Understanding Lipedema 

Walking down the streets or in malls, you’ve probably seen someone with rather “saggy-looking” skin usually at their lower limbs or even know someone who has it. Have you ever wondered what condition is called or what causes it? If it looks like any of the pictures shown below, it is most likely to be lipedema.


Image credit: Medium 

What is Lipedema?

Lipedema is a chronic condition that results in the accumulation of fat which would eventually result in a disproportionate fat distribution if not properly managed. It is characterized by a symmetrical swelling either in the legs, thighs, buttocks or sometimes in the arms. One notable fact about lipedema is that it is almost seen exclusively among women, with only a few rare cases seen affecting men. 

Unfortunately for some, lipedema may cause a toll in someone’s daily life, affecting aspects from their mental health to their physical health.

Stages of Lipedema

Because lipedema is a condition that may develop over time, your doctor/dermatologists may classify the disease in different stages depending on its development. Generally, there are 4 stages of lipedema, let us find out :

Image credit: American Journal of Case Reports

Stage 1: Patient’s skin may appear to be normal and is smooth to touch. However, skin will have nodules of enlarged fat present underneath the skin which can be felt by a dermatologist during an examination. Someone with stage 1 lipedema may experience some pain and easy bruising upon injury.
Stage 2: Patient’s skin often looks uneven and the skin may become dimpled, have indentations and develop what looks like a mattress-like pattern. The amount of fat is also higher in stage 2 compared with stage 1.
Stage 3: Here, patients may develop large extensions of skin and fat. These visible, large folds of skin and fat can be seen protruding the limbs (due to inflammation and thickening of tissues in the limbs) which as a result can cause the legs to look columnar. Subsequently, this causes a loss of elasticity and eventually a reduced blood and lymph flow out of the fatty tissue, stimulating it to grow even more. As such, patients' mobility and balance may be affected since these protrusions of fat can exert pressure on the patients’ joints.
Stage 4: This stage is when lipedema and lymphedema are both present in the body. Lymphedema is described as the buildup of fluid in the body’s tissues from a damaged lymphatic system and it often develops when lipedema causes the buildup of fat cells until it interferes with the patient’s lymphatic system. Unlike those with lipedema, people with lymphoedema will notice that their feet or hands are also affected and/or the degree of swelling is not the same; usually one limb is more swollen than the other.

Types of Lipedema: 

Type I: Fat is between the navel and the hips. It often covers the pelvis and buttocks.
Type II: Fat begins at the pelvis and continues down to the knees.
Type III: Fat begins at the pelvis and continues down to the ankles.
Type IV: Fat spreads from the shoulders down to the wrists.
Type V: Fat is predominantly on the calves.

Image credit: shutterstock 

Though rare, it is reported that some may have a combination of types, more oftenly Type II and IV or Type III and IV combined.

How Does Lipedema Happen?

The causes of lipedema remain unknown but it is widely attributed to genetic causes and/or hormonal changes. It usually begins or worsens when there’s a family member who has it or when there’s changes in your hormonal levels such as during: 

• Puberty

• Pregnancy 
• Menopause
• If you’re taking any hormonal contraceptive pills

While the condition may seem more apparent (more than half) in patients who are of heavier weight, lipedema doesn’t only affect overweight/obese patients and can still affect women who are at a healthy weight. Hence, it is important to note that lipedema DOES NOT equate to obesity neither does obesity have a direct association with lipedema.

Symptoms of Lipedema

If you or someone you know is affected with lipedema, you will probably experience either one of these:

• symmetrically (both sides are equally affected) swollen legs and arms where your feet and hands are often NOT affected
• pain, discomfort, heaviness or tenderness at affected areas
• have dimpled legs or “orange-peel” texture legs where fat may seen bulging at the knees
• experience difficulty in walking due to changes in your leg shape or heavier legs from fat accumulation
• swelling that may worsen in the afternoon, evening, after an activity or in hot weather
• easily bruised and/or sensitive to touch in the affected areas 

People with lipedema may subsequently also face restrictions in mobility since most of them may find it difficult to walk or participate in physical activities, exercise and other aspects of everyday life. This would then lead them to develop low self-esteem and other mental problems such as depression, anxiety, embarrassment and insecurities. Besides, because they have a small upper body and a larger lower body, options for clothes that fit right or look good are also limited.

Lipedema vs Lymphedema

Lipedema can be confused with another condition named lymphedema (accumulation of fluid due to damaged or blocked lymphatic system). Both are different conditions but lipedema can lead to lymphedema in the advanced stage. Most of the time the swelling in lymphedema occurs only on one side of the body and can affect the hands and feet while lipedema happens symmetrically, sparing the hands and feets.

Can Lipedema Be Treated?

There are yet to have any established treatment plan for lipedema but research is still actively exploring other potential options. The main goal of current treatments focus on reducing symptoms and improving patients quality of life, they are: 

• Active changes to the composition of your diet. Although fatty buildup that leads to lipedema may not respond well to calorie restriction or dieting, dietary changes may still help reduce the amount of fat that is not a result of lipedema since it is still possible to be overweight or obese in addition to having lipedema.  As lipedema often causes inflammation, an anti-inflammatory diet may be particularly beneficial; these include:
  (i) Low carbs diets
  (ii) Vegetarian diets
  (iii) Mediterranean diets

• Incorporating a physically active lifestyle. Since walking may be a real challenge for some, low impact exercises such as swimming or water aerobics are still manageable to increase your mobility and enhance blood circulation. As a result, pain and inflammation may also be reduced. If possible, gentle yoga can also be practiced as it may help build muscle strength and improve flexibility. At the same time, it may also help you relax and improve your mood.

• Massages are also known to improve mobility in lipedema as it moves the fluids from the affected area to be equally distributed to the other parts of the body.

• Compression. The use of stretchy bandages or tight forms of clothing may increase tissue pressure in the swollen legs and reduce the risk of more fluid buildup in the limbs.

• Liposuction. Liposuction is an invasive surgical procedure that removes the lipedema fat from the affected areas. It involves placing a tube beneath the skin and suctioning the fat away. Liposuction appears to be highly effective when all other conservative treatment fails to respond. Several sessions may be needed depending on the amount of abnormal fat present.

Image credit: dw.com

All in All

Lipedema is a chronic disease that causes a disproportionate fat buildup beneath the skin, most commonly affecting the lower limbs. While it may not seem like a serious health threat, poor quality of life often entails. In Malaysia, lipedema is still misdiagnosed, mistreated and misunderstood which can bring an even more negative impact to the patients’ mental health. Thus, by understanding lipedema and spreading the knowledge on this condition, we hope that we can debunk all stigmatization around lipedema and make patients with lipedema feel loved and belonged. 

This article is written by Janelle Leong, Bpharm(Hons) (DOC2US),
reviewed by Dr. Lee Siew Ling, MD (DOC2US)

References: 

1. https://www.medicalnewstoday.com/articles/lipedema-stages#stages
2. https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/Lipoedema#symptoms-of-lipoedema 
3. https://www.nhs.uk/conditions/lipoedema/#:~:text=Treatments%20for%20lipoedema&text=The%20main%20treatments%20are%3A,easier%20for%20you%20to%20walk 
4. https://www.healthline.com/health/lipedema-treatment 
5. https://www.webmd.com/women/guide/lipedema-symptoms-treatment-causes 

Written by

Janelle Leong, Bpharm(Hons)