What is lipedema?

Lipedema (or lipoedema, the European spelling) has also been called “painful fat syndrome” and is a chronic disease found almost exclusively in females. Lipedema was given a name in 1940 by Drs. Allen and Hines at the Mayo clinic. It is characterized by bilateral, symmetrical nodules of adipose tissue found primarily in the thighs, hips and calves which swell when standing over long periods of time. Other characteristics include hematomas or petechiae (bruising) which can easily arise from the slightest touch due to the increased fragility of both vascular and lymphatic capillaries. It is often misdiagnosed as lymphedema or obesity. Its cause is still unknown, though a genetic component is suspected. Other possible causes include metabolic, inflammatory or hormonal involvement.

Thank you so much to Lipedema Products for allowing the use of their illustrations below.

Lipedema consists of three stages which characterize skin and tissue appearance; the fourth stage is development of secondary lymphedema on the feet or hands called lipolymphedema.

In the first stage shown below, the skin is smooth, and the subcutaneous layer is thickened, soft, with enlarged hypodermal SAT (subcutaneous adipose tissue) and even structure. The hypodermis or subcutaneous fat layer, which is the innermost layer of the skin, lies between the muscles, bones and the top layer of skin and is composed mainly of fat. The skin may be cool in certain areas as a result of functional vascular imbalance. Swelling may increase during the day and resolves with rest and elevation. In the second stage, there are subcutaneous nodules, and the skin’s surface becomes uneven, with indentations of the skin, similar to a mattress, containing larger mounds of SAT that grow as non-encapsulated masses, lipomas (a benign tumor of fat tissue) and angiolipomas (a benign tumor of fat and blood vessels). Swelling increases during the day, with less resolution after rest and elevation.

In the later stages of lipedema, as shown below, there of obvious lymphatic involvement. In the third stage, large extrusions of tender tissue (skin and SAT) cause overhanging protrusions of fat, especially on the thighs and around the knees. Pain symptoms increase, and immobility may develop. In the fourth stage, fat deposits are so large and extreme that the entire lymphatic system is affected, leading to severe swelling, protruding growths, and even leaking from the skin. Lymphedema is present, and swelling is consistently present.

In all stages, small nodules can be palpated in the SAT that feel like Styrofoam balls in a bag, or frozen peas. In all stages, pain is usually present to palpation but can become intense. Altered mobility can occur in all stages, stressing the joints.

Beltran, K. & Herbst, K. (2017). Differentiating lipedema and Dercum’s disease. International Journal of Obesity, 41, 240–245.
Herbst, K., Mirkovskaya, L., Bharhagava, A., Chava, Y., & Te, C. (2015). Lipedema fat and signs and symptoms of illness, increasing with advanced stage. Archives of Medicine, Vol. 7, No. 4:10.
Wright, T. (2016). Introduction to lipedema. Vein Magazine, 28-30.

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