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Lipedema is a chronic condition involving abnormal fat deposits. This mostly occurs in your legs, but can also affect your arms.

Lipedema can also cause considerable physical discomfort and chronic pain. Sometimes it is mistaken for cellulite, though it is a different medical condition that is more serious and persistent. But you can work with your doctor to manage the condition with treatment.

Read on to learn more about lipedema, how to talk with your doctor about it, and what treatments may help.

A 2019 research review showed that lipedema is a progressive and chronic condition that is marked by abnormal fat distribution, particularly in your limbs. It almost only affects women and can cause significant disability and distress. The exact occurrence rate is currently unknown.

In lipedema, abnormal amounts of fatty tissue accumulate, usually on both legs, and in some cases, your arms. Your skin can be sensitive, swollen, and feel spongy. Bruising may be common, and chronic pain is not unusual.

The Genetic and Rare Diseases Information Center says that symptoms of lipedema typically start during puberty, pregnancy, or menopause. Symptoms can vary and can include:

  • abnormal fat deposits
  • easy bruising
  • pain
  • loose skin

The fat deposits often get worse as time goes on, but some people have stable lipedema. In the early stages of the condition, above your waist, your body does not have many changes. As the condition progresses, these areas of your body can also become larger:

  • chest
  • torso
  • abdomen
  • arms

People with lipedema can also experience depression, difficulty coping, and reduced quality of life.

The exact cause of lipedema is currently unknown. It is assumed that there is a genetic component to it, since a 2020 research review showed that up to 60 percent of people with lipedema have a first-degree relative with it as well. Because it often starts during times of hormonal changes, it’s also thought to be linked to estrogen.

It is hypothesized that genetic factors combined with hormonal, microvascular, and lymphatic disorders, may contribute to lipedema.

More research is necessary to find out the exact causes of lipedema.

Diagnosing lipedema is done through a variety of factors. Reported symptoms and clinical examination are a large part of the diagnostic process, and various tests may also be ordered to confirm or explore the diagnosis. These tests can include:

Other conditions may need to be explored to ensure that lipedema is the correct diagnosis. This is where various imaging tests may be helpful.

Main criteria for making a lipedema diagnosis include:

  • bilateral, symmetrical presentation of abnormal fat deposits, where your feet are not affected
  • persistent enlargement of your lower limbs, even with weight loss
  • little to no pitting edema
  • pain and easy bruising
  • loose skin

Treatment for lipedema typically focuses on addressing the symptoms, preventing any progression, and improving mobility and quality of life. The degree and extent of treatment depend on how advanced the lipedema is and how much distress it causes. Treatment can be conservative or more intensive.

Conservative treatment options include:

  • Manual lymph drainage. These massage therapy techniques may be needed regularly to help reduce swelling and discomfort.
  • Compression therapy. Sometimes conducted by wearing custom-made compression clothing, this therapy may help relieve pain and discomfort.
  • Physiotherapy and exercise therapy. Water exercise is particularly helpful because of the low pressure on joints, and water pressure helps with lymph drainage.
  • Psychosocial therapy. Counseling can help you cope with the impact of the disease as well as associated conditions like eating disorders
  • Dietary counseling and weight management. People with lipedema are at risk of morbid obesity, which makes lipedema severe. But anti-inflammatory diets may help.
  • Patient education. Educating individuals with lipedema about the condition and its treatments can help them manage the condition, make informed choices, and seek support when needed.

If conservative treatments do not help the lipedema and contribute to a negative quality of life, liposuction might be an option. There are various factors that you and your doctor will consider before making a decision about whether it’s an appropriate treatment, and insurance may not always cover it.

In advanced stages of lipedema, especially with comorbid lymphedema, liposuction is not effective. Surgical debulking may be necessary. This is called dermato-fibro-lipectomy.

The origins of lipedema are still being studied, but there are some risk factors that are thought to be associated with lipedema. They include:

  • being female
  • having family members with lipedema, especially first-degree relatives
  • going through puberty or being pregnant (the hormone changes)

It’s important to note that the stress of enduring racism, discrimination, and other racist systems may play a part in developing lipedema beyond genetic factors.

Lipedema can be misdiagnosed as obesity or other conditions. An early, accurate diagnosis is crucial to appropriate treatment.

Early diagnosis is important because this is when lipedema can be best managed with more conservative approaches. With a multidisciplinary treatment team, the outlook is favorable. It’s important for your medical team to consist of:

  • vascular medicine doctors
  • endocrinologists
  • obesity specialists
  • plastic surgeons

While there is currently no cure, lipedema can be managed and the symptoms minimized.

Lipedema can be uncomfortable, even painful, and distressing, causing not only physical symptoms but also affecting emotional health and quality of life.

Lipedema is not a curable condition, but there are ways to manage the symptoms, slow the progression of the condition, and improve overall health, all of which may impact lipedema.