Lipedema: Myth or Fact

Lipedema is a condition that mainly affects women. It’s often underdiagnosed and confused for other disorders or obesity by the healthcare and general communities despite affecting approximately 10% of women. As awareness grows of this condition, various myths continue to be perpetuated. The mixed education and information can make progress toward optimal treatment and access to the correct diagnosis and care more challenging. Here are some common statements about lipedema and what you need to know.

Myth #1: Lipedema is caused by being overweight

Lipedema is commonly confused and assumed to be caused by an individual being overweight or obese. Although many individuals with lipedema may be overweight, it is not necessarily the cause. Someone can have lipedema and have a healthy and lower weight and body mass index (BMI), showing that lipedema isn’t caused simply by being overweight. The exact cause of lipedema is still unexplained, but researchers have found a few possible reasons.

First, 60% of those with lipedema can identify an immediate family member with the condition. This suggests that there may be a genetic component to the condition. Lipedema is typically first seen around a hormonal change, such as puberty, pregnancy, or menopause. Due to this, there is also the thought that a shift in estrogen plays a role in the onset of lipedema and an increase in the number of fatty cells in the body.

Researchers continue to look at the lymphatic system as well, as they find consistent issues and dysfunction with the lymphatic and blood capillaries in the body. When these vessels are not working correctly, fluid can get congested and backed up, leading to swelling in some body regions. This factor is also a possible reason for what causes lipedema.

Myth #2: Diet, exercise, and losing weight will get rid of lipedema

Lipedema is caused by an increase in fat deposits under the skin that fills with fluid and also has the potential to harden. Although we just explained that lipedema isn’t simply caused by obesity, weight management can positively impact lipedema symptoms. Diet and exercise can improve lipedema and help prevent significant progression of the condition.

Exercise will not only assist in weight management, but it is a great way to stimulate the lymphatic system to assist with moving fluid and edema in the body that may be congested. Light walking and resistance training will allow muscles to activate and encourage fluid movements. However, lipedema may be a painful condition for some, making it more uncomfortable to participate in weight-bearing activities that strain the joints. Another popular option for those with lipedema is swimming or pool exercises. The water will take away the pressure on joints, but it also creates a natural compression on the body, which can also help encourage fluid movement while exercising.

Eating and maintaining a healthy diet can also assist with weight management and overall health with lipedema. Currently, the diet most recommended by specialists includes an anti-inflammatory diet low in sugar, alcohol, and other unhealthy foods. Although lipedema is known to be more resistant to weight loss, a combination of a healthy diet and exercise may be helpful.

Weight loss alone will likely not get rid of lipedema, but it may help with symptoms of pain and swelling and improve the ability to move around. Lipedema is a condition that must be managed with a healthy lifestyle and other treatment options.

Myth #3: Lipedema is a problem with edema

Lipedema may also be confused with lymphedema. Lymphedema is an excess of lymphatic fluid in an area of the body. This fluid typically sits in the space around the tissues. The difference with lipedema is that it involves fat or adipose tissue, and fluid fills the inside of the fatty tissue. A lipedema component is due to a problem with edema and swelling, but it can be a bit more complex to manage and treat.

When diagnosed with lymphedema or a vein issue, which may cause swelling, imaging, and testing may be done with special tests like lymphography or lymphoscintigraphy. However, these imaging procedures and tests will not reveal or assist in diagnosing lipedema.

For treatment, lymphedema and other edema conditions respond well to compression bandaging and compression garments. Lipedema does not reduce in swelling or size with compression due to the involvement of fatty tissue.

Myth #4: Lipedema only impacts the legs and thighs

Lipedema is known to affect the legs and the thighs, but it can also be found in other areas of the body. The arms may be involved 30% of the time, and it’s most commonly found in the upper arms and chest compared to the lower arms. Lipedema can also be found in the abdomen and pelvis or hip region. The hands and feet are often spared, without any signs of lipedema seen or present.

Lipedema is bilateral, which means it shows up on both sides of the body equally. There are various stages of lipedema, including:

1st Stage – minimal skin changes or signs of swelling, but some changes to body shape and disproportion

Stage 2 – skin begins to show changes along with signs of swelling and possible lipomas or fatty deposits

3rd Stage – tissue begins to harden, and there is an increase in changes to the body shape with fatty tissue accumulation and swelling

Stage 4 – the tissue is significantly hard, and most of the body is affected.

Myth #5: There are no treatment options for Lipedema

Lipedema can be challenging to treat, and most individuals need to utilize a variety of treatments to manage it. There are both conservative treatment and surgical treatment options.

For conservative treatment, complete decongestive therapy (CDT) is done, which may include manual lymphatic drainage (MLD), compression garments, exercise, and the use of pneumatic compression devices. AIROS Medical’s compression therapy products are user-friendly and provide sequential gradient compression to mimic manual lymphatic drainage. You can learn more about AIROS Medical products HERE.

If CDT is unsuccessful or lipedema has progressed to later stages and becomes more challenging to treat, surgical treatment may be necessary. Often, individuals must try conservative therapy for six or more months before being eligible for surgery. One surgery option for lipedema is a form of liposuction where the excess fatty deposits and tissue is removed. Then management is followed with conservative treatment, such as compression garments, for long-term results.

Others

There is still a lot to learn about lipedema, and there continues to be a high need for optimal treatment options to reduce and manage this condition. Every individual is different and will have his, her, or their own needs. For more information on diagnosing lipedema or treatment options, it’s best to speak to your doctor or medical team.

References:

Kruppa P, Georgiou I, Biermann N, Prantl L, Klein-Weigel P, Ghods M. Lipedema-Pathogenesis, Diagnosis, and Treatment Options. Dtsch Arztebl Int. 2020 Jun 1;117(22-23):396-403. doi: 10.3238/arztebl.2020.0396. PMID: 32762835; PMCID: PMC7465366.

Forner-Cordero I, Szolnoky G, Forner-Cordero A, Kemeny L. Lipedema: an overview of its clinical manifestations, diagnosis and treatment of the disproportional fatty deposition syndrome—systematic review. Clin Obes. 2012;2:86–95.

Szel E, Kemeny L, Groma G, Szolnoky G. Pathophysiological dilemmas of lipedema. Med Hypotheses. 2014;83:599–606.

Baumgartner A, Hueppe M, Schmeller W. Long-term benefit of liposuction in patients with lipoedema: a follow-up study after an average of 4 and 8 years. Br J Dermatol. 2016;174:1061–1067.