Lipoedema, what to do? - dealing with the fat distribution disorder

How do I know if I have lipoedema?

In the early stage , there is often still nothing to see of the lipoedema. The first symptoms include leg pain that increases over the course of the day. These pain symptoms appear to occur without any apparent reason.

There is increased sensitivity to pain when touched or subjected to pressure. Many affected women describe a feeling of tension in their legs. Elevating the extremities does not provide relief.

In addition, even at this early stage of lipoedema, there is a feeling of fatigue in the legs. These symptoms tend to worsen when standing or sitting. Pain caused by lipoedema can reach extreme intensity.

Low air pressure and warm temperatures also exacerbate the symptoms. For example, air travel would cause severe leg pain due to changing air pressure. This pain is the first warning sign for recognizing lipoedema.

Another sign of lipoedema is the excessive tendency to develop bruises and contusions on the lower extremities. Because the disease affects the capillaries in the affected tissue, these tiny vessels burst even with little force. As a result, comparatively minor impacts cause extensive hematomas.

As the disease progresses,  fat deposits develop that increasingly affect the body's proportions. Depending on the distribution pattern of the lipoedema, the legs, buttocks, or hips appear significantly thicker than other parts of the body. This is naturally particularly noticeable in women who were previously slim.

When excess weight is already present, these fat accumations are often not yet noticeable at first. The fat deposits also develop symmetrically on both sides of the body . This symmetry is one of the most important characteristics for recognizing lipoedema.

The visible difference between lipoedema and obesity - general weight gain - becomes clear from the distribution of fat deposits on the body. “Normal” weight gain generally affects all parts of the body.

Although some areas (for example, the buttocks, abdomen, or hips) are more affected than others, the  increasing disproportion is very noticeable in lipoedema. In addition,  orange-peel skin may develop, in which small nodules can be felt beneath the skin.

The hands and feet are generally not affected by pathological fat deposits.  The arms themselves may show symptoms, although this does not occur in every case of lipoedema. If the arms are affected by the fat distribution disorder, the fat is distributed in the same symmetrical pattern as on the legs.

Fat deposits form that end at the ankles or wrists. In severe forms of lipoedema,  overhangs of fatty tissue form, hanging over the ankles like trouser legs. This is why they are also referred to as "saddlebags" or "pump trousers."

Lipoedema can occur in  three different fat distribution patterns :

• Thigh type: Fat deposits occur only on the hips and thighs. Colloquially, this is referred to as "saddlebags."
• Lower-leg type: The lipoedema also extends to the lower legs. It is also referred to as "bundhosen."
• Ankle type: The most severe form of lipoedema, in which a collar-like overhang of fat develops around the ankles, resembling "pump trousers."

Lipoedema tends to worsen. However, its progression may also stop - in some cases, excessive fat deposition ceases for reasons that are currently unknown.

These phases can last for years before further deterioration occurs. In rare cases, the disease may even remain inactive for the rest of a person's life. When lipoedema becomes active, flare-ups often occur, bringing drastic increases in fatty tissue.

In the case of lipoedema, neither regular exercise nor disciplined dieting causes the fatty deposits to recede. This is another clear indication that the fat distribution disorder is present. However, exercise and nutrition can indeed help slow and combat the fat distribution disorder.

What causes lipoedema?

Although the  causes are still unclear, much suggests that hormonal dysfunction causes lipoedema. The  onset of the disease during pregnancy, at the end of puberty, or during menopause is an argument in support of this.

These phases are each associated with major changes in hormone levels. In addition, lipoedema often occurs multiple times within a family, suggesting a genetic predisposition. Unfortunately, research has so far been unable to determine the actual causes of the abnormal fat deposits.

Lipoedema is unknown in children - the disease occurs at the earliest toward the end of puberty . Men are also practically never affected by lipoedema. Only one case is known in which lipoedema was diagnosed in an otherwise healthy man from Taiwan.

Otherwise, the disorders of fatty tissue typical of lipoedema occur in men only in connection with serious diseases that affect hormone levels, for example as a result of liver cirrhosis.

Lipoedema - the three stages

• Lipoedema Stage 1: In the early stage of lipoedema, the “saddlebags” shape is already beginning to emerge. The skin is still smooth, but shows clear signs of orange-peel skin when pinched together. The deeper skin tissue - the subcutaneous tissue - feels thicker and softer than normal at the same time. In some cases, small hard nodules can already be felt under the skin.

• Lipoedema Stage 2: The fat deposits in the tissue have progressed to the point that a distinct “saddlebags” shape has developed. This discrepancy with the size of the lower half of the body is particularly noticeable in women with a slim upper body. The skin's surface is now also marked by dimples and larger nodules. It is no longer referred to as orange-peel skin, but as “mattress skin.” The lipoedema is now clearly recognizable as such.

• Lipoedema Stage 3: In the third stage, the subcutaneous tissue begins to harden. So-called “saddlebags” - pronounced fat flaps - form on the inner thighs and around the knees. The shape of the legs now resembles “pumphose,” with collars of fat hanging down over the ankles. The deforming fat deposits cause areas of skin to rub against each other, resulting in painful chafing wounds. Inflammation can also develop, potentially progressing to dangerous secondary conditions such as shingles. The change in body proportions also forces the legs into an X-shape, which in turn increases stress on the joints. Lymphedema may also develop during this phase.

The transition between the stages of lipedema is gradual. Individual symptoms can also occur in other stages. In particular, the perception of pain varies from patient to patient.

Lipedema associated with lymphedema

Lymphedema resembles lipedema because it causes similar symptoms. However, in this case,  disorders in the drainage of lymphatic fluid cause an accumulation of fluid – not fat. The resulting swellings also affect the backs of the hands and feet, but normally occur on only one side of the body. Lymphedema is also painless.

However, severe lipedema can promote the development of lymphedema. The fat deposits then restrict lymphatic flow, causing additional lymph to accumulate in the tissue. The combined occurrence of these conditions is referred to as lipo-lymphedema .

What helps with lipedema?

Although lipedema is currently not considered curable, there is a ray of hope for women affected by it: the condition can be treated. The first hurdle is  timely diagnosis – incipient lipedema is too often treated as obesity. However, most countermeasures are most likely to be successful in the early stages.

Treatment of the fat distribution disorder aims to counteract symptoms such as pain and an increase in fat deposits. It also seeks to prevent secondary conditions such as skin inflammation or the development of lymphedema.

Complex decongestive therapy (CDT)

The  complex decongestive therapy (CDT)  was originally developed to treat chronic lymphedema. The procedure has since been adapted to treat lipedema as well.

CPE is divided into two phases: an initial decongestion phase is followed by a maintenance phase to stabilise the results achieved. Below, we present the measures included in CPE.

Manual lymphatic drainage (MLD)

 Manual lymphatic drainage (MLD) is a special type of massage. MLD is performed very gently, with minimal pressure, and is intended to support the lymphatic vessels in removing fluid and proteins. The massage generally proceeds from the head end toward the oedema.

In pure lipoedema, lymph fluid usually still flows sufficiently on its own - manual lymphatic drainage is primarily used here for its pain-reducing effect .

The pressure pain caused by lipoedema can be relieved by MLD. This makes it easier for affected women to wear compression stockings or compression bandages.

Compression stockings should be worn continuously from morning until evening for lipoedema

Compression therapy & compression stockings

 Compression therapy is a crucial factor in the treatment of lipoedema and lipo-lymphoedema. In the early stages of lipoedema, consistent use of compression therapy can drastically slow or even halt the progression of the disease.

For treatment to be successful, it is crucial that the patient wears her compression stockings continuously throughout the day from morning until evening.

The compression effect consists in improved microcirculation of the blood reaching the deeper layers of the skin. The compression stocking puts pressure on the skin tissue, causing the capillaries and cells to move closer together.

In this case, shorter routes for blood flow lead to better cell nourishment and facilitate the removal of waste products. At the same time, less fluid can seep into the tissue. If the lipoedema also affects the arms, suitable long compression gloves can also be worn there.

If you are unsure which compression stockings to wear for lipoedema, you should seek medical advice, as there are different types. Basic support stockings are unsuitable because they provide only slight support for the veins.

In the case of lipoedema, medical compression stockings are recommended; they are divided into four classes. Class I stockings exert the least pressure on the tissue, while class IV stockings exert the most.

 Compression bandaging is generally used only for lipo-lymphoedema. It helps drain oedema fluid and is used only as long as the oedema can be reduced. From then on, compression stockings are worn again to treat lipoedema.

Dynamic compression therapy

This relatively new method is an alternative to manual lymphatic drainage. 

With dynamic compression therapy, jacket or trouser cuffs are worn, which have numerous air chambers that can be inflated sequentially from the feet or wrists upward.

By regularly releasing the air and inflating it again, a very similar massage effect to MLD is achieved.

A major advantage of this method is that it can be used for self-treatment.

In some cases, users can completely do without MLD and achieve pain relief and counteract fluid retention themselves with a home device.

Healthy diet and exercise with lipoedema

Unfortunately, it is not possible to cure lipoedema through dieting. However, a healthy diet and physical activity can counteract the formation of new fat deposits.

Since women with lipoedema also often struggle with “normal” excess weight, adopting a healthy lifestyle alongside medical treatment of the fat distribution disorder is generally advisable.

Especially in the early stages of lipoedema, this can significantly slow the further progression of the disease.

What types of exercise are possible with lipoedema?

Light endurance sports and strength exercises are ideal for burning calories and building active muscle mass, which promotes a higher basal metabolic rate. Even daily walks at an increased pace can be a starting point for doing something about the fat distribution disorder. Compression stockings should be worn during exercise.

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Swimming and water aerobics are recommended in any case, as water is an excellent medium for natural compression therapy. Exercising in water is easy on the joints because buoyancy supports the body's weight.

Because water pressure is highest at the feet and decreases toward the surface, aqua gymnastics or aqua aerobics can effectively support venous blood flow and the drainage of edema.

Water-based exercise is one of the sports often recommended for patients with lipoedema

Which exercises you can do depends, for example, on your age, current fitness level, and the stage of your lipoedema. Discuss your training options with your doctor or therapist. 

Physical activity will primarily help you avoid additional excess weight and stop the lipoedema from progressing.

The fat deposits caused by lipoedema itself remain unaffected. The psychological benefits of physical activity should also not be overlooked. Improving physical performance, building muscle, and sticking to a training plan gives you the feeling that you are accomplishing something - making progress.

What is the healthiest diet for lipoedema?

The healthiest diet for lipoedema is one that provides the body with all the important nutrients while controlling calorie intake and avoiding unhealthy nutrients.

The key is to find a diet that you can maintain for life . Diets do not help against lipoedema and sooner or later come to an end. We recommend speaking with nutrition experts to find a balanced diet that takes your individual circumstances into account.

Lipoedema: What can you do? Here are some general tips for a balanced diet with lipoedema:

• Use healthy fats, such as those found in various nuts or seeds. Avoid margarine or butter whenever possible.

• Eat a low-salt diet. Salt binds water in the body - excess salt is then excreted in the urine, which can potentially lead to a lack of fluids.

• In general, it is important to drink enough. An adult should normally consume at least two liters of water a day. You should avoid sugary drinks and alcohol if you have lipoedema.

• Eat little meat and cheese - you do not have to give them up entirely, but you should prefer lean, low-calorie varieties.

• Vegetables are among the best things you can give your body. Most vegetables contain so few calories that you can eat your fill of them several times a day. Their fiber promotes digestion, and they also help keep blood sugar levels stable.

• Fruit is also healthy, but it can raise blood sugar levels. Enjoy it in moderation. Sweets, white bread and other foods that rapidly raise blood sugar levels should be avoided.

A healthy and balanced diet is particularly important with lipoedema

Liposuction - surgery to reduce fatty tissue

 Liposuction is not conventional liposuction, but a specialised procedure for the targeted removal of the pathological fat deposits associated with lipoedema. During liposuction, the suction cannula is guided exclusively parallel to the lymphatic vessels to prevent injury to them.

The operation requires precise knowledge of the course of the lymphatic vessels and should only be performed by appropriately trained medical professionals.

Liposuction can tremendously improve the situation of affected women. When performed successfully, the operation can:

• remove retained fluid and reduce pressure-related pain or even result in freedom from pain

• ensure that MLD is needed less frequently or can be discontinued and, in some circumstances, even make wearing compression stockings for lipoedema unnecessary

• normalise the proportions of the affected body parts and thereby give the patient greater self-confidence

• reduce or eliminate existing fat folds and deep creases where sore areas can develop

• remove fat deposits on the inner sides of the legs, preventing them from rubbing against each other when walking, which avoids skin irritation and normalises the gait

• reduce the tendency to develop bruises and haematomas

• prevent lipoedema from developing into lipo-lymphoedema

The principle of liposuction consists of the gentle and targeted removal of pathological fat deposits

Liposuction is not a cure-all for lipoedema. It can significantly alleviate the symptoms, and sometimes even stop them - but it cannot cure lipoedema. However, the patient's quality of life should improve significantly.

As with many chronic diseases, the psychological component of lipoedema should not be underestimated. Especially patients who previously had pronounced symptoms report a tremendous improvement in their well-being after liposuction - the change brought about by surgery is most noticeable in the late stage of lipoedema.

However, liposuction is  most effective  when it is performed as early as possible, in the  first or early second stage  of lipoedema. To maintain the results of the operation in the long term, the patient must demonstrate lifelong discipline. A healthy diet and physical activity are essential.

In many cases,  wearing compression stockings to treat lipoedema must also be continued. However, in addition to proportional improvements, the  reduction in pain sensitivity in particular can improve quality of life.

Bear in mind that this is an operation, which should be preceded by a  thorough medical examination . It must be weighed on a case-by-case basis whether the procedure is advisable or whether contraindications argue against it.

It is best to obtain several medical opinions before deciding to undergo liposuction.

When is liposuction not advisable?

Some patients approach liposuction with very high expectations. It should be noted that it is difficult to predict how successful the procedure will ultimately be.

The operation can alleviate lipoedema, but it cannot stop it. In addition to psychological factors, it is particularly important to weigh up  health-related reasons that could argue against liposuction :

• Is the patient able to tolerate the operation well, which may require local anesthesia or (rarely) general anesthesia?

• Does the patient have any allergies to the anesthetics used?

• Are there any diseases or damage affecting the heart, liver, kidneys, or lungs?

• Is the patient prone to cramps or thrombosis?

• Is the patient taking anticoagulant medication?

• Is there generalized inflammation of the fatty tissue? (panniculitis)

• Is the patient pregnant?

Some contraindications make a special liposuction method necessary. If the patient has very lax skin or a very high body weight, up to and including generalized obesity, water-jet-assisted liposuction (WAL) under general anesthesia is presumably the only option.

Psychotherapy - accepting the disease

The effects of lipoedema, ranging from pain to the loss of a body shape perceived as aesthetically pleasing, also have a considerable impact on the psyche. Affected women often suffer from a negative self-image, sometimes leading to depression.

These are often accompanied by  eating disorders , which in turn lead to a worsening of the clinical picture.

It can therefore be very beneficial to support lipoedema treatment with accompanying psychotherapy . Accepting the condition and learning to lead a fulfilling life despite it is an important goal.

Can lipoedema be stopped?

According to current medical knowledge, lipoedema itself is incurable, as the causes of the condition have not been clarified. Although lipoedema itself cannot be stopped, the right treatment and lifestyle can slow the symptoms down and in some cases even halt them.

The earlier the disorder of fat distribution is detected and treated, the better the chances of success.

What happens if lipoedema is not treated?

If lipoedema is not treated, there is a high probability that it will become increasingly worse with further flare-ups. The more pronounced the symptoms, the more difficult they may be to treat.

When fat deposits reach a critical point in stage three lipoedema, the affected skin, joints and, of course, mental health are increasingly impacted. The development of secondary conditions such as lipo-lymphoedema becomes more likely.

If the disorder of fat distribution is treated correctly, it is possible to achieve a condition in which the effects of lipoedema remain under control. This may require discipline and various lifestyle changes, but the effort is certainly worthwhile.

What to do about lipoedema? Conclusion:

Lipoedema is a chronic condition that can cause great physical and emotional suffering. However, affected women are no longer helpless in the face of it, as lipoedema can be treated in various ways.

Early detection of the condition is crucial, as it is still too often dismissed as being overweight. If you believe you have early-stage lipoedema, see a doctor who will take your concerns seriously.

The destigmatization of the chronic disorder of fat distribution is progressing and increasingly bringing patients out of isolation.

In addition to new treatment methods, the field of fashion has also evolved - the unavoidable compression stockings are now available in fashionable designs that enable an attractive and confident appearance .

We wish all women with lipoedema the best possible treatment outcome and a confident approach to their condition!