Lipoedema mainly affects women whose quality of life is severely impaired as a result. There is little information about the causes and frequency of lipedema. Misdiagnosis is common and lipedema cannot be cured.

Overview: What is lipedema?

Lipoedema is a chronic disease that occurs predominantly in women. Lipedema is the symmetrical storage of fatty tissue and water in the subcutaneous tissue of both legs. Lipedema typically hurts when you press, which is not the case with obesity. The buttocks can also be affected and, more rarely, both arms are also affected. However, lipedema never develops on the chest and abdomen. Feet and hands are also spared. This creates an obvious discrepancy in the proportions between the lower and upper body.

The frequency of lipoedema is unclear

Lipoedema usually begins during a phase of hormonal changes such as puberty, pregnancy or the menopause. The frequency of lipoedema is not exactly known. This is probably because lipedema is very often confused with obesity or lymphedema. The legs are affected in 70 percent and the arms in 30 percent of sufferers. Men rarely suffer from lipedema, but when they do, it usually occurs in middle age.

Causes and risk factors: Is it in the genes?

The cause is still unknown. The exact pathomechanisms (causal chain of bodily processes that in their entirety lead to a disease) and the role of hormones are also unclear. Up to 60 percent of affected women have relatives with the same problem, suggesting that the condition may be hereditary. A specific gene that causes lipedema has not yet been discovered.

The fatty tissue in lipedema contains more fat cells than normal. They are held together by connective tissue. In addition, the very fine, small blood vessels under the skin become diseased, the permeability no longer functions properly, more water enters the fatty tissue and accumulates there. The accumulation of water between the firmly connected fat cells causes a feeling of pressure and tension, as well as pain.

Symptoms: Painful fat deposits

The changes in lipedema always occur symmetrically on the legs and/or arms. The increase in fat can be distributed homogeneously over the upper and/or lower leg (columnar leg) or upper and/or lower arm.

Lipoedema causes feelings of pressure, heaviness, heat and tension and in severe cases lipoedema is painful even without pressure. The symptoms are often worse in warm temperatures, when standing or sitting for long periods and especially in the evening. Lipoedema is very sensitive to bumps, so bruising occurs very quickly. This is due to the change in the permeability of the smallest blood vessels in the affected regions.

Lipoedema: three stages – based on the skin changes

Medical professionals divide lipoedema into different stages based on the condition of the skin.

  • Stage 1: The fat distribution in the subcutaneous tissue is even, the skin still appears normal, an accumulation of fat in the connective tissue is not yet visible.
  • Stage 2: There are nodules in the fatty tissue of the subcutis, an uneven orange peel skin develops, which is also painful.
  • Stage 3: The connective tissue in the subcutis increases, the skin hardens. Fat bulges develop on the thighs and knees and the pain becomes more intense.

Different degrees of severity of lipoedema

Depending on where the fat and water deposits form, there are the following degrees of severity:

  • Type 1: Fat deposits in the buttocks and hips
  • Type 2: Fat deposits from the hips to the knees
  • Type 3: Fat deposits from the hips to the ankles
  • Type 4: Fat deposits as with type 3, plus in the arms up to the wrists
  • Type 5: Fat deposits as with type 4, plus lymphoedema up to the fingers and toes

Diagnosis: based on the clinical picture

The first step is basic diagnostics, which consists of a detailed medical history and physical examination. Specific questions are asked; for example, how long the fat deposits have been present and whether attempts have been made to reduce them, for example with a balanced diet and regular exercise.

Those affected typically complain that dietary measures and exercise only lead to weight loss on the torso, but not on the legs. Further questions are:

  • Are the fat deposits painful?
  • Do you bruise easily in the affected areas?
  • Are there any family members with the same problem?
  • Do you have any photos from your pre- and post-puberty years?

The doctor looks carefully at the fat deposits and palpates them. It is particularly characteristic that lipedema cannot be pressed in and that any pressure triggers pain. In addition, the pain is felt more strongly on the outside of the leg than on the inside of the same leg, which tends to be the other way round in healthy people.

For monitoring purposes, it is recommended to document further parameters such as weight, body mass index (BMI), waist-to-hip ratio (WHR), waist-to-height ratio (WTR) as well as circumference and volume measurements of the extremities and the daily activity index.

  • Lipohypertrophy, which is similar to lipedema but without water retention
  • Primary lymphoedema
  • Phleboedema, due to chronic venous insufficiency (varicose veins)
  • Dercum’s disease (adipositas dolorosa), a painful accumulation of fat in the legs that only occurs during the menopause
  • Madelung’s disease, a fat accumulation in the neck-neck area or on the shoulders or in the pelvic area, which mainly affects men
  • Obesity

Prevention, early detection, prognosis

You cannot prevent lipoedema as the causes are unknown. This is especially true for women. Men with a family history of lipoedema should avoid alcohol and – if possible – avoid hormone therapy. Although fully developed lipoedema cannot be improved by diet, it is advisable to maintain a normal weight if there are family members with lipoedema.

Course and prognosis

The progression of lipoedema is very slow, it takes several years before it even becomes noticeable. Initially, the fat cells are evenly distributed in the subcutis so that the skin still appears straight. The accumulation of fat in the connective tissue is not yet visible in this first stage. Later, the increase in fatty tissue indicates weight gain. However, measures to reduce weight are not helpful. In the 2nd stage, nodules form in the subcutaneous fatty tissue. The skin becomes uneven and painful. The body proportions gradually shift and the upper body looks narrow compared to the legs. The connective tissue of the subcutis increases and the skin hardens. Fat bulges then form on the thighs and knees and the pain becomes more intense.

If lipoedema remains untreated for years, complications such as lymphoedema, restricted mobility and wounds can develop. Correct and early diagnosis and treatment of lipoedema improves the course of the disease. This means that the development of water retention can be slowed down and the symptoms alleviated. In addition, the risk of complications is reduced and the quality of life is improved.

Self-help groups

The exchange with people who are affected by the same disease can be a great support in coping with the disease. Advice on finding a suitable self-help group is available from Selbsthilfe Zürich. Self-Help Zurich and the University Hospital Zurich are cooperation partners in the national project “Health literacy thanks to self-help-friendly hospitals”.

Treatment: Lipedema is not curable

Lipedema cannot be cured as its causes are unknown. For this reason, the treatment options mainly serve to alleviate the symptoms. However, it is possible to reduce the circumference of the legs or arms. In the In stage 1, treatment is usually not necessary because the fat accumulation in the connective tissue is still painless and invisible. Therefore, the treatment of lipoedema usually begins at the age of 2nd stage.

It is important to try to decongest the affected tissue from the accumulation of water. Diuretics are not effective in this case, they trigger a kind of “boomerang” effect: Initially, they reduce water retention, but this disappears again after therapy, which is why diuretic tablets are not recommended.

The therapy has two objectives:

  1. Elimination or improvement of the findings and complaints (especially pain, edema and disproportion)
  2. The prevention of complications. As the condition progresses with an increase in leg circumference in particular, the risk of dermatological (e.g. macerations, infections), lymphatic (e.g. erysipelas, lymphoedema) and orthopaedic complications (gait disorders, axial misalignments) increases.