Story from OAC Member Andrea Matthes 

Content Warning: This story contains discussion of miscarriage, pregnancy loss and related health experiences.

When people hear my story, they often assume that losing 164 pounds was the hardest part. In reality, the hardest part was realizing that even after all of that weight loss, something still wasn’t right.

Like many women living with lipedema, I can now look back and see signs that started years before I knew the condition existed. Around puberty, my lower body became noticeably larger than my upper body. I struggled with my weight for much of my life and eventually reached my highest weight of 328 pounds in 2011.

After weight loss surgery, I lost 164 pounds  over the course of two years. The transformation was incredible!

I became a personal trainer, a CrossFit coach, a triathlete and a Spartan racer. I was stronger and more active than I had ever been. By all appearances, I had achieved what many people think should solve every weight-related problem.

About a year after reaching my weight loss goals, I became pregnant. During that first pregnancy, my body composition changed almost overnight. 

I gained 20 pounds in just four weeks before miscarrying around six weeks. A year later, I became pregnant with my oldest son. About a year after he was born, I became pregnant again, and my children were born 21 months apart. With each pregnancy, my symptoms became more noticeable.

What concerned me most wasn’t my weight. It was the pain.

When my young children climbed into my lap, my legs felt bruised and tender. The discomfort seemed out of proportion to normal bumps and pressure. I also worried about what the future might hold, especially knowing that hormonal changes can worsen lipedema symptoms.

In September 2019, I was diagnosed with lipedema and the puzzle pieces of my health started coming together. For many women, symptoms worsen during times of hormonal change, including puberty, pregnancy and menopause.

Looking back, I could see how lipedema had been part of my story for years. After my diagnosis, I started with conservative treatments, including compression garments, manual lymphatic drainage, wrapping, exercise and a Flexitouch pump. While these approaches helped manage symptoms, they weren’t enough to provide the relief I needed.

Between August and December 2020, I underwent six lipedema reduction surgeries. The surgeries were not a cure. 

Even today, I continue to manage my lipedema through compression, movement, healthy lifestyle habits and ongoing symptom management. More recently, GLP-1 medication has become an important part of my treatment plan, helping reduce inflammation and pain associated with the condition.

What I’ve learned through this experience is that lipedema doesn’t disappear simply because someone loses weight. Losing 164 pounds absolutely improved my health and quality of life, but a diagnosis gave me something I didn’t have before: answers.

Want to better understand lipedema? Explore OAC’s educational resource, “Lipedema and Obesity,” to learn about diagnosis, treatment and symptom management.