Wednesday, December 30, 2009

What is lipedema/lipoedema and what does it look like?

Lipedema is a fat disorder, and can be distinguished by 5 characteristics.

  1. It occurs nearly exclusively in women

    It is inherited. My mother, although she never became obese, has the characteristic early stage legs. My dad played rugby, and is stocky, so I got it from both sides I guess.
  2. It can occur in women of all sizes, from the seriously underweight to the morbidly obese
  3. It involves the excess deposit and expansion of fat cells in an unusual and particular pattern - bilateral, symetrical and usually from the waist to a very distinct line just above the ankles. The feet are normal size.
  4. Unlike normal fat, lipedemic fat cannot be lost through diet and exercise. My plan is to lose as much non-lipedemic fat and then research my options.

These are not my legs. I will have to screw up the courage to post my own legs on the internet. I haven't worn dresses for years, so no one gets to see my legs in real life. I will do it though in the next few days, just for the sake of honesty. I know that I am more fortunate than others. There are ladies out there that suffer dreadfully. I know that there are many who can no longer wear jeans or trousers because their legs will not fit. I know that there are women out there who have lost their mobility.

Add to this a couple of other things. The fat can be painful. My husband loves having his legs and ankles squeezed. I simply cannot tolerate it.

The condition can deteriorate so that the expanding fat cells constrict the pathways of lymphatic vessels and sufferers can develop secondary lymphedema.

Doctors in the US and Canada are largely unaware of the condition. It seems to be more common in Europe, particularly in Germany and there are doctors there who specialize in treating the condition. There is not a lot of research being done into the condition.

Surgical options like liposuction have been extremely controversial. Frankly, in the past it has made the condition worse. The thrusting motion used in conventional liposuction tends to play havoc with the delicate lymphatic vessels in the lower legs. There is however a new method, the water-jet assisted method, which uses water and not heat or violent motion to break down the adipose tissue. There have been experiments done that show that it can be done without disturbing the lymph system. This is the method I think I will eventually go for but I am waiting, planning and doing a lot of reading.


  1. I too have lipedema. I am 58 and was just diagnosed two years by a nurse who thought I had lymphedema. I researched and found the above information. In two years, we have found one doctor who is an expert in lipedema. She is in California. Our greatest hope is make doctors aware of lipedema. There are many of us out there.

  2. You sound just like me. I will be 49 this year and weigh exactly the same. I have been hypothyroid for 15 years.I used to be an aerobis instructor,a body builder and was one test shy of a black belt in karate. My best friend owns a health club and is a titled body builder. She and I have tried everything toget my weight to go down. I have tried low,low,low calorie protien shake diets. I have exercised sometimes everday for months on end. Phenfen took of some weight before menopause- enough so I could have liposuction. That was 15 years ago. The result was uneven and though a slight correction was attempted I was lopsided. I saved my pennies and had it again 5 years ago. It didn't turn out any better. The surgeon was callous and blamed my skin for the lack of symetry. Now I am wondering if lipedema caused the bulges after lipo. I can't imagine how bad my legs would be if I hadn't had the lipo. I am hoping water jet lipo might be the answer.
    If it is less damaging it might work. Does anyone else out there gain weight immediatley after an injury- get bruised easily? I am very active and a little accident prone. When I bruise my legs the seem to swell every where with in a day or two but he swelling seems to hold on then become solid. Any one know a doctor in minnesota? I can't find anyone who knows about lipedema.

  3. To Anonymous above: I was diagnosed with lipedema by Dr. Nancy Hutchison at Sister Kenny Institute in Minnesota. She specializes in lymphedema; I don't know if there are others in in the state even more specialized in lipedema. I totally relate to the ski boot situation. Some winters ago, I swallowed my pride and talked to a custom boot fitter about helping me get a pair that fits. He did, however since then my legs have swollen further, and I'm afraid to even try them on (didn't wind up skiing last season). I look forward to reading more on this site!

  4. Lipoedema leads secondarily to a chronic lymphatic obstruction. The fat lobules and fat cells are embedded in the tissue where they are surrounded by tiny lymphatic and blood vessels.


  5. I have been suffering since a teenager and always had a tiny waste and upper body and huge elephant like legs. I have had two liposuction surgeries but it was agony and so painful and left me with waves of cellulite. A new surgery that is non invasive is Bodytite as the radiofrequency melts the fat and its sucked out you cant get alot of fat removed at one go as you need a local anasthetic but its gentle and helped me as my legs got so big I could not do yoga or enjoy walking. I am also wearing compression tights and notice I weigh 1.5 kilos less when I wear them. I have also noticed that alkaline diets help but somehow the legs always swell up with water and fat sooner or later.

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