just exercised a bit more and perhaps didn't eat so much, you could look better, that kind of, the same narrative that we've all been told for millions of years. So, you know, I get older, I have kids, the lipoedema gets worse, the weight piles on and keeps piling on and piling on. And just constantly being told, well, it's actually because you eat too much and you're not moving enough. You get to a point where you think, look, I've tried everything. I've tried absolutely everything. I have exercised until I've fallen over. I've starved myself until I've fallen over. Nothing's working. So then I found Real Life Medicine probably 2021 and really adopted the low carb way of eating and found that when I was really strict with myself that the pain of the lipoedema went away and I felt like I had lots of energy, the weight was dropping off and it was, you know, hooray, hooray. And then life starts to happen again and Fluffy keeps waking up, all three heads. He's probably grown a few more heads in this time. He's maybe got five now. And I've started to find it harder and harder and harder to put him back to sleep.
Dr Lucy Burns (03:18) Yeah. Okey-dokey. So for people listening, I wondered if you could explain to them what lipoedema is in case people aren't aware of the condition. So you've, as you said, you've had it since puberty by the sounds of things. So if you could perhaps just tell our friends what is lipoedema and how did it affect you?
Lis van Kooten (03:36) Sure. Well, lipoedema is diseased fat. It's complicated, but the crux of it is I've got lots of fat pockets in my legs that exercise and diet don't necessarily shift. So when I was growing up, around teenage-y years, 15, 16, I'd have a really small top half. I don't know if we're talking sizes, maybe 10. And then my bottom half was always 16, 18, really big legs, heavy and nothing I did ever. So fast forward a million years. I got diagnosed when I was 51. So all this time I didn't know. So, look, it was great to find out, but, yeah, it took a long time. So lots of mess in the head.
Dr Lucy Burns (04:27) Absolutely. And you can imagine as a young teenage girl where, you know, beauty standards are that you have to be a waif. And, you know, I know for a lot of women with lipoedema the term tree-trunk legs, thunder thighs, they're very common slurs that have been used against them and often internalise themselves.
Lis van Kooten (04:47) Absolutely.
Dr Lucy Burns (04:50) Yeah. It's really common. Like around, you know, 11% of all women experience lipoedema. And it's not just that your legs are too fat. Like it's a complex connective tissue disorder where the tissue between the fat cells becomes inflamed and it leaks this sort of gelatinous material. And so women end up with swollen, I guess, legs that are filled with sort of a fluid. But then that fluid can scar and they end up with little lumps and bumps and painful nodules throughout it as well. So not just, you know, oh, well, they're storing too much fat there. It's kind of complex, which is why, as you said, it doesn't respond to standard calorie restriction because if you do that, yes, the rest of you will end up emaciated and the legs can still be larger. But, I mean, there are options available for people as well, which again probably outside the scope of what we're talking about today, but, you know, just so that people know there are definitely things that people do to manage because it's not just about the size of legs, is it? It's pain and heaviness as well.
Lis van Kooten (06:05) The size is actually the least important in my world, and I'm sure that for some women it's really important to have thinner legs. But that's actually the least of my worries. It's the lack of, you know, my mobility was starting to really take a beating. And the pain, waking up in the middle of the night with pain in my thighs and my hips and my knees, and I think that was probably the worst. And I could feel it getting worse, even though I was swimming every day, using a compression pump and seeing a lipoedema and lymphoedema physio because then I started to get lymphoedema as well in one of my legs. So, yeah, the size actually is not, it's kind of, oh, yeah, and by the way, that's kind of more like a diagnostic tool, an initial diagnostic tool, but hang on a minute, that doesn't look quite right. Let's explore that a bit more.
Dr Lucy Burns (07:10) Yeah, yeah, absolutely. So the second question was around Fluffy. So I thought we might explain again to people who perhaps aren't, haven't followed real-life medicine for very long or perhaps are new to us, you know, what are we talking about when we talk about Fluffy waking up?
Lis van Kooten (07:19) Well, Fluffy is the character from Harry Potter, and the real-life medicine story around Fluffy is when you keep your carbs low and your insulin response is moderated and nice and calm, you don't crave the carbs and you don't because Fluffy's asleep. You know, Fluffy is the insulin monster, I think, the carb monster. So when you're good, when you're doing the helpful things that make you feel better, like keeping your carbs low and prioritising protein, then Fluffy stays asleep. But as soon as you start to, you know, you might have a, I don't know, Christmas time. What do you have at Christmas? Some carby thing, roast potatoes or one head wakes up. And then before you know it, all three of his horrible heads have woken up and now you're eating all the carbs that have ever been produced.
Dr Lucy Burns (08:14) Yes, yes, yes, absolutely. So it is. It's an analogy to understand how cravings can work and, in particular, sugar and processed carb cravings. And this is why when we start with a little bit, you know, people can manage it, which is why, again, we always say you don't have to be perfect. But when we eat a lot and eat them frequently, then to suddenly stop can feel really hard. And that's because we've got this carb craving, we call it Fluffy who's a three-headed dog. So there's suddenly the three heads all wanting, desperately wanting carbohydrates of some sort. And, again, you can use that same analogy for any potentially addictive substance, whether it's alcohol or cigarettes or gambling or anything like that. So it's really just about trying to keep him either asleep or just with one head that is manageable, that you can go, yeah, okay, fine, yeah, I'd like that, but I can manage not having it rather than feeling completely out of control and that you've got no hope.
Lis van Kooten (09:19) Absolutely.
Dr Lucy Burns (09:21) Okie dokie. So you were finding you had trouble then managing the cravings and managing your food. Is that what you're – I think that's where we're at too now.
Lis van Kooten (09:29) Yeah, yeah. All three heads were awake with a few puppies waking up as well. And I'm 55 and I've got to the point where I thought, you know what, I'm so tired of constantly battling Fluffy and constantly feeling like I'm the one who's at fault for waking him up all the time. And, you know, and then I'll just berate myself because, well, you can't even get this right, you know, that kind of narrative that just wasn't helpful. Even though I know that low carb and, you know, prioritising protein is absolutely the best way. It gets rid of my pain, it makes me feel great, but there was just something there that I couldn't keep him down for whatever reason that was.
Dr Lucy Burns (10:20) Yeah, a little step.
Lis van Kooten (10:23) Yeah. So I decided that I would go down the bariatric surgery journey and had that – I had a gastric sleeve in October of 24 and it's brought up a whole new Fluffy.
Dr Lucy Burns (10:42) Ah, interesting, interesting.
Lis van Kooten (10:44) However, I don't regret having the surgery and I think it's, you know, it's only early days, but it's bringing up a whole lot of things that I think, you know, we all kind of know, you know, the reason why we're part of real-life medicine or why we're going down certain ways of eating, that it's all in your head. It's all, you know, it's all the head talk. It's the mindset. That's what – it's not the food.
Dr Lucy Burns (11:11) Yeah, I know, all the recipes. Yeah, so that's just – it's just highlighted that a lot. Yeah, and I think this is the thing that is really important for people listening out there is there is no one thing that works for every person and every person probably needs more than one thing. So this is where I just – and I really, really, really want to bang this point home is that there is no judgment, criticism or shame for people that require bariatric surgery in order to manage their metabolic health conditions or people that use or need injectable weight loss medications. I know that there's this sort of secret people often don't want to say, but they feel – and I know what they don't want to say. They feel like people are going to judge them. But honestly, it's just – it's another tool, isn't it? And it's not about taking the easy way out.
Lis van Kooten (12:08) No, far from it, far, far, far from it. I find it a lot easier now to eat low-carb. So I'm actually doing the low carb anyway, but I'm just – I find it's almost effortless now.
Dr Lucy Burns (12:23) Yeah, easy, right, excellent. So, again, looking at it, it's a tool to help you implement the things that you wanted to implement in the first place.
Lis van Kooten (12:31) Yeah, and, you know, look, I've had a lifetime of being judged, judged for being fat, judged for doing the injectables, judged for exercising too hard, judged for exercising not enough. So it's just everything is a judgment. I don't actually feel judged now at all.
Dr Lucy Burns (12:49) Good, good, good. Okie dokie. So had the surgery. Your surgery went well?
Lis van Kooten (12:58) It was, yeah, completely without any hiccups, which was great.
Dr Lucy Burns (13:00) Wonderful, wonderful. So then what happened? Like how did – for people that haven't had bariatric surgery or even ones that are, you know, considering it, what was the next step? What happened after you got out of hospital?
Lis van Kooten (13:12) The first few weeks are very restrictive. So there's a wake of just fluids and a wake of still really fluids and just bigger fluids. Then there's some time on mushy foods, and then you slowly get introduced back to normal eating, you know, normal foods. The thing is they say that your hunger goes away. My hunger never left, so I still get really hungry. The problem now – not problem, but what happens now is I will dish up a meal, then I can only eat a quarter of it. So it's a restriction thing for me at the moment, but it's making me think about the fact that I need to prioritise protein because I can only eat such a small amount. So I need to make sure that what I eat is nutritious and will fuel my body rather than fuel the emotions in my head. Yeah, so I need to be really mindful that whatever I eat is good for me.
Dr Lucy Burns (14:09) Yeah, yeah. It's a really interesting point, actually, because you're right. I guess volume-wise the stomach is now very small, so you literally can't fit much in. So if you then fill that volume with a potato, well, then you can't fit in anything else. Yeah. Okay, that is interesting. And I guess this is the thing we see, we do see for people with bariatric surgery, is making sure that they don't end up malnourished, that they actually have all of their nutrition managed.
Lis van Kooten (14:40) Yeah, so I do take supplements. I take a bariatric-specific multivitamin and also a calcium and vitamin D just to buffer any deficiencies that might be there.
Dr Lucy Burns (14:58) Yeah, it's not just a quick thing, is it? There's some complexity around it and making sure that you manage any of those complexities. It's almost the same with the injectable weight-loss medications, which offer a similar outcome in that, you know, people find it very hard to eat big amounts or big normal amounts of food following the use of those. And I think there's probably a whole host of people out there who aren't given any nutritional advice, particularly if they're getting their weight loss medications through, you know, a pop-up telehealth clinic that takes a form and a 30-second consult and off you go.
Lis van Kooten (15:40) It's so wrong, isn't it?
Dr Lucy Burns (15:41) Yeah, one of my bugbears. One of my bugbears. All right, so back to you. So you're still hungry but you actually can't eat very much but you're prioritising protein and you've got some multivitamins going on. Okey-dokey. And what about the emotional side of things?
Lis van Kooten (16:57) So that's what's hit me like a bit like a sledgehammer. You know, it hasn't been very subtle. So I had the surgery at the start of October. That whole month was like in the past, before the surgery,I would have eaten the entire month away and it wouldn't have been healthy food because my husband had his skin cancer removed. Then he had half his thyroid out. Then I had my surgery. There were two deaths in the family. My dad was in the hospital. He's not well. And everything was just piled into one month. And so I thought I wanted to go back to my old way of coping with things, which was to eat, and I couldn't. I physically couldn't.
Dr Lucy Burns (16:43) Do you know what's interesting though is, and before we came on here we were having a chat about that, was that you had thought that you were managing your emotions, that you didn't rely on food.
Lis van Kooten (16:55) Yeah, I thought that I had that down pat, all the, you know, I'm on to this and, you know, I do work on myself in other ways as well. But, yeah, no, that's, for me, and I went into it thinking it is just portion sizes because I eat well. I don't emotionally eat. It's just portions. You know, I just don't know when to stop. Yeah, well, it turns out that was not the case.
Dr Lucy Burns (17:24) How interesting is our brain, isn't it? It makes up a little story that feels like the truth until you're confronted with hard evidence that you have to actually go, hmm, I might need to re-examine my truth.
Lis van Kooten (17:38) Yeah, because I would make excuses, all sorts of excuses under the sun as to why I can't really eat this way all the time or, you know, I just, you know, I have a bigger body so therefore I need to eat more food or all sorts of reasons in my head as to why nothing ever worked. And then when you get to, I know my husband was in the hospital. I couldn't even drive yet. Like it was a week after I had my surgery. We didn't know if his thyroid was malignant or we didn't know what was going on and I had to actually deal with it.
Dr Lucy Burns (18:18) Yes. You had to actually sit with those uncomfortable emotions. Yeah. Yeah, interesting. And how did that go?
Lis van Kooten (18:28) Oh, he's all good and it wasn't, it was not sinister. Yeah, so that was October. So slowly I'm starting to get my head around just sitting with emotions and sitting in them for a bit, and then I'm doing so much journaling. It's everything I feel, I write it down. And every time I go, oh, I just want to, you know, all the chocolates are out. Everyone buys boxes of favourites for everybody. So every time I want to, oh, why do I want to eat this? And I'm writing everything frantically, and getting that out has been really helpful too
Dr Lucy Burns (19:06) Yeah, I love that. I love that. It's interesting, isn't it? So until you're forced to use the tools because you now, you know, your previous coping tool of using food, which even though you thought wasn't really there, that option is taken away by physically removing half your stomach, you then are actually forced to confront your emotions and use the psychological strategies that you've been taught over the years and actually implement them.
Lis van Kooten (19:35) Absolutely, yeah. Yeah. Even though I thought that I had.
Dr Lucy Burns (19:38) Yeah, yeah, yeah, yeah. So now you're saying that maybe you hadn't.
Lis van Kooten (19:43) I'm saying that definitely I hadn't because it was easy to just, oh, look, you know, for whatever reason, I know that it's probably not great for me to have chocolate, but it's okay. It's okay because I'm consciously doing it. I'm doing it with love and I'm doing it consciously, so it's okay. Yeah, yeah. It's actually not.
Dr Lucy Burns (19:55) Yeah, interesting. I think one of the things I think then that is going to be super good for you is that you are setting yourself up for the future, because one of the things that we see at RealLife Medicine is quite a lot of our people have already had bariatric surgery. So unlike you who sort of came, hadn't had it, started the tools for whatever reason, couldn't quite implement all the tools, had the surgery and now going, oh, right, God, now I do need to use the tools. There are people who had surgery, you know, a few years ago and, yeah, lost their weight initially and then they've regained and they're now realising, God, I've got to do something else as well. And so what you're going to find is because you're learning the tools, implementing and practising them, which is really the key because, yeah, it's like anything, isn't it? You learn the piano, but if you don't practise it, you forget. Learn a new language. If you don't practise it, you forget it. And what that will do is set you up for minimal regain.
Lis van Kooten (21:07) Yeah, absolutely. That's how I see it too.
Dr Lucy Burns (21:10) Yeah, yeah, yeah, and I think it's worth knowing that most people lose a significant amount of weight with bariatric surgery and of those, most people will experience about 30% regain, which is, you know, which can feel a bit, oh, I mean, that must feel pretty, that would feel hard for people. And so then they will either do something like you're doing, like see us or see a psychologist or something to manage the reason they're there. And it's often food or alcohol. Again, you still drink with bariatric surgery. You can still have wine, still fit that in, still fit in Coke or not, I mean, you know, Coca-Cola, any of those things. And so then people following surgery will either end up going on to injectable weight loss medications or have a second procedure. So there's a whole heap of things going on. And I think that what I love is that you've recognised that this is not the silver bullet but it's an extremely effective tool to allow you then to implement the psychological strategies.
Lis van Kooten (22:23) Yeah, and, you know, I've been down the injectable path and it worked really, really well until they weren't available and then, you know, it was just this constant up and down. I put all the weight back on, then they became available, so I tried again, weren't effective. It just becomes this expensive, great tool if you can get your hands on the stuff, but I do kind of think that it's a forever thing.
Dr Lucy Burns (22:48) I think for lots of people it will be. I think there's probably, again, like lots, it's not a one-trick pony and it's not a one-size-fits-all and this is, again, just why I'm so anti-text-based telehealth subscription services that don't actually talk to the person or get to the root cause of what's going on for them and recognising that it's about doing all the things. And, you know, a gastric slave is not going to make you go to the gym or lift heavy weights, but we do know that there are some things that, you know, once people are recovered, they need to do.
Lis van Kooten (23:22) Yeah, and I've joined an eight-week challenge at the gym. It starts in Feb. I swim most days anyway, but I'm going to do the challenge, not for, you know, they start off with, so how much weight do you want to lose? No, I'm not doing it for that. I'm doing it just to get back into the habit of going to the gym and lifting things, you know, and doing some functional stuff. So I'm starting that in Feb, but in the meantime I'll keep swimming and I'll keep doing my compression and, you know, I'm only three months in. But I'm finding it easier. I would float. I need ankle weights to keep me submerged because, you know, there's a certain amount of adipose tissue on me that keeps me floating really, really well. But it's actually hard to swim.
Dr Lucy Burns (24:14) Yeah, yeah, you're like one of those birds that donks its head into the water.
Lis van Kooten (24:17) Yeah. But I'm finding even that is starting to become easier. So things are shifting. I'm not on the scales every five minutes. I had to actually buy some scales because I didn't even want to do that, but I also recognise that it's probably not a bad thing to just, you know, do it in moderation. I'm just finding life starting to become a bit easier. And that, for me, that's what it's all about.
Dr Lucy Burns (24:46) Yeah. You know, there's lots of pieces to manage the metabolic health picture, to manage people's weight around that. There are lots of things that people need to do. It's not just one thing. But sometimes that one thing might help you be able to implement all the other things. And I think that's really the best way to look at things. And so if that's what does it, then for God's sake, go and do that one thing and then make a plan to implement all the others.
Lis van Kooten (25:16) That's it. And that's why I will stay in the real-life medicine community because that's where all the important stuff happens.
Dr Lucy Burns (25:24) Yeah, well, I think the mind, you know, as we know, I call it, it's your frenemy. It can be your most powerful ally or it can be just the little, you know, saboteur. And it's about really working that out and then working out the best way to manage it. I would love to say it's really easy, but it's not because it's about finding that balance between all or nothing, you know, being perfect versus the letting yourself off the hook because you don't want to be perfect because that's not good either. And we find if we're letting ourselves off the hook too often, then we're not actually doing it. But if we're aiming for perfection, then we can end up being really rigid and inflexible and that then is not a way to live either. So it is, it's finding your path and that can be tricky.
Lis van Kooten (26:14) Yeah, I feel very comfortable on this path. Sometimes people find it's a bit of a competition to I've done this naturally, but, you know, surgery is not natural, so therefore it's that kind of and I just, look, that's the judgement part. But mind you, I used to think like that too.
Dr Lucy Burns (26:34) I think we've been conditioned to do it, but, you know, there's no moral victory on getting to wherever it is you want to go, but there's no prizes. I don't know who out there is judging, but, you know, God or whoever, he's not out there going, oh, well, you can come to heaven because you lost your weight all by yourself. You'll have to go to hell because you had surgery. So, yeah. Yeah, there's none of that. I think it's really just about, you know, whatever it takes. What I want is for people to be able to make decisions with all the information available to them and know whatever it is that they're embarking on, what the pros and cons are, and that goes for whether it's bariatric surgery, whether it's injectable weight loss meds. You know, I was talking to a patient the other day who had to have a different gastric procedure and the surgeon had offered her a bypass operation, which is a huge operation, even probably bigger than a sleeve as far as long-term potential side effects and complications and whatnot, and she didn't want to do that yet. And she'd said that and then just as she's being wheeled in, it kind of said to her, not too late to change your mind, and I just thought, oh, that's so unfair. She's vulnerable. She's lying, you know, essentially on the gurney, ready to go in, and he's giving her the scarcity now or never line, and I just thought that's not fair. I think that had she decided to go down that path, then she needed to do that, you know, in the full context of all the implications, not a last-minute decision because, you know, surgery, you can't undo it.
Lis van Kooten (28:19) No, you need to mentally prepare yourself, not just mentally, physically prepare yourself. You know, I'm a natural therapist and some might think of me as a quack and that's okay, but I did all my quackery before I went into surgery, and I think that if I had, look, I don't know how I would have recovered if I hadn't, but I was in hospital two nights. I had no complications, everything, I had no pain, didn't take any of the pain meds or the nausea meds, none of it, but to spring that on someone who's prepared for a different procedure, that's unethical.
Dr Lucy Burns (29:00) Yeah, it wasn't my favourite thing. I think, again, it's just about people, you know, having autonomy, making, you know, as you know, we love this line, you're the boss of you, so it's about making a decision that you're happy with, being given all the information so that you can make that decision, and then going with it.
Lis van Kooten (29:22) I do have to say, though, that the knowledge that I gained working with you guys, if I didn't know about low carb or prioritising protein and I listened to what was told to me after the surgery, which was things like if you can just eat half a piece of toast and if that fills you up, isn't that great because that will make you lose weight, that will help you to get the weight off. If you can eat half a potato and if that fills your stomach, that's great because, you know, there's hardly any calories in that and so therefore you're going to lose a lot of weight.
Dr Lucy Burns (29:58) Right, yes.
Lis van Kooten (30:00) Yeah, and then I don't even think I said anything in reply to that because I thought how on earth is your body supposed to repair?
Dr Lucy Burns (30:11) Yeah, absolutely, and again, you know, weight loss of any sort, whether it's from bariatric surgery, from intermittent fasting, from the GLP-1s can come with a significant muscle mass loss and we need to do everything in our power to counter that because otherwise we end up with, you know, skinny, non-functioning muscles that don't support our body into our old age where, you know, we then just become frail, fall over and die. In a nutshell. So there we go.
Lis van Kooten (30:45) Yeah, let's not go there.
Dr Lucy Burns (30:47) No. Lovely, Lis, this has been so helpful. I'm sure people will relate to your story. Again, this is where, at Real Life Medicine you know, hopefully, lovely listeners, you all know there's no shame in needing any medical interventions. They are part of the puzzle and it's not this or that but this and that.
Lis van Kooten (31:10) Yeah, absolutely, and I'll just plug you also a little bit because the support that continues, that I continue to feel is phenomenal. You know, I've had the surgery, I've done all the things and it's like, well, okay, nothing's really changed. Nothing's changed. The support stays the same, which is awesome.
Dr Lucy Burns (00:34) Absolutely.
Lis van Kooten (31:35) Which is probably why I'll never leave.
Dr Lucy Burns (31:38) Oh, we love you. We love you. But, you know, if you ever needed to leave, we would still be your friend, so don't worry. All right, lovely ones, well, that's it for us this week. Have the most spectacular week and we'll catch up with you again next week. Bye for now.
Dr Lucy Burns (22:55) The information shared on the Real Health and Weight Loss Podcast, including show notes and links, provides general information only. It is not a substitute, nor is it intended to provide individualised medical advice, diagnosis or treatment, nor can it be construed as such. Please consult your doctor for any medical concerns.
