Story from OAC Member Nicole Bullock 

For as long as I can remember, my legs were different. When I entered puberty, my thighs were much larger than those of the other girls at school. I played soccer for eight seasons, but I hated wearing the team-issued shorts that seemed to draw attention to my legs.

At the time, I assumed it was simply how I was built. As I got older, I realized I wasn’t the only one in my family with similar features. My sister, aunts, grandmother, several cousins and eventually my daughter all had what we jokingly called “Watson cankles”—calves that seemed much larger than our feet.

In my 20s, after becoming a mom, I started noticing my thighs and arms getting larger. My weight fluctuated over the years, but no matter how much weight I lost, my arms and legs never seemed to change very much.

Then, in 2012, I underwent Roux-en-Y gastric bypass surgery and lost 130 pounds.

While my arms slimmed down somewhat, my legs remained bulky and disproportionate. The measurements I had taken before surgery barely changed. In some ways, my body looked more disproportionate after losing weight than it had before.

Years later, I was diagnosed with Hashimoto’s thyroiditis, which led to rapid weight gain. Around the same time, I started noticing my legs were heavier than they had ever been. They were painful and tender to the touch. I bruised easily. I could feel large nodules beneath my skin, and sometimes my limbs felt like they were made of cement.

Searching for answers, I came across posts from a fellow OAC Member sharing her experiences with lipedema and lymphedema. As I read about her journey and began researching the condition myself, I felt like I was reading my own story.

In my early 40s, I brought my concerns to my internal medicine physician. He admitted that he had never diagnosed a patient with lipedema before, but he was willing to review the criteria with me and learn alongside me. Around the same time, I had also been diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), a connective tissue disorder that I later learned is commonly associated with lipedema.

My physician wasn’t comfortable making an official diagnosis and encouraged me to pursue additional evaluation with specialists, starting a journey that many people living with lipedema know all too well.

Liposuction is often considered one of the most effective treatments for lipedema, but insurance coverage can be difficult to obtain. I began wearing medical-grade compression garments and exploring conservative treatments while searching for answers. Eventually, I connected with specialists and, after months, received an official diagnosis of Stage 3 lipedema.

My surgeon recommended multiple procedures to address the affected areas and explained how treatment could help reduce symptoms and improve my quality of life. Initially, my insurance appeared willing to provide partial coverage. Later, after additional reviews, I learned that surgical treatment for lipedema was considered a policy limitation and would not be covered.

That experience is not uncommon for people living with lipedema. My insurance also didn’t cover a pneumatic compression pump for my arms and legs, which became an important part of my care. In April 2026, I underwent my first lipedema surgery and recovery was more challenging than I expected. 

Today, I still have additional procedures ahead of me, but I’m already experiencing improvements that remind me why I started this journey in the first place. I have been walking, hiking, traveling and swimming more comfortably than I have in years.

Lipedema remains underdiagnosed and misunderstood, but awareness can help more people find answers. Sometimes, having a name for what you’re experiencing is the first step toward finding hope. To learn more, watch OAC’s Fresh Perspectives episode featuring Courtney Henderson, where she discusses the chronic disease of lipedema, how it differs from obesity, available treatment options and resources for patients and healthcare providers.