Patient Stories

Coming to terms with Lipedema

By Jeanne

Another year, another search for maxi dresses and wide-leg pants. It seems that as each year passes, there are fewer things that I can wear comfortably or attractively. As an early teen, I danced with a summer theater group. My legs were bigger than everyone else’s and it was very clear I was not going to be a tall, willowy blonde. I thought it was just muscle. Apparently not, as my legs got bigger and more like my mother’s. Genetics, she said. Lose some weight, she said (difficult to hear from an overweight mother with undiagnosed lipedema). Then doctors said it (you’d be much healthier and better looking with a 15-20 lb. weight loss – yes, from a doctor). 

Later, I married and was on the pill. I continued to gain weight, lose weight and gain it back again. My legs never went down. My self-confidence was low and my self-disgust was apparent. After a few years, we ironically discovered that we’d need help to conceive. I went on and off of fertility drugs for six years. My legs got even bigger. I got pregnant in 1996 and my legs ballooned. I lost most of my baby weight, but not the weight in my legs. I went on antidepressants. 

I tried bariatric surgery at 41 and was initially very happy with the results; I lost 110 lbs. and my legs went down a little in size. I was still a size 8 on top and a 12 on the bottom. The hourglass was still running downward. I gained back 60 lbs. over 15 years. It was difficult to move the way I did when I first had bariatric surgery, and I became even more depressed. Menopause started, and my legs grew so heavy so quickly that I was worried. 

A friend asked me if I had ever heard of Lipedema and suggested I research it. I did, and while I was happy that I wasn’t alone, it was a difficult moment. I went to a vascular surgeon who formally diagnosed me and I cried in his office when he said that it wasn’t my fault. A weight, if you will, was lifted from my shoulders. It didn’t help resolve the problem, but it was a start. 

I started doing research and meeting people at conferences. I wasn’t alone. There are no Lipedema surgeons where I live so I have to weigh the pros and cons of traveling to get liposuction surgery to treat my Lipedema. I developed arthritis in both knees and am a candidate for knee replacement. I’ve resolved to not “go there” until I’ve had liposuction. That road is long and scary and I’m still at the beginning. 

I am in the pool three times a week and in the gym three times a week. I try to eat better and do things that make me feel confident and active. My weight will always be a problem and I’ve come to terms with that. However, I am more than my size. I try to be kind and treat others with love and respect. I have other talents. I will not let this beat me.

Jeanne is an administrator and event planner from Medford, MA.

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