I was diagnosed with lipedema today. Is there anyone out there that has this disease?

From my understanding it is the pooling of fat and Fluid in your legs.

My cardiologist described it as a redistribution of fluids and fats. Since I have had WLS, the fat is looking for somewhere to go and it has chosen my legs.

I currently wear support stocking to help control the pooling, but I am fighting a losing battle.

Does anyone have experience with this?

No, but I want to say I'm sorry this has happened, I've seen shows on TLC where people have had lymphedemas removed so they could walk, and they usually weigh quite a bit. I hope the fact they have caught it will help some how, but I have to admit I don't know a whole lot about them.

Edited December 3, 201411 yr by amponder

Lipedema is a fat disorder where a specific kind of fat cell that cannot be changed with diet or exercise accumulates mostly in the lower half of your body (some women also get it in their upper arms). Lymphedema is different in that it is an accumulation of Fluid in the legs. Lipedema can crush the lymphatic system (what moves the fluid) and once it's crushed the fluids can't move back up your legs so they stay and swell. Unfortunately liposuction is really the only cure for lipedema and in the US there are only a handful of surgeons who are skilled enough to perform it.

There are a number of facebook groups for Lipedema sufferers and they are very helpful, there are no doctors in my area (Boston of all places) but I am certain I have it from the images of confirmed patients compared to my own as well as texture and other issues. My calves are almost as wide as my thighs and I have no swelling as you normally see with edema, it's hard fat.

I recently posted my story about Lipedema in the Plastic Sugery forum...With 11% of women suffering from this disorder, I am sure there are many women here who have it and do not know it yet....It's so important to get the word out.

Is this more common with WLS patients who have had plastic surgery? I have a friend who suffers from this and she had brachioplasty, a tummy tuck (or lift?) and surgery on her upper thighs (which resulted in blood clots).

With a estimated 11% of women having this disorder I would say quite a few of these ladies have followed similar paths of surgeries not realizing the root cause to their issues.