My Life with Lipedema – Actually Okay, But Sometimes Really Sucks – Sarcasm and Joy Should Never Be Lost!
My medical history is probably pretty "normal" – now that I know more about the disease, I realize that we should have noticed it much earlier, but when you have thick legs, people just don’t think of a chronic illness right away.
Hi, my name is Michelle and I have lipedema – sometimes it feels like my life is really one big support group or therapy circle 😊 But let’s start from the beginning.
Even as a child, I was always a bit overweight, starting with Hashimoto's (undiagnosed for a long time), neurodermatitis, and a list of other conditions. Still, I’ve always loved sports and never gave up, even if I couldn't keep up with others. Proportionally thicker legs and hips run in my family, along with a small waist and that lovely ring around the hips. When I was 20, I lost a lot of weight, including from my legs, but the proportions still didn’t add up – as I said, it had always been like that. Eventually, the swelling, bruises, and pain from pressure increased, but it was just "how things were." By chance, when I was 22, I attended an event on a topic I had never heard of before... something about edema... I had no clue. But when I saw the images in the presentation, I thought, "Oh wow, is this guy showing pictures of me?" And that’s where all the madness began. Shortly afterward, I went to see the doctor, who was very nice. The diagnosis: Lipedema Stage 3, Lymphedema Stage 2.
Even though I was already working in a medical supply store at the time, I had no idea what to do with the diagnosis. In administration, you just don’t have much contact with such things. The doctor said, "Here’s the prescription for flat-knit compression, get measured, and I’ll see you in six months." But he added, "In 10 years, you'll need surgery – you can tell just by looking at your legs."
Okay, I left the practice with the prescription in hand, not really understanding what had just happened. Okay, I have a disease. Okay, I need to wear compression stockings now. Okay, at some point, I'll need surgery. What? What can I do now? What treatment options are there before surgery? Will the pain get worse, or can I stop it? All these questions came to me on the way home, but I had no answers. I called my mom, confused, and told her the diagnosis and what the doctor had said. Her response: "Don't worry about it, I've always had swollen legs too, and I'm otherwise pretty slim." I couldn’t quite understand her reaction, but I didn’t even know what kind of reaction I was expecting. At least, not that one. Now I know she simply didn’t understand the disease back then and saw it, like so many others, as something "normal" – just how things were. She couldn’t understand the pain either – how could she?
Completely confused, I went to my coworker, handed her the prescription, and asked her what I should do now. She was also affected and said something I apparently needed to hear: "What a load of crap. I'm sorry for you. Let it sink in for a few days, and then we’ll talk again." So, to anyone reading this who just got the diagnosis, I'm giving you those words back. Yes, you now have a diagnosis, it really sucks! Start slowly on this new path, and don’t rush anything. You've had the pain for a while now, so it'll still be there tomorrow and the day after. Your life doesn't need to change overnight.
Make peace with yourself first, and then start with what’s known: gather information, compression, diet, possibly lymphatic drainage, adjust your exercise, and listen to your body – the last one is surely the most important.
Some time later, I got my first compression – wow, that felt strange. It took a few days, if not weeks, to get used to it. No one tells you that even your wardrobe will need to adjust now. Sure, those lovely tights are your new companion, but they don’t always harmonize with tight jeans, thin dresses, or colorful clothes. So off I went shopping. I had already adjusted my diet when I lost weight, so I didn’t make any changes there at first. Over the years, I’ve tried different diets and found out what worked for me and what didn’t. There is so much information on the internet – it’s hard to know what to do. Personally, I found a mix of different recommendations that worked for me.
At first, I didn’t want to accept the diagnosis. I thought, "A doctor isn't going to define my life." So I went to a second phlebologist-lymphologist. Another "charming" person... They did an ultrasound, but the diagnosis was similar: Lipedema Stage 2, Lymphedema Stage 1. Well, at least it was one stage less. I didn’t feel comfortable in that practice, so a few months later, I went to another doctor. The first doctor was too far away to visit every six months. At 24, I found a phlebologist-lymphologist who was right for me. He examined me thoroughly, took his time, but was also 100% honest. It can hurt sometimes, but I personally deal better with honesty – sugarcoating doesn't help much here.
After months in flat-knit compression, I noticed that my skin's texture changed; somehow, my skin became looser. The water was draining a bit, my circumferences shrank minimally, and the pain eased. So it seemed everything was working, but as I said, my skin felt different. We agreed that I would wear flat-knit compression only every other day. He also said that daily would be better, but I had to listen to my body.
Ladies – this is the most important thing: Listen to your body!
My life then carried on almost normally. Compression stockings became a firm part of my life, lymphatic drainage only during the peak summer months since I managed the swelling well otherwise, and sports became an important factor in my life. Somehow, I suddenly thought I needed to join a gym. Oh, how I always struggled here. Not because of the exercises but because of the people. Yes, it's the wrong mindset, but it’s the truth. To me, there were women and men with perfect bodies, perfectly fitting clothes, and they all seemed so happy and content. And there I was, in my baggy t-shirts, bright red face, clearly not at peace with myself. But I pushed through again and again. My body benefited, but my mind and self-confidence did not. I had always danced, and at some point, I had stopped – I don’t remember why. Eventually, I found a new Zumba group where I felt comfortable. Suddenly, I enjoyed going to exercise. I didn’t need to motivate myself; I was motivated from the start. Since then, working out has been much easier. Of course, I still thought, "Wow, they all look great," but for me, this sport was my salvation. Even after the liposuction, it was my anchor back to normalcy.
Ladies – another important thing: Find the sport that you enjoy, and you will never have to force yourself to exercise again. Your body and mind will thank you for it.
Life went on like that for a while. During stressful phases, I felt my legs more, and when I didn’t pay attention to my diet, it showed too. I should have just listened to my body, but somehow, at 25, I fell into a phase where I stopped listening. During the COVID lockdowns, I spent more time at home, couldn’t travel anymore, and lost interest in many things. I gained weight and had some significant flare-ups in my legs and arms – oh, they grew quite a bit. At some point, I said, "Stop, this can’t go on." I got stricter with my diet again, reintroduced exercise into my routine, and embraced life as much as possible. The flare-ups remained, though. At my next doctor's appointment, I asked about liposuction. What did he think? Did he believe it would make sense for me? His response was clear: Liposuction only makes sense for him if conservative therapy is no longer enough, if you’ve reached a stable point through exercise, diet, and other components of decongestive therapy, and if you are honest with yourself – you will never have thin, tight legs.
I thought about it for a long time and eventually decided to go for it anyway. Why? Because of the compression! I hated those stockings. Yes, they helped with the pain, and my butt didn’t look half as good without them 😊, but the constant tightness, the waistband that kept folding over, not being able to say on a trip, "Yeah, I'll walk the 10 km today" because I didn’t have my stockings on... I just missed spontaneity in my life. Compression took away so much of my positive spirit that I had to get rid of it – even if just for a few years.
Okay, so that’s how I made my decision. I discussed some details with my doctor, and he recommended Dr. Rapprich in Bad Soden. He said he had only seen good results from him. He performs multiple surgeries and takes into account both the patient’s body and the aesthetic outcome. Until then, I had no idea what things like "radical liposuction," "water jet or tumescent" meant or what I should really expect. During the consultation with him, it was clear: lose weight before the surgeries, and then go for four surgeries. Phew, four surgeries – I thought I wouldn’t need that many. So, I let it sink in for a few days and thought it over – cost was also a consideration, as Stage 2 means insurance wouldn’t cover it. I had actually planned to go on a little world tour, but since that wasn’t possible due to COVID, I at least had the money for it. So far, only my parents (by now, my mom had apologized multiple times for her initial reaction, as she saw the condition in me more and more) and my best friends knew about it. They all said I needed to make the decision myself, but they understood.
On social media, you find so many posts – some went well, some didn’t, some said it was easy, others said it was painful – there was everything. So I couldn’t really get a clear picture of what to expect. My inner feeling, however, said yes, so I scheduled the first surgery for late February 2021. Wow, I was nervous. I didn’t want to tell anyone (besides those already mentioned) because liposuction still has a reputation as a cosmetic procedure, which, of course, doesn’t reflect the reality, but it’s the way it is.
Before the surgeries, I lost nearly 10 kilos (those nice COVID kilos 😊), and the surgery marathon began. In the end, it was three surgeries, as the last two were combined under general anesthesia. During the second surgery, the painkillers didn’t work properly, so I felt too much in my opinion. With general anesthesia, it went better, and my body appreciated it too. The surgeries themselves weren’t as bad as I feared, but it took time for my body to get back to normal afterward. After two weeks, I started doing light exercises again – 20 minutes, no more. Zumba for 30 minutes, without jumping and without too fast movements, after three weeks, but by four weeks, it was time for the next surgery. It was a real marathon. Just as you start feeling somewhat fit again, it’s time to go through it all again.
From late February to late June, my recovery process dominated my life: lymphatic drainage, exercising, getting fit again, and, of course, working full-time – there was certainly no boredom. Gradually, I noticed my body getting fitter again, but it took me the full healing year. I had banned the word "patience" from my friends, parents, and lymphatic therapist after a few weeks because I just didn’t want to hear it (even though they were right). But what turned out to be an even bigger challenge for me personally was accepting the surgeries and the changes to my body. I had never read about that anywhere before, but it was real.
Thoughts like "Oh God, I hope it doesn’t come back if I eat something different," "Did I choose the 'easy' way out? No, actually the more painful one," "My legs don’t even look that different," "Is that new dent in my leg?", "I indulged in the luxury of surgery, so now I need to achieve everything others can," "What do people think about me?" and so on. My self-doubt increased at first, rather than decreasing. My fears of things getting worse were higher than expected, and my focus shifted completely. Every small change in my legs or arms threw me off balance, as I never knew if it was good, bad, or what to expect. Man, I made life tough for myself. Despite exercising, my skin is now a bit looser than before, but I can deal with that. The pain is gone, and the compression garments are packed away. A year and two months after the last surgery, I can say: The surgeries have changed my life, but not entirely. Without compression, I am happier and more flexible, and I love wearing dresses even more now. Do I have thin legs? Not at all. Am I completely pain-free with no more swelling? No, but it’s manageable. If swelling comes in hot weather, I put my feet up. It should be better the next day. I still occasionally wear round-knit compression, but rarely. Whether that will be the case again this summer, we’ll see. There are dents on my legs, but so what – I have a disease, but I define my life, not this annoying edema or the compression!
I’d be lying if I said everything is great. Every day, I look in the mirror and look at my legs and arms. Every day, I think carefully about what I eat. Every day, I listen to my body, and I still amplify every feeling. I hope this gets better someday, but I’m still far from truly accepting myself as I am. Shorts, dresses, and tops will still be worn in the summer, and spontaneous hikes on vacation are now possible.
I fought for this freedom through the surgeries, and I will keep it as long as I can. Will the pain and flat-knit compression come back someday? I don’t know, and I don’t want to know. As long as things are the way they are now, I am (almost) content. My self-confidence still isn’t the greatest, but I’m taking on one challenge at a time 😊.
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