Myth 1: There is edema in lipedema

The Myth Explained

For many years, lipedema has been described — even by healthcare professionals — 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), or a type of lymphatic disease. This misconception has been reinforced by:

  • The use of now outdated or misleading terms such as “lipolymphoedema”

Online information and community resources that group lipedema with lymphatic conditions

  • Clinical symptoms like heaviness or pressure in the legs, which feel similar to fluid retention
  • Visible leg enlargement, which resembles oedema that arises from different causes.

 

Even past national or international guidelines have mistakenly described lipedema as “progressive” or “oedematous” without strong evidence.

As a result, many patients receive treatments aimed at managing fluid — such as manual lymphatic drainage or diuretics — that are either ineffective or inappropriate for lipedema. However, recent high-quality research and updated guidelines provide a more accurate understanding.

The Facts

1. Lipedema is a painful fat disorder — not a fluid disorder

According to the S2k German Guideline on Lipedema (2024), lipedema is defined as: “A painful, disproportionate, symmetrical distribution of adipose tissue on the extremities — most commonly the legs and sometimes the arms — occurring almost exclusively in women.” (S2k Guideline, 2024, Section 2.1) and “lipedema is neither an edema nor a disease manifestation with venous or lymphatic dysfunction.” (S2k Guideline, 2024, Section 4)

Experts agree that lipedema is not caused by venous or lymphatic dysfunction, as clinical exams have shown no relevant fluid retention in the legs of patients with lipedema. Instead, pain is the primary symptom, not swelling or water retention. 

2. Compression is used for pain relief — not fluid removal

Compression garments are commonly prescribed in lipedema treatment, but their purpose is not to treat oedema. Guidelines state clearly: “Compression therapy in lipedema shall be directed towards the reduction of pain and other subjective symptoms.” (S2k Guideline, 2024, Recommendation 4.3) It also adds: “Compression is not suitable for the reduction of adipose tissue.” (S2k Guideline, 2024, Recommendation 4.4)

Thus, compression serves to support painful tissues and reduce discomfort — not to shift or drain fluid, as it would in conditions like lymphoedema.

3. The sensation of swelling is real — but not caused by edema

Many individuals with lipedema report feelings of swelling, tightness, or heaviness in the legs, especially by the end of the day. These symptoms are real and should not be dismissed. However, they are caused by:

  • Painful and inflamed fat tissue
  • Localised pressure sensitivity
  • Sometimes, poor venous return or postural congestion — but not fluid retention in the lymphatic sense.

 

Unlike true edema, lipedema does not result in “pitting” when the skin is pressed.

4. Studies show that visible swelling is usually due to other factors

When fluid retention does occur, it is usually the result of other conditions — particularly obesity-related lymphoedema. A 2018 expert review by Bertsch and Erbacher explains: “Relevant oedema is only very rarely present in lipedema cases.” (Phlebologie 2018: Lipedema – Myths and Facts, Part 1)

Older studies that suggested lymphatic changes in lipedema lacked proper documentation of participants’ BMI. This raises the likelihood that the observed lymphatic findings were related to obesity, not lipedema itself.

5. Diuretics and manual lymph drainage are not routine treatment

The use of diuretics (water tablets) or manual lymphatic drainage (MLD) is not recommended for lipedema unless another diagnosis is present. According to the S2k guideline: “Diuretics shall not be used for the treatment of lipedema.” (S2k Guideline, 2024, Recommendation 6.1)

Manual lymph drainage is not indicated unless compression fails and oedema from other causes is suspected.” (S2k Guideline, 2024, Section 4.3)

6. Terms like “lipolymphoedema” are outdated and misleading

The term “lipolymphoedema” implies that lipedema naturally progresses into lymphoedema. This concept is not supported by any established diagnostic criteria. Bertsch and Erbacher recommend:

“The term lipolymphoedema should therefore be deleted from the vocabulary of lymphology.” (Phlebologie 2018: Lipedema – Myths and Facts, Part 1)

Such terminology leads to confusion and often results in inappropriate or excessive treatment.

Q&A for Patients

  1. I feel swollen — doesn’t that mean I have oedema?
    The sensation is real, but the cause is likely inflamed fat tissue, not fluid. Swelling in lipedema feels different and usually does not leave an indent when pressed.
  2. Should I get manual lymphatic drainage?
    Only if you’ve been diagnosed with a co-existing condition such as lymphoedema. For lipedema alone, it is not typically necessary or effective.
  3. Will water tablets help?
    No. Diuretics are not helpful in lipedema and are not recommended. Their use may even be harmful without a clear medical indication.

Futher Reading for Healthcare Professionals

International Consensus on Lipoedema/Guidelines

Letters to the Editor and responses from the Consensus group

Psychological aspects and quality of life in Lipoedema

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.