Lipedema

What is lipedema?

Lipedema is a long-term condition that causes abnormal fat buildup in the lower part of your body. Lipedema most often involves your butt, thighs and calves. Some people have it in their hips or upper arms. It doesn’t affect your hands or feet.

People sometimes confuse lipedema with having overweight or lymphedema, but these are different conditions. However, lipedema can lead to lymphedema. Many people with lipedema have a body mass index (BMI) higher than 35.

Dieting and exercising can cause you to lose weight in your upper body without changing the areas lipedema affects in your lower body.

Types of lipedema

You may have more than one type of lipedema at a time, depending on where you have symptoms. Types of lipedema include:

• Type I: Fat is between your belly button and your hips.
• Type II: Fat is between your pelvis and knees.
• Type III: Fat is between your pelvis and ankles.
• Type IV: Fat is between your shoulders and wrists.
• Type V: Fat is between your knees and ankles.

How common is lipedema?

Researchers estimate that 1 in 72,000 people have lipedema. But this number is probably low because lipedema can look like obesity or lymphedema. Another global estimate says 11% of females have lipedema. The condition is rare in males.

What are the symptoms of lipedema?

Lipedema symptoms include:

• Fat buildup in your butt, thighs, calves and sometimes upper arms on both sides of your body.
• Bumps inside the fat that feel like there’s something under your skin.
• Pain that can be from mild to severe and from constant to only with pressure.
• A heavy feeling in your legs.
• Swelling.
• Skin that bruises easily.
• Fatigue (feeling more tired than usual).

What causes lipedema?

The exact cause of lipedema is unknown. But the condition runs in families in 20% to 60% of cases, so you may inherit it. The condition occurs almost exclusively in women.

Lipedema may have a connection to hormones because it usually starts or gets worse during:

• Puberty.
• Pregnancy.
• Menopause.
• The time when you’re taking birth control pills, which contain hormones.

Having obesity doesn’t cause lipedema, but more than half of people with this condition have a BMI higher than 35.

What are the risk factors for lipedema?

You’re more likely to get lipedema if you:

• Being female.
• Have a family history of lipedema.
• Have a BMI higher than 35.

What are the complications of lipedema?

Lipedema can lead to:

• Difficulty with walking.
• Feelings of embarrassment and anxiety.
• Depression.
• Secondary lymphedema or lipo-lymphedema (blockage in your lymphatic pathway that allows a fluid called lymph to build up).
• Venous (vein) disease.
• Flat feet.
• Joint issues.
• Knock knees (knees touch each other when your feet are apart).

How is lipedema diagnosed?

A healthcare provider can diagnose you by doing a physical exam and collecting your medical history. Painful fat deposits make lipedema different from ordinary body fat, which doesn’t hurt. Also, people with lipedema have a clear difference in size between their unaffected feet and their affected legs.

What tests will be done to diagnose lipedema?

Providers don’t have a go-to test they use to diagnose lipedema. But they can do blood tests and imaging to rule out other issues or find other conditions you may have with lipedema.

Tests they may order include:

• Ultrasound, which uses sound waves.
• DEXA scan, a bone density test using X-rays.
• Magnetic resonance imaging (MRI), a scan using radio waves, a large magnet and a computer.
• Computed tomography (CT), a scan using X-rays and a computer.
• Nuclear medicine imaging, a scan that makes images from an injected radioactive substance.

Stages of lipedema

Lipedema slowly worsens with time in many people. Lipedema stages include:

• Stage 1: Your skin looks normal, but you can feel something like pebbles under your skin. You can have pain and bruising at this stage.
• Stage 2: Your skin surface is uneven and may have dimpling that looks like quilted stitching, a walnut shell or cottage cheese.
• Stage 3: Your legs can look like inflated rectangular balloons and you have large folds of skin and fat. Fat on your legs may stick out, making it hard to walk.
• Stage 4: You have lipedema and lymphedema at the same time.

How is lipedema treated?

Researchers haven’t found a cure, but lipedema treatments can help you feel better by reducing pain and inflammation. You can start with simple, noninvasive treatment for lipedema and switch to more complex treatments if needed.

Simple treatments

Lipedema treatment may include:

• Exercise. Swimming, biking and walking help improve mobility and reduce swelling. Exercising in a pool can reduce stress on your joints, too.
• An anti-inflammatory diet.
• A heart-healthy diet. This may help slow the progression of lipedema, especially if you learn about your condition early on. But dieting usually doesn’t get rid of lipedema like it does with other fat.
• Compression stockings.
• Skin moisturizer.
• Medications or supplements (amphetamines, phentermine, metformin, resveratrol, diosmin and selenium) can help with inflammation, swelling and other issues.
• Antioxidant herbal medicine.

Noninvasive treatments

Your provider may suggest noninvasive treatments for lipedema, like:

• Lymphatic drainage massage, a gentle form of skin stretching/massage.
• Complex decongestive therapy, a massage with a compression wrap afterward.
• Pneumatic compression device, which you wear on your legs.

Invasive therapies

Liposuction can remove fat and help with pain and mobility. Providers recommend wet-jet assisted liposuction because it’s less likely than standard liposuction to damage your lymph vessels.

If you have lipedema and a BMI higher than 35, your provider may recommend bariatric surgery.

Complications/side effects of the treatment

Any medicine or herbal supplement can have side effects. Talk with your provider if you have bothersome side effects.

Complications from liposuction or bariatric surgery may include:

• Swelling.
• Bleeding.
• Infection.
• Blood clots.

How long does it take to recover from lipedema treatment?

It can take four to six weeks to recover from liposuction. After bariatric surgery, you’ll need several weeks to recover as well. You may need to avoid strenuous activities for six weeks after either procedure.

What can I expect if I have lipedema?

Lipedema slowly (or quickly for some) gets worse over time for some people. Other people with lipedema have mild symptoms that don’t get worse.

Early diagnosis and treatment may help you avoid complications. Exercising and using compression stockings can give you a better outcome. Liposuction can help you feel better.

Having other conditions like depression, obesity or lymphedema can make lipedema worse. A provider can refer you for counseling, physical therapy or help managing your pain.

How can I lower my risk of lipedema?

Not knowing the exact causes of lipedema makes it hard to avoid. But if you have the risk factors of having lipedema in your family and being female, you can aim to stay at a weight that's healthy for you. Talk to your provider about ways to meet your weight goals.

How do I take care of myself?

Follow your provider’s instructions for the treatments they prescribe for you. If you’re not sure when to take medicine or how long to wear compression stockings, just ask. Keeping your regular appointments with your provider will help them see the progress you’re making from one visit to the next.

When should I see my healthcare provider?

Your provider may want to see you monthly or every few months to monitor your treatment. Contact them if you’re having issues with any of your treatments or if they don’t seem to be working in the time frame you discussed. Your provider can suggest a different treatment that may help.

When should I go to the ER?

Get immediate medical help if you have:

• Red, painful, swollen legs.
• Flu-like symptoms.

This could be an infection (cellulitis).

What questions should I ask my doctor?

Questions you may want to ask your provider could include:

• What type and stage is my lipedema?
• What’s the best treatment for me?
• How much has this treatment helped others with lipedema?
• How often do I need follow-up appointments?