Are Your Legs Painful? WARNING: You May Have Lipedema

What is lipedema? Lipedema is a fat deposit disorder. Lipedema is a widespread condition also known as “painful fat syndrome”. Lipedema is often confused with obesity. Currently, instead of being diagnosed accurately with lipedema, a significant number of patients are being misdiagnosed as being obese. Therefore, you may not be fat--you may just have lipedema. To make matters even more confusing, patients may have lipedema with or without overlaying obesity.

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How common is lipedema? Due to the difficulty in differentiating obesity from lipedema, lipedema has been underdiagnosed in the US. It is estimated that about 17 million women in the US have lipedema. One study in Germany determined that lipedema affected 11% of all adult women. What body parts are affected by lipedema? Typically, the legs and hips are affected by lipedema. However, in severe lipedema cases, the torso and arms may become involved. What are the signs and symptoms of lipedema? 1) Symmetrical enlargement of both legs from the hips to ankles (gynoid fat) 2) Disproportionately large legs compared to the knees 3) Disproportionate hips, stomach or buttocks 4) Legs that bruise easily 5) Leg pain 6) Buttock pain 7) Fat that gathers and drapes at the knees 8) Obese lipedema patients who undergo bariatric surgery lose fat primarily from the waist up How is lipedema diagnosed? Lipedema is best diagnosed through physical examination. Physical examination in lipedema patients can reveal nodules within the fat. Often, if the patient develops fluid in the affected extremity, these nodules are no longer palpable. A test called lymphoscintigraphy is sometimes performed to examine the lymphatic system. However, lymphoscintigraphy does not diagnose lipedema. The lymphoscintigraphy test just determines if the lymphatic system is affected. Thus, lymphoscintigraphy may be able to differentiate between lipedema and lipo-lymphedema. When can lipedema be diagnosed? Lipedema can be diagnosed in early pre-puberty if painful, inner thigh pads are present. What are the causes of lipedema? There is a genetic component to lipedema. Hormones also appear to play a role in the development of lipedema. Lipedema edema has been shown to be related to estrogen and progesterone imbalances. This theory is because most lipedema cases occur during times of hormonal shifts mostly in females. What triggers lipedema? Lipedema can be triggered by anything that can alter hormonal imbalances. Known lipedema triggers include puberty, pregnancy, peri-menopause, menopause and following gynecologic surgery. Stress can also increase cortisol levels that can, in turn, cause lipedema. When does lipedema usually start? The onset of lipedema can occur whenever there are hormonal imbalances. Therefore, typically, lipedema presents during puberty, pregnancy, or menopause. Are there any risks factors for lipedema? Yes, risk factors for lipedema include being hormonal imbalances, positive genetic history, and being overweight or obese. Does lipedema get better over time? No. Typically, lipedema patients get worse over time. As lipedema progresses, patients gain weight in their lower body. It is believed that as the fat cells get larger, the fat cells compress the surrounding lymphatic channels and lead to secondary swelling of lymph or lymphedema. This secondary lymphedema is also called lipo-lymphedema. As the fat cells continue to enlarge, they may also affect the blood vessels causing circulatory system problems. Unfortunately, as the lymphedema or lipo-lymphedema gets worse, many lipedema patients become less mobile. Some lipedema patients progress to develop Dercum’s disease. Dercum’s disease is characterized by painful lipomas. What are the possible side effects of lipedema? Side effects of lipedema include depression, anxiety, and pain. What is the difference between lipedema and lymphedema? Lymphedema is typically asymmetrical and affects one limb, whereas lipedema is usually symmetrical. Lymphedema often occurs after a surgery that affects the lymphatic system, whereas lipedema occurs after hormonal shifts. In lymphedema, there is pitting edema (when you press on a swollen leg, you leave a dent), whereas in lipedema there is non-pitting edema. In lymphedema, there is no pain initially, whereas, in lipedema, there is pain in the affected areas. In lymphedema, there is a possible history of skin infections or cellulitis, whereas, in lipedema, there is usually no history of cellulitis. In lymphedema, there is usually no family history, whereas, in lipedema, there is often a family history of lipedema. What are the treatments for lipedema? Unfortunately, treatment does not typically result in complete resolution or cure of lipedema. 1) Medical treatment of lipedema. Presently, there is no proven medical cure for lipedema. Various techniques are used to reduce the swelling and therefore, the progression of lipedema into lipo-lymphedema. a) Weight loss and exercise: have been proven not to decrease the fat associated with lipedema, but to reduce fat in general. Fat reduction can reduce the compression stress on the lymphatic system. b) Physiotherapy c) Exercise d) Manual lymphatic drainage e) Compression garments: many lipedema patients cannot tolerate compression garments because their underlying fat is so painful. Since most lipedema patients cannot wear compression garments, lipedema patients are at an increased risk to develop lipo-lymphedema, skin infections, blood infections, and fibrosis or scaring under the skin. 2) Surgical treatment of lipedema. Surgical options include liposuction and lipectomy. Surgery cannot cure lipedema, but can decrease the pain associated with fat caused by lipedema. Also, by removing fat cells in the leg, leg liposuction surgery can reduce some of the stress exerted on the lymphatic channels due to fat accumulation. The National Healthcare System of the United Kingdom listed tumescent liposuction as the only effective treatment for lipedema. There are two accepted forms of surgical treatment for lipedema: tumescent liposuction and water jet assisted liposuction. During tumescent liposuction, initially, tumescent solution is injected. Tumescent solution consists of lidocaine (a local anesthetic to minimize pain) and epinephrine (a medication to reduce bleeding). After the tumescent solution is allowed to sit in place, a small liposuction cannula is inserted and lipedemous and normal fat are aspirated. Water Jet Assisted liposuction is another excellent treatment for fat associated with lipedema. During Water Jet Assisted liposuction, a specialized cannula exerts a pressurized column of saline to dislodge fat mechanically. Once the fat is displaced, the fat is gently removed. Water Jet Assisted liposuction is considered more gentle than traditional tumescent liposuction and may cause less damage to the lymphatic system So if you think you have lipedema and want treatment, please contact Dr. Katzen’s office today. For your convenience, Dr. Katzen has offices in Beverly Hills, CA . We look forward to seeing you.