Lipedema: When Your Fat Legs Aren’t Just Fat
Why can’t I lose weight? Why, no matter how much I exercise, do my legs continue to be fat?
To many women in their 30’s and beyond, these questions are nothing new. However, for as many as 10 million to 17 million people in the United States alone—mostly women—the cause of their distress may actually be an undiagnosed condition called Lipedema.
What is Lipedema?
Lipedema (sometimes called lipoedema) is a chronic disorder of adipose tissue generally affecting the legs, which causes the legs--and sometimes also, the arms--to accumulate fatty tissue. Lipedema can very rarely affect men, but the vast majority of people with this condition are female. Lipedema is distinguished by several unique characteristics: most notably, a distinct and unusual pattern of fat accumulation in the legs. Lipedema it involves the excess deposit and expansion of fat cells in an unusual and particular pattern that serves as the primary criteria for diagnosis.
Women with Lipedema exhibit thick, “trunk-like” legs with bilateral, symmetrical excess fat, deposited from the waist to a distinct line just above the ankles. In cases of Lipedema, there is a marked line of distinction at the ankle, and the feet are normal in size with little to no swelling. Lipedema can occur in women of all sizes, from the seriously underweight to the morbidly obese.
Unlike normal fat, lipedematous fat generally cannot be lost through diet and exercise. Causes for Lipedema are mostly unknown, although it appears to be somewhat hormone-linked, as it usually is triggered at puberty. Lipedema can also trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery, i.e., surgery of the uterus, ovaries, or fallopian tubes or any surgery with general anesthesia. Some other scientists theorize that Lipedema may be linked to high levels of cortisol, as it can also be triggered by an extremely stressful situation such as a death in the family or a divorce.
Do I have Lipedema?
There is no blood test or other standard test for Lipedema. Instead, Lipedema is diagnosed upon physical examination by a trained physician. Even though lipedema was first formally identified in the U.S. at the Mayo Clinic in 1940, most physicians are not readily familiar with the disorder.
Classic symptoms of Lipedema include:
1) Increased symmetrical fatty tissue in the hips, thighs, medial knees, lower legs and ankles (bilaterally). It can affect the upper arms. Hands/feet are spared.
2) Increased pain, tenderness to touch
3) Bruises easily
4) Swelling (edema) can occur in the limbs
5) Decreased skin temperature in the limbs
6) Diet and exercise have little effect
7) Often occurs during puberty and pregnancy, and can increase with menopause
8) Hypermobile joints
9) Fragile vascular membranes
10) Psycho-social issues: depression
11) Low iron, vitamin D, and vitamin B 12
How is Lipedema treated?
Though diet and exercise can make you thinner on top, frustratingly, for women with Lipedema, their lower half will most likely stay the same. Currently, the most common treatment in the United States to ease the pain caused by Lipedema is called complete decongestive therapy (CDT), which includes manual lymphatic drainage and compression on the legs. This treatment is generally quite effective in relieving some painful symptoms, however, treatments must be performed consistently, at least two to three times per week, and when treatments are discontinued, the symptoms invariably return.
In the United States, treatment for Lipedema has remained conservative, with CDT, compression garments, and exercise as the standard line of defense. Liposuction as a treatment for Lipedema was actually developed in Germany in the late 1980s, and is becoming common and routine for Lipedema treatment in Europe. Until very recently, very few physicians in the United States have treated Lipedema with surgery.
New hope for Lipedema treatment:
However, a new surgery has been developed by NYC cardiovascular surgeon Dr. David Greuner, which involves injecting a liquid solution into the legs that numbs the area and reduces blood loss before unwanted fat is removed. This new surgery is known as tumescent lymph sparing liposuction and is believed to be the only truly successful long term treatment for Lipedema. This procedure has produced promising results in the reduction of pain caused by Lipedema and lowers the need to seek other therapies like compression.
“So far, very few doctors are treating Lipedema because of a lack of education about the condition,” says Dr. Greuner. “Although Lipedema has been treated for years in Europe, it is a relatively new condition to the medical community in the US. Many women suffering from Lipedema, which number an estimated 11% of the female population are often surprised to learn that they have a disease that can be treated.”