"Post legs": what you need to know about lipedema, a disease that is still too little known

Recognized by the World Health Organization (WHO) since 2018, lipoedema affects nearly 11% of women in France, but remains largely underdiagnosed and poorly managed.

Dr. Pascal Giordana, vascular physician at the Nice University Hospital and member of the French Society of Vascular Medicine (SFMV), provides insight into this little-known disease, its complex mechanisms and the therapeutic solutions available.

What is lipedema?

It is a chronic disease characterized by an abnormal, symmetrical, and often painful accumulation of fat under the skin, mainly on the legs—sometimes the arms—which does not disappear with physical exercise or diet. This accumulation causes disproportionate swelling of the limbs, accompanied by feelings of heaviness, pain to the touch or spontaneous, as well as frequent bruising, even from the slightest shock. Over time, the legs widen, the skin becomes irregular, hence the nickname "post leg disease."

How does the disease progress?

It progresses in stages: at first, the skin remains smooth but the tissues thicken; then nodules appear, making the skin bumpy, with a "mattress" appearance. At an advanced stage, the fatty deposits become very visible, hinder walking, and extend to the ankles or arms.

What are the causes?

They are not fully understood, but lipedema appears to be linked to a combination of hormonal and genetic factors. Symptoms often appear or worsen during periods of hormonal upheaval, such as puberty, pregnancy, or menopause. The influence of estrogen on fat cells may partly explain the onset of the disorder, as well as the difficulty in losing fat in these areas despite a strict lifestyle.

What distinguishes this disorder from overweight or obesity?

Unlike overweight, where fat is distributed diffusely throughout the body, lipedema causes a localized and symmetrical accumulation of fat on the legs, hips, and sometimes the arms, while the upper body generally remains thin. This disproportion is characteristic and one can thus be thin while suffering from lipedema. Another fundamental criterion distinguishes this disease: the feet, as well as the hands and trunk, are never affected, unlike lymphedema (1) or other edemas where these extremities can swell. This anatomical particularity is decisive for making an accurate diagnosis and differentiating lipedema from other pathologies.

What impact on daily life?

Lipedema is a double whammy: constant chronic pain and profound psychological impact. Faced with often ineffective diets, many patients experience great frustration, a loss of self-confidence, and even eating disorders. Some no longer dare to show their legs or avoid social interactions. Depending on the severity of the disease, walking can become difficult. Added to this are difficulties getting dressed and frequent sprains, often linked to joint hyperlaxia, excessive joint flexibility present in a significant proportion of patients. These signs underline that lipoedema is much more than a simple cosmetic problem.

How is the diagnosis made?

It is primarily clinical: it is based on a careful examination of characteristic signs, such as symmetrical distribution of fat, sensitivity to touch, or the absence of swelling in the feet. In some cases, this diagnosis can be supplemented by an ultrasound, which allows the thickness of the fatty tissue under the skin to be measured and nodules to be identified.

How is lipedema treated today in France?

There is no cure for lipedema yet, but so-called "conservative" treatment can relieve symptoms and slow its progression. It involves wearing medical compression garments (leggings, tights), combined with lymphatic drainage, pressure therapy, regular appropriate physical activity (such as walking or swimming), and a balanced diet. In advanced forms, liposuction or microliposuction—a technique using very fine cannulas—may be considered to reduce volume and improve comfort. However, these procedures, which are not reimbursed, are expensive, and must be performed by experienced surgeons. However, results are not guaranteed, and certain conditions must be met beforehand, such as weight loss or prior treatment of varicose veins.

In France, the care pathway therefore remains very difficult...

Yes, in the absence of official recognition by the Health Insurance, care is not reimbursed and the entire cost falls on the patients. Some, lacking the means, turn to foreign countries – particularly Turkey – to benefit from liposuction at a lower cost, but with significant medical risks. Unlike countries like Germany or Spain, France is significantly behind in the treatment pathway for lipedema, leaving many women in a long medical limbo (2).

1. Lymphedema is defined as long-lasting swelling of an arm or leg caused by a buildup of lymph in the tissues, most often after cancer, surgery, or trauma.

2. In 2022, Claire Fourneaux, originally from Cannes, wrote the book Once Upon a Time My Lipoedema: Understanding and Living Better with Post Leg Disease (Mango Editions) in which she recounts with self-mockery her journey and her medical wanderings.