Lipedema: No, it’s not a typo. It’s a real condition that’s often overlooked or confused with lymphedema. And its hallmark is the development of too much fat below the waist.
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“Because women with lipedema are often overweight, doctors are often dismissive,” says vascular medicine specialist John R. Bartholomew, MD. But lipedema is not obesity, and it’s not always a woman’s fault that she has it.
“Doctors often don’t understand that exercising and dieting won’t get rid of this lipedema fat,” he says.
Lipedema means “fluid in the fat” and is sometimes known as the painful fat disorder. It causes excessive fat deposits on the legs, thighs and buttocks and upper arms.
“Women with lipedema frequently feel like they have two bodies,” Dr. Bartholomew explains. “They may have a typical upper body, chest and abdomen. But at their waist and below, their lower half is out of proportion to their upper half. They often have difficulty finding clothes that fit because it’s like they are two different people.”
It occurs almost exclusively in women and begins:
- Around the time of a woman’s first menstruation.
- During pregnancy.
- Later in life (it may be related to hormone therapy)
While doctors first recognized lipedema in the 1940s, experts still don’t know what causes it. “We think there may be a gene because it does seem to run in families,” Dr. Bartholomew says. “Often, I’ll ask a woman if her mother or other females in her family had a similar body shape.”
A case of mistaken identity: lipedema symptoms vs. lymphedema symptoms
Lipedema isn’t rare, but it’s rarely diagnosed, Dr. Bartholomew points out: “Doctors don’t know about lipedema — it’s that simple.”
Yet there are many telltale symptoms, including:
- Fat deposits on the legs, thighs and buttocks.
- Painful legs.
- Swelling that doesn’t indent if you apply pressure to it (called non-pitting edema).
- Swelling that persists all day, even when legs are elevated.
- Bruising easily.
- Small spider or varicose veins, especially around the ankles.
- The ankle cut-off sign, which looks like someone put a tourniquet around the lower ankles (the feet are spared).
“Most doctors think obesity, heart failure, kidney failure, liver disease, thyroid problems or medications cause the leg swelling,” Dr. Bartholomew says. “Or they think it’s lymphedema, which is swelling that usually occurs in one arm or leg.”
While lipedema and lymphedema both do involve swelling, that’s where their similarities end.
Lymphedema treatments won’t help someone with lipedema, so a correct diagnosis is crucial. Some patients with lipedema develop secondary lymphedema (referred to as lipo-lymphedema), where fat growth interferes with the lymphatic system. Lymphedema treatments may help some of the symptoms, but it still won’t resolve the lipedema.
Finding effective lipedema treatments
While there are no proven medications for lipedema, Dr. Bartholomew says there are some lifestyle changes and treatments that can help:
- Diet: A heart-healthy diet may slow the growth of fat deposits.
- Exercise: Walking, swimming or biking may reduce painful symptoms.
- Compression garments: These tight garments can provide relief (if they’re not too tight or painful to wear).
- Physical and occupational therapy: Patients can learn how to do manual lymphatic drainage therapy. “This gentle form of skin stretching and massage may help with symptoms or help contain the fat,” Dr. Bartholomew says.
- Liposuction: “Some doctors use a water jet to disconnect the fat and prevent damage to the lymphatic vessels, which could cause lymphedema,” he explains. “Other types of liposuction appear to work as well.”
Dr. Bartholomew also emphasizes that finding emotional support can be huge — especially from other women living with lipedema. To connect with others about the condition, visit:
- Lipoedema Ladies, where women support each other and share ideas that work for them.
- Fat Disorder Research Society, where you can access reliable lipedema information from world-renowned lipedema specialists.
Lastly, try not to be intimidated by a dismissive doctor. Chances are, the doctor simply doesn’t know what lipedema is.
In those cases, he encourages women to give information about lipedema to their physician. “If you have a physician who is understanding and will look at it, then stay with that physician,” he recommends. “If they tell you, ‘No. You’re just fat and not following your diet,’ get a different doctor.”