In medical terminology, "edema" means swelling. For people who have lipedema (aka lipoedema), that swelling is caused by an overgrowth of fat cells, which can grow abnormally in size and number. The condition occurs almost exclusively in women and most often involves the buttocks, thighs, and calves, though the upper arms and torso can also be affected.Â
The cause of lipedema is unclear, but the condition tends to run in families. A gene associated with lipedema, AKR1C1, was recently discovered.Â
This medical condition often develops during times of hormone fluctuations, such as puberty, pregnancy, or menopause, so a hormonal connection is suspected. As we mentioned, inflammation also plays a role, as “a chronic inflammatory process leads to pain and disability, particularly in the extremities," says Dr. Schwartz.Â
There are four stages of lipedema, according to the Cleveland Clinic. Symptoms range from normal-looking skin with a pebbly texture accompanied by possible pain and bruising to rectangular-shaped legs with protruding fat pads that make walking difficult.
The classic presentation is a woman with a small upper body and a disproportionately fatty lower body—in fact, it's not unusual for someone with this condition to be a size 4 top and size 14 bottom. Swelling can occur from the hips down to the ankles, and the legs often look column-like.Â
Frequently, people with lipedema are misdiagnosed with obesity and told to go on a diet and exercise. "Awareness of lipedema is poor," says Dr. Wright. "Studies have shown that most physicians fail to recognize the disease in patients who present to them with symptoms. Many women are misdiagnosed as obese or having lymphedema."
Dr. Wright also cautions that "Some women are diagnosed with lipedema, even though they actually have another fat disorder. Finding a clinician who can recognize and expertly diagnose lipedema can be challenging. Specialists in venous, lymphatic, or physical medicine who focus on lymphedema can be very helpful in ensuring the proper diagnosis and treatment is started."
Lipedema fat doesn't readily respond to weight loss, Dr. Wright explains. "Lipedema fat is different biologically from non-lipedema fat. It is relatively resistant to weight loss and can proliferate with even a small calorie excess."Â
That's because these rogue cells have extra fluid, which distorts the skin and changes its size, shape, color, texture, and sensitivity. Even lipedema patients who undergo bariatric surgery lose fat primarily from the waist up, while the legs keep the fatty tissue.Â
This fat can be very tender and easily bruised if you apply pressure. The fat deposits can hurt for no apparent reason, and the skin can become thicker and less elastic. "The fluid buildup can cause chronic pressure and pain, especially if it's near a nerve," says Dr. Schwartz.Â
Lipedema also often has an unusual texture within the fat that can feel like rice, peas, or walnuts beneath the surface of the skin. Referred to as “lipedema pearls,” these nodules are intertwined in other connective tissues and firmly attached to the skin.
