Diagnosing Lipedema

Lipedema requires a clinical diagnosis, meaning that there is no standardized test such as bloodwork or imaging that can confirm the presence of Lipedema. 
Currently, a trained clinician reaches the diagnosis by considering the patient history in the context of a physical exam. How to find a Lipedema specialist.

Patient History and Physical Exam

Learn more about the patient history and interview and physical exam in these two videos.

During the physical exam, the clinician may use their hands to feel for an atypical texture in affected areas. Lipedema tissue may have small dense nodules, ranging from a few millimeters to a few centimeters. These nodules are typically spheroidal, but clusters may give the sense of oblong or rod-like shapes. These features can be very diverse between patients in size, texture, and depth within the tissue. This can make these hallmarks of Lipedema difficult to feel, especially if swelling is present. Texture of the skin has been reported to have a soft, translucent appearance.

Treatment Plan May Vary Due to Several Factors

A Lipedema diagnosis and treatment plan may vary depending on the clinician and the country in which the patient is being seen. Several attempts have been made to build on the original descriptions of Lipedema that were first described in the 1940s. To date, six international guidelines and consensus statements with three other commonly cited clinical papers guide the identification of Lipedema in most clinical encounters. These include:

• Allen and Hines

• Wold

• Buck and Herbst

• S1 Guidelines

• First Dutch Guidelines

• UK Best Practice Guidelines

• Spanish Consensus Document

• JWC International Consensus Document

• USA Standard of Care

See our downloadable summary of clinical criteria and the related blog for links to the articles. 

A curated list of other patient and health care professional resources is available through our website.

Diagnosing Lipedema in the Future

Although a Lipedema diagnosis requires the expertise of a skilled professional, this may be supported in the future by research that is currently leveraging our growing understanding of Lipedema biology to create tools that will help health care providers differentiate Lipedema from other similar conditions.

The Lipedema Foundation is actively working with patients and researchers to shorten the time to diagnosis and increased the certainty of any Lipedema diagnosis. Our research initiatives cross many technologies, and have highlighted specific areas where even simple advancements could pay enormous benefit to patients and the research that supports them. These include:

Genetics: Though there does not seem to be any single gene that causes Lipedema, it does tend to “run in families.”  Current research is examining groups of genes that may work together to influence the risk of Lipedema. 

Soft tissue imaging: Common imaging platforms such as MRI, Ultrasound, DEXA, and CT scans are being used to measure characteristic differences in Lipedema between tissue thickness, or ratios of elements like fat to muscle. Specialty MRI systems are currently being used to measure levels of tissue sodium. Other specialty systems like NIRFLI and lymphoscintigraphy are showing promise in their ability to map the structure and highlight function of lymphatic networks in Lipedema.  

Surface imaging: Mapping the contours of the surface of the body may offer an ability to differentiate between conditions like lymphedema, obesity, and Lipedema. 3D scanning technologies are commonly used in some clinics, and may improve with increased access to Lipedema patients. Airport scanners (also known as millimeter wave imaging) have been singled out by patients as a commonly encountered  technology that may “notice” Lipedema patients more than the general public.

Changes in biophysics of tissue: Lipedema may change the elasticity of tissue or alter their natural electrical conductance that can be observable through techniques like bioimpedance. Although easy bruising is often reported as a symptom of Lipedema, biophysical tests to measure the fragility of capillaries remain to be tested with the condition.

Funding Research to Aid Diagnosis

The Lipedema Foundation is actively funding research to develop tools to aid diagnosis. These technologies range from imaging and clinical laboratory tests that might one day be used to directly diagnosis a patient, to genetic approaches that might help understand a person’s risk for developing Lipedema. 

With this cutting edge research, we are working with patients and researchers to shorten the time and increase the certainty behind any Lipedema diagnosis.