Understanding Lipedema: Insights from the International Lymphedema Framework
The International Lymphedema Framework (ILF) and International Lipedema Association (ILA) have been instrumental in advancing the understanding and management of Lipedema—a chronic, painful, and often misunderstood adipose tissue disorder. During Session 1 of the ILF conference, experts including Gabriela Erbacher, Tobias Bertsch (Foeldi Klinik), Gunter Klose, and Melanie Thomas (Lymphoedema Wales) shared updated findings that challenge long-held misconceptions and clarify standards of care.
A New Consensus on Lipedema
The publication of an international consensus document on Lipedema—though controversial—was a critical step in developing a standard of care across Europe, where lipedema surgery is now recognized as a medically necessary procedure.
Through extensive research led by the International Lipedema Association (ILA) (theila.net), one of the key findings was that no lymphatic insufficiency is found in patients with Lipedema, reshaping our understanding of the condition’s pathophysiology.
Debunking Common Misconceptions About Lipedema
Misconception #1: Lipedema is an edema disorder
Unlike lymphedema—where ultrasound imaging reveals fluid accumulation—ultrasound studies in lipedema show no evidence of excess interstitial fluid. This distinction is critical in differentiating the two disorders.
Misconception #2: Lipedema is a lymphatic disease
Imaging and clinical studies demonstrate that women with lipedema have normal lymphatic morphology, showing no significant differences from control groups.
Furthermore, there are no characteristic signs of venous or lymphatic dysfunction in lipedema, reaffirming that it is primarily an adipose tissue disorder.
Misconception #3: Lipedema is progressive
While many believe lipedema inevitably worsens over time, data show that 10% of patients actually improve. In most cases, it is obesity—not lipedema itself—that is progressive.
Misconception #4: Lipedema causes weight gain
Although lipedema often coexists with obesity, 85% of patients are also obese, and 50% are severely obese. This suggests that obesity is typically in the foreground, not a direct consequence of lipedema.
Misconception #5: Lipedema can occur anywhere in the body
Lipedema presents in characteristic patterns, typically affecting the legs and arms, and not regions such as the abdomen. This anatomical specificity aids in accurate diagnosis.
The Role of the Certified Lymphedema Therapist (CLT)
Gunter Klose, CLT, presented several case studies illustrating individualized approaches to lipedema management.
Patient 1:
Patient 2:
Female, 32 years, BMI 27 – Mild disproportion, pain (4/10), and emotional distress (8/10).
Plan of care: Education about lipedema, anti-inflammatory nutrition, physical activity, and compression therapy to reduce inflammation, increase oxygenation, and relieve pain.
Patient 3:
Female, 48 years, BMI 63 – Lipedema with pitting edema (lipolymphedema).
Plan of care: Combination of approaches addressing both obesity and lymphedema.
Compression Therapy vs. MLD
Compression remains essential for tissue health and inflammation control.
Manual Lymphatic Drainage (MLD) is not indicated for pure lipedema, though it can reduce stress and pain. Future research may explore whether MLD can improve inflammation similarly to compression through histological mechanisms.
Lipedema as “Lipalgia Syndrome”
Melanie Thomas (Lymphoedema Cymru) proposed reframing lipedema as “Lipalgia Syndrome”,emphasizing pain as the central feature rather than edema.
Her findings included:
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Sensory symptoms such as tingling, fizzing, and pins-and-needles are more common in lipedema, while lymphedema patients report heaviness and dragging sensations.
This reclassification helps reduce diagnostic confusion and promotes a more accurateunderstanding of the condition as a neurological and adipose tissue syndrome, not simply a fluid disorder.
Liposuction: Evidence and Myths
Dr. Axel Baumgartner (Hanse-Klinik) addressed myths surrounding liposuction for lipedema, detailing several surgical modalities:
Procedures are commonly performed under tumescent local anesthesia (TLA), often while the patient is awake. Other surgeons may opt for full anasthesia.
Key Takeaways:
Conclusion
The ILF and ILA’s research efforts are transforming the global understanding of lipedema—from redefining its pathophysiology to clarifying effective treatments. The condition is increasingly recognized as a pain-driven adipose tissue disorder rather than an edema or lymphatic disease.
Multidisciplinary management, patient education, compression therapy, and individualized care remain cornerstones of effective treatment, while liposuction offers durable functional and symptomatic relief for many.
Written by:
Jenna LaFleche
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