It Took Me Four Years of Thinking I Might Have Cancer Before I Discovered I “Just” Have Lipedema

I’m guessing so many of you have similar stories. For me, I left the hospital after delivering my first child, with legs that would never be the same. After some time on fertility hormones, then using progesterone during pregnancy, my legs had developed into tree trunks. With the birth of my second child, they grew a little more, and then significantly started growing nodules that feel like golf balls or lumps as the stress in my job increased dramatically over the last four years. I believed I had developed cancerous tumors in my legs.

I went to my doctor and asked for help. She sent me for x-rays, blood work, several MRIs both with and without contrast, but the results were inconclusive. We all but gave up and headed instead down a path of diet change to vegetarianism for several years and ultimately towards a third bariatric surgery which has not occurred.

Two years ago, I developed a sudden bout of tendonitis in my leg and saw a foot specialist, who sent me to a brace company to have a special brace fitted. The technician asked me who is treating my lymphedema. I had never heard of this. I went back to my doctor, who sent me to a certified lymphedema specialist for massage therapy, swimming therapy, a flexi touch pump, and compression. This led me to join some Facebook support groups. When I shared my photos of both legs online, I learned from my friends that I probably actually had lipedema.

Four years after I started my search, I have a diagnosis by Dr. Jaime Schwartz in California, half a country away. I hear over and over that doctors receive one hour of training on the lymphatic system during medical school. My experience is that lipedema and lymphedema, while not rare, are very rarely diagnosed correctly. And diagnoses as early as possible is imperative to slow progression with conservative treatments.

If you, or someone you know has LegsLikeMine, and you haven’t received the proper diagnosis, I urge you to share this book with your doctor to get you the right help as soon as soon as you can.