My Lipedema Is Reacting Again
Ongoing hormonal changes are shifting my symptoms right now, and I want to share what that looks like.
Many of you have given me the courage to share more openly on this channel. When I think back to how it felt when I first received my diagnosis in 2012, the contrast is striking. There were almost no sources, no role models, and hardly anyone sharing their story. Many women were likely living with lipedema without knowing it, and I could barely find a single blog that described what everyday life with lipedema actually looked like.
How far we have come as a community
In 2016, I remember hearing about another woman with the same diagnosis on a Norwegian TV program. Two teams were competing to guess different patients’ diagnoses. One team consisted of doctors, the other of “regular people” with access to Google. The surprising part was that the doctors had never heard of lipedema, and the Google team could not find it either. Looking back now, and seeing how far the lipedema community has come, I feel both obligated and genuinely excited to take an active role. It feels like we are on the verge of moving mountains.
What I want is to help build a movement where people cheer for each other across the world, while also demanding better information, better research, and better health care for our patient group. The science is finally stepping up. Over the past few years, we have seen genuinely interesting studies emerge from many countries and research environments. The coming years will be fascinating, and not taking part in that journey would feel like a missed opportunity when you live with a chronic, progressive condition influenced by hormones, lifestyle, and factors we still do not fully understand.
My personal hormone connection
As I have shared before, my lipedema is strongly affected by hormones. As a teenager, it was a birth control pill containing synthetic estrogen that triggered it. By the time I was 20, I had severe pain in my fat tissue, especially in my legs and thighs. The pain was so intense that I was referred to a cardiac specialist, and that is where I received my lipedema diagnosis. My general practitioner then recommended that I switch to a birth control method without estrogen, because even back then it was understood that lipedema was linked to female sex hormones. When I changed to Cerazette, some of the pain eased. This was in 2012, long before I began studying Human Nutrition, but even then I was paying attention to food and how my body responded. Looking back at old messages to family and friends, I can see that I already noticed sugar as a pain trigger.
Stress and progression over time
Over the years, I have seen changes in my lipedema. It has been progressive, without a doubt. Stress has been a major trigger for worsening symptoms, and the intense stress I experienced while finishing my Master’s degree in Food Science was especially hard on my body. That was the year before I started my lipedema reduction surgery journey.
