Dispelling 8 Myths about Lipedema
Living with lipedema can be confusing, frustrating, and at times overwhelming. Too often, women searching for answers are met with misinformation — repeated misconceptions based on outdated science, and contradictory advice, sometimes leading to costly and ineffective treatment.
The International Lipedema Association (ILA) has launched the awareness campaign “Dispelling 8 Myths About Lipedema” to provide clarity.
This campaign has two goals:
- To give patients clarity — by addressing the most common misconceptions about lipedema with evidence-based facts.
- To build confidence and hope — by helping women through accurate understanding and compassionate support to adopt sustainable habits and pursue effective treatments to reduce pain and improve wellbeing.
Whether you are a patient or a healthcare professional, we invite you to use this campaign as an opportunity to educate yourself, and to raise awareness — so that women with lipedema receive the recognition and care they deserve.
Myth: There is edema in lipedema
For many years, lipedema has been described as a condition involving fluid build-up or swelling in the legs. This has led to the widespread belief that lipedema is a form of edema (fluid retention).
Truth: Lipedema is not an edema or lymphatic disorder.
Truth: Lipedema is not an edema or lymphatic disorder.
Myth: Lipedema causes easy bruising
Older definitions included easy bruising as a symptom, but recent research tells a different story. Many women with lipedema do not bruise easily, and many people who do bruise easily do not have lipedema.
Truth: If you have easy bruising, it is most likely not caused by lipedema.
Truth: If you have easy bruising, it is most likely not caused by lipedema.
Myth: Lipedema is a lymphatic disorder
One of the most persistent misunderstandings about lipedema is the belief that it is a disease of the lymphatic system. But current evidence clearly distinguishes lipedema from true lymphatic disorders.
Truth: Lipedema is not a disorder of the lymphatic system.
Truth: Lipedema is not a disorder of the lymphatic system.
Myth: Lipedema is a progressive disease
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.
Truth: Lipedema is not inherently progressive — disease progression depends on other factors.
Truth: Lipedema is not inherently progressive — disease progression depends on other factors.
Myth: Lipedema is a common disease
Lipedema is often described as a “common” condition, with estimates claiming that up to 10–15% of women are affected, but actually, the true prevalence of lipedema is unknown — and certainly not as high as often claimed.
Truth: The true prevalence of lipedema is unknown.
Truth: The true prevalence of lipedema is unknown.
Myth: Lipedema occurs on the abdomen
It is sometimes wrongly claimed that lipedema can spread to include the abdomen. And because many patients with lipedema also struggle with abdominal weight gain, the assumption feels convincing.
Truth: Lipedema occurs exclusively in the extremities—not the trunk, head, or neck.
Truth: Lipedema occurs exclusively in the extremities—not the trunk, head, or neck.
Myth: Lipedema causes weight gain
The frequent co-occurrence of lipedema and obesity reinforces the myth that lipedema causes weight gain.
But reality is that lipedema itself does not cause weight gain.
Truth: Lipedema does not cause weight gain - weight gain is dependent on many factors.
But reality is that lipedema itself does not cause weight gain.
Truth: Lipedema does not cause weight gain - weight gain is dependent on many factors.
Myth: Weight loss has no impact on lipedema
Patients are often told that weight loss has no effect on lipedema. Understandably, this leads to frustration and the belief that lifestyle changes are irrelevant. But this is not the full picture.
Truth: Weight loss cannot cure lipedema, but it can reduce symptoms and improve quality of life.
Truth: Weight loss cannot cure lipedema, but it can reduce symptoms and improve quality of life.
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.