What is lipoedema? Symptoms, causes and treatment options

For many women it is a years-long, frustrating ordeal: despite strict diets and regular exercise, the legs simply refuse to get slimmer. Instead, they feel heavy, tense and painful at the slightest touch. From the outside, the hasty diagnosis is often "being overweight". Yet in many cases an unrecognised chronic condition is behind it: lipoedema.

In this article we explain in detail what exactly lipoedema is, which symptoms you can use to recognise it, which treatment options exist today, and we answer the most common questions surrounding the diagnosis.

What exactly is lipoedema?

Lipoedema is a chronic and progressive fat distribution disorder that affects almost exclusively women. It involves a pathological and uncontrolled increase in fatty tissue, usually on the legs (thighs, calves, hips), the buttocks and, more rarely, also on the arms.

Important to know: lipoedema has nothing to do with classic overweight (obesity) or a lack of discipline. While normal fat can be reduced through a calorie deficit and exercise, the diseased lipoedema fatty tissue is largely resistant to conventional diets and sport.

Typical symptoms: how do I recognise lipoedema?

The condition shows itself not only through a visual change, but above all through distressing physical complaints. The following symptoms are typical:

• Pressure and touch pain: The affected areas are extremely sensitive. Even light pressure, wearing tight clothing or stroking the skin can cause pain.
• Feeling of heaviness: The legs often feel as heavy as lead and exhausted, especially after long standing, sitting or on warm summer days.
• Tendency to bruise (haematomas): Even with light knocks, which one often no longer remembers, bruises quickly appear.
• Loss of proportion: There is a strong disproportion between an often very slim upper body and voluminous legs or arms.
• Symmetrical occurrence: Lipoedema always occurs on both legs or both arms. The hands and feet usually remain slim (the so-called "cuff phenomenon" or "collar formation" at the ankles).

Causes: why does lipoedema develop?

The exact causes have not yet been conclusively clarified medically. Experts agree, however, that two main factors play a decisive role:

1. Genetics: Lipoedema occurs more frequently within families. Often the mother, aunt or grandmother already suffer from similar complaints.
2. Hormones: Since almost exclusively women are affected and the acute flare-ups mostly occur during phases of strong hormonal changes (puberty, pregnancy, menopause or after stopping/changing the pill), research assumes a massive hormonal influence.

The 3 stages of lipoedema

The condition progresses chronically and, without treatment, usually worsens over time. Medically it is divided into three stages:

• Stage 1: The skin surface is still smooth, but the subcutaneous fatty tissue is already thickened. The fat structure feels soft, small nodules (similar to polystyrene beads) can be palpated.
• Stage 2: The skin surface becomes uneven, wavy and knotty (often referred to as "mattress skin"). The fat nodules become significantly larger (walnut to apple-sized).
• Stage 3: Severe hardening of the tissue occurs. Large, overhanging fat rolls (fat lobes) form, which rub against each other when walking, restrict mobility and can lead to severe skin inflammations.

What is there for lipoedema? The best treatment options

Even though lipoedema is not yet considered medically curable in the classic sense, it can be treated excellently. The goal of every therapy is to relieve the pain, stop the progression of the disease and noticeably regain quality of life. Three therapeutic approaches are fundamentally distinguished:

1. Complex decongestive therapy (CDT)

CDT is the gold standard of conservative treatment and consists of several essential building blocks:

• Manual lymphatic drainage (MLD): A gentle, special form of massage that helps to transport accumulated fluid out of the tissue and to relieve the tension pain.
• Compression therapy: The consistent wearing of custom-made, flat-knitted compression garments is essential. It prevents new fluid from being stored again immediately after the lymphatic drainage.
• Movement therapy: Sport in the water (such as aqua-cycling, aqua-jogging or swimming) is ideal, since the natural water pressure acts like an additional lymphatic drainage and protects the joints.
• Skin care: The skin is heavily stressed by swelling and compression garments and requires special care to prevent cracks and infections.

2. Surgical treatment: liposuction (fat removal)

If the conservative therapy (CDT) does not bring the desired success and the level of suffering remains too high, an operation can be the right way.

In lipoedema-appropriate liposuction the diseased fatty tissue is permanently removed surgically. This is done using a particularly tissue-sparing procedure (such as water-jet-assisted liposuction – WAL). For most patients this operation means a massive reduction in pain and a completely new feeling of life.

Important note: A liposuction in the case of lipoedema is a purely medical procedure and should be carried out exclusively by specialised medical specialists (e.g. specialists in plastic and aesthetic surgery with a focus on lipoedema).

3. Adapted nutrition and mindset

Even if diets do not make the actual lipoedema fat disappear, nutrition plays a supporting role. An anti-inflammatory diet (little refined sugar, avoiding white flour products, plenty of fresh vegetables, omega-3 fatty acids) can demonstrably help to reduce the pain in the tissue. In addition, a healthy diet prevents the development of additional excess weight, which would negatively trigger the lipoedema.

Frequently asked questions (FAQ) about lipoedema

Which doctor is responsible for the lipoedema diagnosis? The right contact for the diagnosis is a phlebologist (specialist for vein disorders) or a lymphologist. Specialised angiologists or dermatologists can also make the diagnosis. If there is a corresponding suspicion, family doctors usually refer to these specialist groups.

Does the health insurance pay for the treatment (liposuction) for lipoedema? The conservative therapy (lymphatic drainage and compression stockings) is usually covered by the statutory health insurers on medical prescription. The coverage of the surgical liposuction is tied to very strict guidelines in the DACH region. In Germany it is covered under certain conditions and for a limited time for patients in stage 3. In stages 1 and 2, an individual application or a battle before the medical service is usually necessary; very often this is a self-paid service here. Tip: Always enquire about the most current guidelines of your specific health insurer.

Can I get rid of the lipoedema through sport? No. The pathologically altered lipoedema fat cannot be reduced through classic sport and calorie burning. Nevertheless, sport is extremely important! Movement strengthens the muscle pump, stimulates the lymph flow, helps to break down healthy fat and improves overall psychological and physical condition. Water sports, cycling or brisk walking are particularly recommended.

Is there a special lipoedema diet? There is no "one" lipoedema diet. Many patients report, however, of massive pain relief through an anti-inflammatory diet or through the ketogenic/low-carb diet. It is important to avoid blood sugar fluctuations, to avoid heavily processed foods and to drink enough still water.

Is lipoedema curable? From a medical point of view, lipoedema is considered chronic and therefore not fully curable. Through the surgical removal of the diseased fat cells (liposuction), the symptoms and the visual appearance can, however, be reduced so significantly that many of those affected are subsequently completely pain-free and regain a normal quality of life.

Conclusion: you are not alone!

The lipoedema diagnosis is at first a shock for many women, but shortly afterwards it often brings great relief: at last there is a medical name for the years of pain and the constant, blameless failure of diets. It is important, if lipoedema is suspected, to consult a specialist early on. With the right combination of decongestive therapy, targeted nutrition and, if necessary, a surgical intervention, affected women can today lead an almost pain-free, self-determined and active life.