Myth: Lipedema is a progressive disease
The Myth Explained
For decades, lipedema has been referred to as a “progressive disease,” implying that symptoms will inevitably worsen over time. This idea has been repeated in older literature, informal resources, and even by some health professionals. Patients are often told they will experience:
- Constant enlargement of the legs
- Increasing pain and loss of mobility
- A natural evolution into lymphoedema
This framing leads to fear, passivity, and resignation — a belief that worsening is unavoidable and that no amount of self-management will make a difference. But new research and updated guidelines challenge this outdated narrative.
The Facts
1. Lipedema can be stable as long as the weight is stable
The S2k Guideline on lipedema (2024) states clearly:
“Lipedema shall not be perceived as a generally progressive disease, given that progression is dependent on various factors.”
(S2k Guideline, 2024, Recommendation 2.10)
This marks a critical shift from earlier views. While some individuals may see worsening of symptoms over time, this is not inevitable and is not driven by the disease alone.
2. Long-term studies support this view
In a recent five-year cohort study, Forner-Cordero et al. (2025) followed women diagnosed with lipedema and found that:
“Progression was related to abdominal fat increase, evaluated as waist-to-height ratio (WHtR). When the patient gained abdominal fat, the volume of their lower limb also increased.” (Forner-Cordero I, Muñoz-Langa J. Is lipedema a progressive disease? Vascular Medicine, 2025)
The authors conclude that what is often interpreted as disease progression is actually the result of changes in overall fat distribution, especially visceral fat. Lipedema may be stable for years in individuals who maintain a healthy lifestyle and body composition.
3. “Stages” of lipedema make no sense
Lipedema is sometimes divided into “stages” (I to III) based on changes in skin surface, limb volume, and fat structure. However, these stages:
- Are not linked to disease duration
- Are not supported by a consistent scientific basis
There are women with lipedema who have slim legs but experience severe pain, and women with large legs who report only mild symptoms. The volume of the lipedema fat does not correlate with the level of the experienced pain.
4. Stabilisation can be influenced
Both the S2k guideline and the Forner-Cordero study agree: individuals can influence the course of their symptoms through supportive interventions, including:
- Regular physical activity
- Maintaining a healthy waist-to-height ratio (WHtR < 0.5)
- Appropriate use of compression for pain management
- Avoidance of unnecessary weight gain
This means that patients have a lot of agency— and early, informed care can help prevent symptom escalation.
Q&A for Patients
Is lipedema going to get worse over time?
Not necessarily. Many people live for years with stable symptoms. Worsening, when it happens, is usually linked to factors like weight gain, not the disease itself.Why do I hear about “stages” of lipedema?
Stages are used to describe tissue changes, but they don’t reflect disease activity or predict future problems. They’re not a progression map.Can lifestyle changes really make a difference?
Yes. Evidence shows that keeping your waist-to-height ratio below 0.5 helps stabilise lower limb symptoms. Regular movement, joint-friendly exercise, and healthy habits matter.
If you’ve been told that lipedema will inevitably worsen, or if you fear losing control of your body, you deserve to know this: Lipedema is not a life sentence of deterioration.
Lipedema is not inherently progressive. How it develops depends on many factors, which means you are not destined to become less mobile or more limited over time. With access to the right information and support, many women are able to:
- Reduce pain
- Maintain function
- And live active, meaningful lives
Talk to a healthcare professional who understands the difference between myth and evidence. There is power in prevention — and it starts with clarity.
Futher Reading for Healthcare Professionals
From the ILA Co-Presidents
“As ILA, we stand for providing evidence-based information to support healthcare professionals and women with lipedema in achieving the best possible diagnosis and treatment. We are committed to dispelling misinformation, and we encourage open dialogue that reflects diverse perspectives to move science forward.”
– Ad Hendrickx and Gabriele Erbacher, ILA Co-Presidents, September, 2025.