What is Lipedema?

No, lipedema is not the same as obesity. While lipedema does involve an excess accumulation of fat, it is a distinct condition that is not caused by overeating or lack of exercise. In fact, many people with lipedema have a healthy diet and exercise regularly.

The exact cause of lipedema is unknown, but it is thought to be related to hormonal factors and genetics. It is also believed there may be links to hypermobile joints, vein inflammation, MCAS, macrophage associated disease, and leaky gut. Lipedema often runs in families and is more common in people assigned female at birth than those assigned male at birth. Those assigned male at birth with lipedema are typically diagnosed with hypermobility as well.

It is believed that 11% of people assigned female at birth, that is 1 in 9, have lipedema.

It is believed that 1-2% of people assigned male at birth have lipedema.

If these numbers are valid and applied to the US population, then millions of people in the US have lipedema.

Yes, lipedema can be painful, especially in the later stages of the condition. The affected areas can be tender to the touch, and the excess weight can cause strain on the joints and muscles, leading to discomfort and pain.

It is important to note that lipedema is often underdiagnosed, so it may take some effort to find a healthcare provider who is familiar with the condition. You may need to advocate for yourself and seek out multiple opinions before receiving a proper diagnosis.

Lipedema is typically diagnosed through a physical exam and medical history. Any doctor can diagnose lipedema if they have the knowledge.

People often have luck with vascular surgeons, cardiologists, plastic surgeons, dermatologists, lymphologists, phlebologists, and occupational therapists.

Lipedema is often classified into different stages based on the severity and progression of the condition. Stages 1-3 are the most commonly used, but there are variations in the staging systems used by different healthcare providers and in different parts of the world:

Stage 0: Symptoms such as leg pain or tubular shape of legs prior to puberty.

Stage 1: The skin surface appears smooth, and there is no visible edema. The affected area may feel soft and doughy to the touch, and there may be some discomfort or sensitivity to pressure.

Stage 2: The skin may appear rough or uneven, and there may be small nodules or fatty deposits under the skin. The affected area may appear enlarged, and there may be moderate edema and tenderness.

Stage 3: The skin may appear more irregular and nodular, and there may be larger fatty deposits or fibrotic tissue under the skin. There may be significant edema and pain, and the affected area may be sensitive to even light touch. Sometimes a cuff develops at wrists and/or ankles. Sometimes a fat pad develops at the knee or overhang develops in hips, abdomen, etc.

Stage 4: In the most advanced stage of lipedema, there may be severe fibrosis, skin thickening, and lymphatic complications. The affected area may be very large, and mobility may be severely impaired. There may also be significant pain and other associated symptoms. At this point, many people are diagnosed with lipolymphedema, which Dr. Herbst would refer to as stage 3 with lymphedema.

It is important to note that the progression of lipedema can vary from person to person, and not everyone with the condition will progress to the later stages. However, early diagnosis and treatment can help to manage symptoms and prevent the condition from worsening.

There are many misconceptions about lipedema tissue. Lipedema can be present head to toe, however, some types are classified based on common presentation.

Type I: The fat is between the navel and the hips. It often covers the pelvis and buttocks.

Type 2: The fat is around the pelvis and down to the knees.

Type 3: The fat begins at the pelvis and continues down to the ankles. A person with this stage may have a prominent cuff of fat at the ankle.

Type 4: The fat spreads from the shoulders down to the wrists.

Type 5: The fat is predominantly on the calves.

There are also Types A and B

Type A: Allen and Hines Phenotype

In type A, the ankles are small and the leg gets gradually bigger moving up.

Type B: Moncorps “Rusticanus”

In type B, the calves are a tubular shape, with ankles similar size to the calf.

Lipedema is a loose connective tissue disease predominantly in people assigned female at birth.

With Lipedema, fat cells absorb excess lymph fluid, creating nodules.

Lipedema is identified by increased nodular and fibrotic adipose tissue that often develops at times of hormone, weight, and shape change including puberty, pregnancy, and menopause.

Lipedema tissue is driven by different stem cells than obesity fat. These stem cells are driven by an overactive gene pathway that is often found in some cancers.

There is currently no cure for lipedema, but there are conservative treatments that can help manage the symptoms. Some common treatments are manual lymphatic drainage, compression therapy, and surgical procedures such as liposuction.

In the early stages, people with lipedema typically do not have diabetes, high cholesterol, or high blood pressure, but these can develop later on.

Diseased cells need more blood to survive or they become necrotic. They often attach to large muscle groups causing muscle atrophy because of diverted blood flow. Particularly in later stages, this can become a concern.