Four years since I had the first

It is now four years since I had the first of my four lipedema surgeries, and three years since I completed the fourth.

It feels strange to look back, knowing that I was initially told never to consider surgery for lipedema when I was diagnosed in 2012. I received the diagnosis at a Norwegian hospital after seeking help for pain in my legs and thighs. The pain felt like a toothache—so intense that I had to massage the fat tissue just to fall asleep. This was very early, and lipedema was unknown to most people.

The next time I heard about lipedema was in 2016 on a Norwegian TV show where doctors competed against people using Google to identify a disease. A woman named Lotte had a condition the doctors couldn’t figure out. The host showed a large lump of butter to give them a hint. When Lotte revealed her diagnosis, the doctors said they had never heard of lipedema. But at least it was something I could show my family and friends to explain what I was struggling with.

In 2020, I was working on my master’s thesis in food science. Every day I was in the lab growing intestinal cells like a real-life Tamagotchi. It was stressful, and I was completely on my own doing something I had never done before—culturing human cells in the lab. Then the whole world shut down due to COVID. My cells didn’t, and I had to keep traveling to the lab to feed them with cell medium.

My body was under extreme stress during this period, which made my lipedema worse. I then started my very first job after completing my degree, working as a food safety specialist in the food industry.

A friend of mine told me about her cousin who also had lipedema. She had her surgeries covered by her job’s insurance. This marked the beginning of my own journey through four lipedema surgeries.

People don’t understand how hard it is to go through them. I had internal bleeding in both hands, a large seroma on my right thigh—which still feels strange—and sometimes I lose sensation along the sides of my palms, meaning some nerves still haven’t fully healed.

But the surgeries gave me something incredibly important: my heavy legs can now get enough oxygen to run on a treadmill without the burning lactic acid pain. The intense pressure pain is gone, even though I’m not completely pain-free. And life feels good.

Now the real challenge is finding a balance between maintenance and living life without constantly thinking about lipedema-related consequences.

I would love to read your thoughts and experiences in the comments.