Patient Stories

Staying athletic and moving forward despite challenges

By Juli

I am from a family of curvy women – a lot of curvy women. My grandmothers, my aunts, a few great aunts, and several female cousins were all “plump.”  At age 10 I first noticed that I looked different than other girls my age. During puberty, my mom put me on a diet as I was “chubby.” Despite playing school sports, dieting, and exercising outdoors, my legs looked much bigger than other kid’s legs. I was called thunder thighs. 

In my freshman year of high school, I grew three inches and gained weight – but not a lot. I had a small waist, but my thighs kept growing. I continued to play sports, made the varsity teams for volleyball and basketball, and became a cheerleader while enduring snipes and comments about how big my legs were.  

Throughout college, I continued to work out, play sports, and swim (200 laps, 4 times per week), but my thighs stayed the same – large with little to no definition. I ate as little food as I possibly could.

I married in 1994 and became pregnant with my first child three years later. My legs were growing and hurt so much I could hardly tolerate the pain. I went into preterm labor and was put on bed rest for three months which helped with the pain, but my legs continued to swell. My second pregnancy was more difficult. I was put on bed rest for six weeks before my daughter was born due to preterm labor. My weight gain and leg pain continued.

Many times, my primary care provider (PCP) and I thought we had figured out my issues. Then she realized my ovaries were dysfunctional. In the fall of 2015, I had a total hysterectomy, at 198 pounds. My fatigue improved and by the following February, I was able to get back to exercising. I worked out with a trainer and lost 10 pounds. Although my body measurements were getting smaller, my thighs were still large.

The hysterectomy plunged me into menopause in 2016 and by May, I was 208 pounds. I continued to work out, but by September of that year – despite everything I was doing – I was up to 215 pounds. The pain in my legs grew worse.

In 2017 and 2018, I completed four Olympic Triathlons –  a .75-mile swim, a 25-mile bike ride and a 6-mile run. I trained for several 5Ks and a half Ironman and completed a 200-mile Seattle to Portland (STP) bike ride in 2 days. I trained 5-6 days per week, 2-4 hours per day during these years. Even with all of that exercise, I gained weight instead of losing and my legs got even bigger.

In January 2020, COVID hit and I weighed 226 pounds. I was working remotely, teaching webinars, and working from my bed. By July, I was 237 pounds. I stopped dieting and focused on eating protein and vegetables with a small number of carbs. I lost 9 pounds by December. My PCP wanted me to try intermittent fasting to help with my insulin levels. I did it exactly as I was supposed to do and in 2 weeks, I had gained back 8 pounds.

Searching for answers, finding solutions

Finally, I heard about Lipedema from a friend. I researched and joined Facebook pages related to the condition. I was so relieved to find that I was not alone, but I was also a little skeptical that this was real. However, by the end of 2020, I knew it was time to do something about my condition. The conservative measures were not working, and I started to think that surgery would likely be the best option and began researching doctors and outcomes.

In February 2021, I took my Lipedema research to my PCP and asked her to watch YouTube videos about Lipedema. She wrote a letter of medical necessity, and after being evaluated by specialists, I went for my first surgery in May 2021. I had my arms, posterior hips, and legs done. The surgeon was able to remove all of the painful Lipedema tissue. I can finally see the muscles in my arms and legs that I worked so hard to build. I woke up from surgery with less pain than before. Within two weeks, I was able to start lifting weights with my upper body.

The second surgery was three months later in August. I had anterior legs and abdominoplasty (tummy tuck/TT) surgery and had 15 pounds of fat removed from my legs and 12 inches of skin from my stomach. The TT was more difficult than I imagined. Overall, I lost 50 pounds total after both procedures.

One year post-surgery, I have kept the weight off and my legs, arms, and tummy are feeling great. I am still careful about eating healthy, but the days of worrying that I will gain 10 pounds if I look at dessert are gone hopefully for good. But I stay vigilant just to be sure. I continue to lift weights and just got a Peloton bike to add to my workout routine.

My daughter doesn’t have Lipedema, but she is only 20 and has hormonal problems similar to those I had when I was her age. While rare in men, it can happen, and I believe that my 25-year-old son has Lipedema. For now, I will keep working to find help and raise awareness for a disease that can’t be cured but that inflicts so much suffering in deep emotional, and painful ways. 

Juli is a Business Entrepreneur from Woodinville, WA.

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Information presented on the Lipedema Foundation website should not be considered, or used as a substitute for, professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.