Living Through Lipedema Instead of Waiting for Life to Begin

A personal reflection on surgery, complications, recovery, travel, identity, and the decision to continue living fully even when the body feels heavy, painful, uncertain, and exhausted.

Before I begin this reflection, I just want to thank you for being here. Every week, I see new readers joining this community from more and more countries around the world — readers from the USA, Australia, Canada, the UK, and places I honestly never expected when I first brought LipedemaScience to Substack in November 2025. It still feels surreal to me. I read your comments carefully. I see your stories, your frustrations, your questions, and your reflections. And I genuinely want to learn more about what matters most to you when it comes to lipedema, so I can continue creating articles that are useful, honest, and relevant for the people reading them.

For those of you who are new here, my name is Carina. I’m a food scientist with a master’s degree in food science and a bachelor’s degree in nutrition from Norway. I’ve lived with lipedema since I was 15 years old, when a birth control pill called Loette 28 changed my body in ways I couldn’t understand or explain at the time. Within just two months, my lower body felt completely different. Heavy. Tight. Painful in a way that made no sense to me as a teenager. And although I didn’t receive my diagnosis until I was 20, at Aker Hospital in Oslo, the condition had already been shaping my life for years before I had a name for it.

That meant five years of pain, confusion, frustration, and not understanding what was happening inside my own body. Five years of trying to explain symptoms that nobody around me seemed to fully understand. I know what that silence feels like. I know what it feels like to massage your legs at night just to be able to sleep, because the pain in the fat tissue is so intense and relentless that it follows you even into the dark. I know what it feels like to question yourself when your body keeps telling you something is wrong, while the outside world struggles to see it.

And I want to add something else that most people don’t know about my story.

Before lipedema was diagnosed, before I even had the language for it, I had already learned what it meant to be seriously ill. When I was 18 and on my first girls’ trip to Greece — just three days after turning 18 — I developed sepsis caused by a bacterium called Fusobacterium necrophorum. What started as a strep throat infection escalated into something that put me in hospital for several weeks. My recovery took nearly a full year. I couldn’t attend school for the first six months, and then had to compress almost an entire year’s curriculum into just a few months to graduate with my class. My school was incredible. A specialist came every Tuesday to help me rebuild my memory and cognitive function. A teacher stayed after school every single day.

That experience taught me something early: that the body can be pushed to its limits and still find a way back. Not without scars. Not without lasting effects. But back, nonetheless.

Science has always been a huge part of my identity. I’ve spent years working in laboratories — culturing human intestinal cells during my master’s thesis (which I was doing alone, during the COVID lockdowns, traveling to the lab to feed my cells while the entire world had stopped), researching how pea peptides influence inflammation, performing whole genome sequencing of pathogenic bacteria, and co-authoring a published scientific paper on food poisoning pathogens. I’ve also worked as a laboratory manager. Research is not just something I casually read online. It is something I have spent years working with professionally. Today I work in IT — as a project manager in software development, a completely different world — but my scientific foundation never really leaves me. It’s the lens I see everything through.

Before LipedemaScience came to Substack, I had already spent years building a lipedema knowledge community for Norwegian women — trying to create something that didn’t exist when I was first diagnosed and felt utterly alone with my questions. In November 2025, I brought that work to Substack as LipedemaScience, because I felt there was a much larger gap to bridge — between scientific research and the lived reality of people with lipedema all over the world. Research papers are often difficult to read, difficult to access, and difficult to translate into practical understanding. I wanted to build something different. A place where science, lived experience, reflection, and honesty could exist together. And I’ll be honest — my own surgeon played a role in that. After my surgeries, she encouraged me to use my academic background to help others, because she saw how many of her patients were hungry for guidance around food, nutrition, and science. That stayed with me.

Today, LipedemaScience has readers from 44 countries. That still feels surreal to me. But this article is not really about research. It is about life.

Because the older I get, the more I reflect on how fragile and precious life actually is. And how important it is to live it now — not someday in the future when everything is finally perfect, calm, healed, organized, painless, or emotionally easy.

I have also spent a long time thinking about the relationship between how we speak to ourselves and how we actually live. People often describe me as having a positive attitude — and that’s mostly true — but it didn’t come from nothing. I’ve had to consciously learn to speak to myself the way I would speak to my best friend. To draw a line between honest acknowledgment and outright self-attack. Saying my legs are painful today is honest. Saying my body is a disaster is something else entirely. That distinction matters when you live with a chronic condition, because management depends on consistency, and consistency is nearly impossible when you are at war with yourself.

One of the things I am most grateful for is that I never allowed my surgeries to completely stop me from traveling.

Traveling has always been a huge part of who I am. It gives me energy. Perspective. Creativity. Freedom. It makes me feel alive. It’s also deeply connected to one of my greatest loves — food. Not just eating, but the experience of it. Sitting somewhere you’ve never been before, ordering something unfamiliar, sharing plates, letting a meal become a memory. I am, honestly, a true foodie. My absolute favorite dish in the world is biff tartar — raw beef, egg yolk, onions, capers. I could eat it every day. And even during periods where my body felt difficult, painful, swollen, or unpredictable, there was still a part of me that deeply needed to experience the world, to sit at a table somewhere new, and feel like a person rather than just a patient.

And to be honest, it was not always glamorous.

I remember traveling with double compression garments. I remember feeling swollen and inflamed after flights. I remember my face looking like it was filled with water from fluid retention and stress. I remember physical exhaustion. Anxiety. Recovery. Uncertainty. And still choosing to go.

My first lipedema surgery was in September 2021.

The second was in November 2021.

The third was in February 2022.

The fourth was in October 2022.

Some of these surgeries were far more difficult than I expected.

After the surgery in November 2021, I developed a large seroma in my right thigh. Massive. Honestly, it looked almost like a large squash attached to my leg. I struggled with it physically and mentally for a long time, and it took years before I truly felt that the tissue started changing and healing properly. There are still nerves that haven’t fully healed — I sometimes lose sensation along the sides of my palms. That’s something I carry quietly.

At the exact same time I had the surgery in February 2022, I got COVID for the first time. My partner unknowingly caught it from friends while I was still at the hospital. We were staying only a couple of minutes away from the clinic, and while I was in surgery, he met some friends nearby. While he was sitting in the car waiting to pick me up after the operation, he got the message that one of them had tested positive. And shortly after, so did we.

Then came the surgery in October 2022. After that surgery, I developed internal bleeding in both of my hands. It was honestly a pretty brutal period.

But even in the middle of all of this, I kept traveling. Not because everything was easy. Not because my body was magically healed. Not because I always felt confident. But because I did not want lipedema to become the thing that completely stopped me from living.

So during these years — between surgeries, recovery, swelling, complications, compression garments, uncertainty, and exhaustion — I still experienced the world.

Barcelona in November 2021.

Iceland in January 2022.

Budapest, Vienna, and Prague in April 2022.

Santorini in July 2022. Island hopping in Greece on a sailboat that same summer. Copenhagen. Berlin. Paris. Mauritius. Italy — Venice, Sirmione, Milan. Sweden.

Kraków in December 2022 — where I remember my body still holding so much fluid, everything feeling heavy and sensitive, just weeks after my fourth surgery. I went anyway. Years later, I went back to Kraków again, and it was completely different. Same city, different body, different chapter.

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Here is a separate post where I share photos from all the travels I had during my surgery process, what I actually did when I travelled, the advice I received from my physiotherapist and others, and the practical tips I followed myself.

My Personal Story of Travelling Through Lipedema Surgery Recovery

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When I look back at that period now, I honestly feel proud of myself.

Not because I managed to look perfect while doing it. Not because I was symptom-free. Not because everything went smoothly. But because I continued showing up for my own life anyway. Because I built what I now think of as my 80-20 approach to living — doing the work, following the structure, making the choices that support my body most of the time, while still allowing myself to sit down at a beautiful restaurant somewhere in the world and simply be a person who loves being alive.

I know many of you reading this are currently preparing for lipedema surgery. Some of you are terrified. Some of you are exhausted already before the process even begins. Some of you are afraid of the recovery, the pain, the uncertainty, the financial burden, or whether it will even help. And I completely understand that. There was a moment during my third surgery — the one on my upper arms in February 2022, when I caught COVID the day after being discharged — where the only emotion I distinctly remember feeling was relief. Relief that the surgery had happened before COVID hit me. Relief that I had managed to get through it. Even in exhaustion, even while sick, my body found something to hold onto.

That’s the kind of resilience I want to talk about. Not the kind that looks pretty. The quiet, stubborn, showing-up-anyway kind.

I want this article to give you something important. Hope.

Not unrealistic hope. Not social media perfection. Not the kind of inspiration where people pretend healing is linear and beautiful all the time. Real hope. The kind that says your life does not necessarily end because things become difficult. Your body may change. Your priorities may change. Your relationship with yourself may change. But you are still allowed to live. You are still allowed to travel, laugh, create memories, fall in love with places, have difficult days, have beautiful days, and continue building a life that feels meaningful to you.

Lipedema can take a lot from people. But I hope it never takes your entire future.