Let’s Chat: Lipedema

Often confused with lymphedema, Lipedema is a condition that affects many women but remains largely unrecognized and misdiagnosed. Unlike typical weight gain, Lipedema is abnormal fat accumulation that creates a distinctive, disproportionate appearance in the legs while sparing the upper body. Limited public awareness, coupled with few research-backed treatments, can lead to worsening symptoms as well as physical and emotional distress. Knowledge and open discussions are crucial steps to finding treatment and support. In our latest Let’s Chat: Lipedema, Dr. Celia Egan and Dr. Diana Bitner provide valuable insights into symptoms and evidence-based treatments, empowering you to take control of your health.   

What is Adipose Tissue?

Adipose tissue is body fat. Body fat is found within the body’s connective tissues (between bones and muscles). It has nerve cells, blood vessels, and communicates with the rest of the body through hormone signals.

What is Lipedema?

Lipedema is a chronic medical condition characterized by a symmetric buildup of adipose tissue (fat) in the legs and arms. The rapid expansion of fat in these areas is often seen during times of hormonal shifts, including puberty, pregnancy, menopause, the start of hormonal birth control, and hormonal therapies. Unlike other types of fat, Lipedema causes pain and swelling, limiting daily function and routines, and may be accompanied by an unusual texture (the feeling of rice or peas) beneath the skin’s surface. The disease primarily affects women and is relatively common as well (1 in 9 women have Lipedema).

What are the Stages of Lipedema?

Lipedema stages are based on the amount of adipose tissue and the degree of nodules (“bumps” under the skin that feel like rice and peas). 

• Stage 1: ​​Smooth skin with an increase of enlarged adipose tissue. 
• Stage 2: Uneven skin with indentations and larger mounds of adipose tissue that can be seen and felt.
• Stage 3: Large buildups of adipose tissue that cause deformations (typically around the thighs and knees)
• Stage 4: Typically categorized by large overhangs of adipose tissue on legs and arms. Lioplymphedema can also develop.

Types of Lipedema

There are also different types of Lipedema depending on where adipose tissue builds up. These include: 

• Type 1: adipose tissue in the hips and buttocks 
• Type 2: adipose tissue from the buttocks to the knees 
• Type 3: adipose tissue from buttocks to ankles
• Type 4: adipose tissue from buttocks to ankles + arms 
• Type 5: adipose tissue in the calves only 

Why is Lipedema Painful?

At its core, Lipedema is the inappropriate expansion of adipose tissue. This diseased tissue triggers an immune system response, forming scar tissue within the body’s connective tissue. The mix of fat cells and scar tissue causes the connective tissue to malfunction; the nerves do not work correctly, and blood and other liquid flows are disrupted, leading to inflammation and swelling. 

Who is at Risk? 

More research needs to be done on Lipedema risk factors. While family history is a risk factor, genetic reasons aren’t fully understood. 

What Treatment Options Are Available? 

The gold standard for treating Lipedema is medical liposuction to remove diseased fibrotic tissue and adipose cells. While most people think liposuction is a cosmetic procedure, medical liposuction to treat Lipedema is more intensive. It typically involves the removal of 10-12 liters of tissue, and finding a surgeon, preferably a plastic surgeon, who understands how to handle this type of tissue is essential. Before considering surgery, it is also important to consider your phase of ovarian function. If you are planning a pregnancy, for example, you will want to wait on surgery until after delivery and recovery when your hormones return to normal levels. Even with medical liposuction, Lipedema may come back. Recurrence is typically seen during times of hormonal flux (puberty, pregnancy, menopause, or hormone therapies such as estrogen blockers). 

Other treatments for Lipedema include compression garments, massage, vibration boards, and lymph drainage. These methods, however, are less effective than medical liposuction. Similarly, exercise has not been shown to reduce the expansion of adipose tissue, and the risk of injury is higher during cardio-based workouts.

Five Questions You Can Ask Your Healthcare Provider

1. Do I have Lipedema? Remember, this is a clinical diagnosis; finding a provider that understands the disease and its symptoms is important. 
2. Do you have a Lipedema specialist to review my symptoms?
3. Would I be a candidate for weight loss medication to treat my Lipedema?
4. What resources are available to assist with lifestyle changes?
5. Do you have a trusted plastic surgeon?

Keep the Conversation Going 

Whether you’re living with Lipedema or seeking knowledge to support loved ones, we want you to know that you do not have to suffer in silence! You do not have to be told to just “exercise harder” or “eat better” again. Our team understands that Lipedema is different from other types of fat buildup, and it does not improve with lifestyle changes alone. Finding a trusted healthcare provider knowledgeable about treatment options is essential. At true., Dr. Egan can provide Lipedema consultation for patients in seven states (Michigan, Ohio, Illinois, Wisconsin, Florida, Colorado, and Alabama) to discuss treatment plans and how to cover your treatment. Reclaim your health journey today!

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