Lipedema is derived from two words: “lip” (meaning fat) and “edema” (meaning fluid). It is a progressive or chronic syndrome characterized by symmetrical accumulation of fat, primarily affecting the lower limbs, leading to a disproportionate appearance between the upper and lower body. Lipedema predominantly occurs in females and is often misdiagnosed as bilateral lymphedema or obesity.
Lipedema falls into the category of fat-related disorders, which may include conditions like circumcise disease, Madelung’s disease, Dercum’s disease, lipomas, and various forms of lipomatosis; the relationship between these disorders is still under investigation.Lipedema is progressive and severity can increase over time. A stage one patient may progress to stage four, although some may remain stable as stage two.
While there is no cure through conservative or surgical measures, lipedema can be managed and significantly improved. Ongoing research suggests that lipedema may have a genetic component and can be triggered by hormonal changes such as puberty, pregnancy, menopause, or periods of significant stress.
Distinction from Obesity: Lipedema is distinct from obesity; many patients may be at or below their ideal weight and still experience lipedema symptoms in the lower and upper extremities.
Impact of Weight Loss: Weight loss, diet, and exercise can reduce fat volume but do not prevent or cure lipedema. It is common in lipedema patients to see significant weight loss yet retention of lipedema fat in the upper and lower extremities.
It Is Not Your Fault
Lipedema is frequently misdiagnosed as obesity. I find this to be the leading stigma that patients encounter with lipedema. From a young age, most lipedema patients have compared their bodies to others and have either concluded or been told that they are overweight. This can present so many challenges for young people. Imagine being a little girl or young woman and no matter what you do, your ankles, calves, and thighs don’t look like everyone else’s. The pressures of changing clothes in front of others, wearing shorts or swimsuits, or playing sports slowly chip away at your self esteem. It’s so often misconstrued as obesity, especially at a young age, and it may be years before these women learn more about lipedema. By the time I see most Lipedema patients for a consult, they’ve tried multiple weight loss modalities, seen vein specialists and often had invasive vein procedures. Many have only recently learned that there is a condition called lipedema and that there are excellent and effective treatments available.
Classic Features of Lipedema
Disproportionate and Symmetrical Fatty Enlargement: Progressive enlargement of the lower extremities, which can also include the hips and buttocks.
Pain and Easy Bruising: Patients may have a history of pain and easy bruising in the lower extremities, caused by intradermal breakage and hemorrhage from leaky capillaries or hematomas.
Stage Progression: Observations of classic stages one, two, or three of lipedema progression.
Ineffectiveness of Diet and Exercise: Patients typically have a history of dieting and exercising without any effect on lipedema fat or worsening of the disproportion.
Lipedema is a progressive disorder, but most patients do not progress through all stages. With significant experience in diagnosing and treating Lipedema, I can accurately stage a lipedema patient based on photographs or an in-person consultation.
Lipedema Stages
Stage One:
- Normal appearing skin with an enlarged hypodermis.
- Lower extremities may appear disproportionately large, but with no severe pain.
- Pain may occur in affected areas but improves with compression.
- Patients respond well to conservative management and liposuction.
Stage Two:
- Uneven skin texture with indentations in the fat.
- Larger mounds of tissue appear as encapsulated masses, most evident around the knees.
- Frequent and longer-lasting swelling, even with elevation.
- Increased presence of modular or lipomatous fat.
- Patients respond well to both conservative management and liposuction.
Stage Three:
- Thickening and hardening of subcutaneous tissue with large nodules and protruding fat pads, especially on thighs and around knees.
- Chronic swelling with significant fat overhanging knees and ankles, noticeable cuffing.
- High fat volume and lipomatous fat can lead to arthritis and mobility issues.
- Patients do not respond well to conservative management (e.g., wraps or compression garments) but may benefit from liposuction.
Stage Four:
- Most severe stage, commonly referred to as lipo-lymphedema.
- Challenging to diagnose due to potential lymphoma being masked by lipedema.
- Patients experience extensive swelling and hardening of the legs and arms, with large areas of skin overhanging joints.
- Generally does not respond well to most treatments.
Five Types of Lipedema
The stages of lipedema differ from the types. The types describe the affected areas while the stages evaluate how severely each area has been affected. These types give us a general way to describe the affected areas but there is a lot of room for overlap. Don’t panic if you don’t fall perfectly into one of these types. I encounter many patients who have lipedema fat distributions that do not exactly follow Types 1-5.
Type One:
- Affects the pelvis, buttocks, and hips.
- Fat accumulates on the upper part of the buttocks, creating a “shelf” appearance.
- Patients often have a smaller upper body and torso with a wide, disproportionate shelf at the buttocks.
- This fat is often painful to touch or compress.
Type Two:
- Affects the buttocks down to the knees, with folds of fat around the inner side of the knee.
- Patients typically present with a pear-shaped appearance.
- The buttocks, hips, and thighs appear very disproportionate to the rest of the body.
Type Three:
- Encompasses the entire lower body from the buttocks to the ankles.
- Patients may experience a heavy feeling in their legs and difficulty walking.
- Constant pain may occur, along with thick fat pads around the knees and folds of fat on the inner and outer thighs.
Type Four:
- Affects the arms, with up to one-third of patients having lipedema in this area.
- Can give a “batwing” appearance to the upper arms and affect the forearms, creating a cuff at the wrist.
- Patients often feel self-conscious about the lipedema in their arms, as it complicates clothing choices and is difficult to conceal.
Type Five:
- Affects only the lower legs, resulting in a “stovepipe” appearance without typical contours at the knee and ankle.
- Patients experience cuffing at the ankle and significant discomfort in the lower legs.