Lipedema and lymphedema are two very different and distinct medical conditions that can often be confused with one another. While both conditions can cause swelling in the legs, they have different causes and treatment approaches.
Lipedema or Lipoedema:
Lipedema, sometimes referred to as lipoedema, is a connective tissue disorder that affects somewhere between 11-19% of women worldwide. As lipedema is often misdiagnosed as obesity or lymphedema, women don’t often receive an official diagnosis so it’s hard to determine the exact percentage of women who have lipedema. While lipedema is primarily found in women, men can develop signs of lipedema. There are also other connective tissue and fat disorders, like dercums, that affects primality men.
Traditionally, lipedema was characterized by fat only in the legs, but as more research is being done, lipedema can be presented in the torso and arms as well. This abnormal fat is usually symmetrical, meaning both sides of the body will look the same. Most women with lipedema have abnormal accumulation of fat in the legs, hips, and buttocks, with their upper body being disproportionally smaller. Women often use the term “heaviness” to describe the feeling of their limbs.
Lipedema can also cause pain, tenderness, and easy bruising in the affected areas. For these women, putting on a pair of jeans or other restrictive clothing would be incredibly uncomfortable.
The exact cause of lipedema is unknown, but studies by Dr. Karen Herbst and others suggest there is a genetic marker that when combined with other generic markers could predispose a women to develop lipedema. Women with lipedema often have a family history of the condition, and it is believed to be related to hormonal changes, such as those that occur during puberty, pregnancy, or menopause. A throughly family history is one of the tools for a correct lipedema diagnosis.
Lymphedema, on the other hand, is a condition that results from damage to the lymphatic system, which is responsible for draining lymphatic fluid from the body. Lymphedema can occur in any part of the body, but it most commonly affects the arms or legs. When the fluid cannot drain on its own, the fluid begins to build up. The fluid back flow is often first noted as “dermal back flow” where there’s a puffiness to the skin. In easy stages, this swelling is intermittent and goes away with elevation. As the lymphatic system becomes more damaged, this swelling becomes more persistent and can become fibrotic, meaning the ares becomes hard.
If lymphedema was present at birth, even if the swelling was not noticeable until later in life, it is considered primary lymphedema. For primary lymphedema, there is often a vascular issue as well.
If the damage is the result of cancer treatments or trauma, it is considered secondary lymphedema. In the United States, breast cancer is the leading cause of lymphedema. There are several reasons for this. First, the removal of lymph nodes puts strain the the remaining nodes. If the remaining nodes are overwhelmed, fluid begins to back up. Second, there seems to be a correlation of radiation and lymphedema. Radiation destroys the lymphatic system. While the lymphatic system can regenerate, the scar tissue left by radiation makes it difficult for the lymphatic system to reconnect effectively.
Misdiagnosis or Undiagnosis:
Health professionals are severely undereducated in both lipedema and lymphedema. Being unaware of these conditions makes it difficult for them to diagnose lipedema and lymphedema. Most women with lipedema have done their own extensive research and present their research to their doctor. On average, women bring up lipedema as a possible diagnosis more than a dozen times before a medical professional considers lipedema.
Most doctors are not familiar with these conditions and may mistake them for other conditions, such as obesity or venous insufficiency. Lipedema is often misdiagnosed as lymphedema or obesity. Part of this is a blessing because insurance is better equipped to understand and cover lymphedema, especially cancer related lymphedema, than lipedema. This may change in the coming years with the passing of the Lymphedema Treatment Act, expected to go into effect January 1, 2024. The lipedema community believes that the Lymphedema Treatment Act will pave the way for more comprehensive coverage for the necessary compression garments and care.
Lymphedema is often missed in the early stages when swelling is intermittent. It can be dismissed as simple weight gain due to aging or lifestyle. When the swelling becomes persistent and/or hard, is when it’s more likely to be correctly diagnosed.
To avoid misdiagnosis or undiagnosis, it is important to seek out a healthcare provider who has experience in diagnosing and treating these conditions. A specialist such as a vascular surgeon a dermatologist can provide an accurate diagnosis. A Certified Lymphedema Therapist (CLT) can be an excellent resource in finding a doctor to diagnose as CLTs work with lipedema and lymphedema.
Lipedema and Lymphedema Treatment Approaches:
Both lipedema and lymphedema are progressive diseases that require lifelong management. Although there is no cure for either condition, there are treatments available that can help manage the symptoms and improve the quality of life. Early diagnosis can allow for management of symptoms before swelling begins affect gait and mobility.
Manual Lymphatic Drainage (MLD) and compression therapy are the two most common treatment approaches for both lipedema and lymphedema. MLD is a specialized manual therapy technique that helps stimulate the lymphatic system, improve lymphatic flow, and reduce swelling. Compression therapy involves wearing special compression garments or bandages that help compress the affected area, promoting lymphatic drainage and reducing swelling. Success of compression garments depends heavily on proper fitting and consistent use. A professional fitter, someone trained in compression garment fitting, is the best resource to make sure the correct compression is selected. Compression garments should be worn daily, washed after every use, and replaced every six months. Pneumatic compression devises can help with provide additional compression therapy. For both conditions, insurance often covers the majority of the cost for one pump every five years.
For lipedema, there are other manual therapies that help with fluid build up under the fascia. Dr. Karen Herbst suggests use of Myofascial Release (MFR) to move build from under the fascia to where the lymphatic system can drain the fluid. A CLT trained in MFR is a valuable addition to a lipedema care team. Many women with lipedema often undergo liposuction or lipectomy to remove abnormal fat. While this is not a cure for lipedema, it can help reduce pain and allow a woman to regain mobility. These procedures are different from cosmetic liposuction and should be performed by a surgeon familiar with lipedema.
For lymphedema, MLD and compression therapy are the cornerstone of treatment. Proper skin care, including using pH appropriate products, and exercise are important parts of lymphedema management. Monitoring limb size is an excellent way to determine if swelling is present. To do this at home, only a flexible tape measure is required. A change of 1-2 cm, or 3-5% limb volume, should be reported to primary care provider or oncology team. While this seems to be a small change, it can start the process of getting into a lymphedema clinic for treatment. Many clinics have a six month waiting period.
Advocating for Lipedema or Lymphedema Diagnosis:
As with any health condition, it’s important to advocate for care. If you believe you have either or both conditions, educate your providers and ask for them to evaluate you. Your local CLT will have resources and materials. If you need additional resources, here a few: