Lipedema is a chronic condition that many women fear. It is one of the so-called “taboo conditions", which people are reluctant to talk about. In the case of lipedema, this is presumably because its effects can severely affect body aesthetics, while its cause is largely unknown.
Only relatively recently has increased media coverage helped prevent lipedema from being hastily dismissed as obesity and spared affected women, who are often very distressed, from additional burdens.
In this article, we look at this fat distribution disorder, explain how you can recognize lipedema and what options are available for treatment .
Here is an overview of the individual subtopics – click to jump to the section you want.
- What is lipedema?
- How do I know if I have lipedema?
- Lipedema - the three stages
- What can you do about lipedema?
- Complex Physical Decongestive Therapy (KPE)
- Liposuction - the operation to reduce fatty tissue
- Can lipedema be stopped?
- What happens if lipedema is not treated?
What is lipedema?
Lipedema – what is it? Lipedema is a chronic fat distribution disorder, which affects women exclusively . It causes mild to very pronounced accumulations of fatty tissue that cannot be eliminated or worked off through exercise or dieting.
The buttocks and legs are primarily affected by this fat distribution disorder, but fat can also accumulate in the arms. A feeling of heavy legs and pain even with light pressure are also among the symptoms.
Depending on the severity of lipedema, psychological distress can accompany the condition, which may cause anything from an impaired sense of one’s body to severe physical limitations.
Greater awareness, public recognition and destigmatization of lipedema are highly desirable. According to a 2011 study (Marshall and Schwahn-Schreiber) , almost ten percent of women in this country are affected by visible signs of lipedema – more than three million.
However, it takes an average of up to ten years for lipedema to be diagnosed and treatment to begin. In a quarter of known cases, it even took around 30 years for the condition to be correctly diagnosed.
Public health insurers are also only slowly beginning to support existing therapies, often with little effectiveness, even though lipedema can indeed be treated.
How do I know if I have lipedema?
In the early stages , lipedema is often not yet visible. The first symptoms include leg pain that increases over the course of the day. This pain appears to occur for no apparent reason.
A high sensitivity to pain from touch and pressure develops. Many affected women describe a feeling of tightness in their legs. Elevating the limbs does not bring relief.
Additionally, feelings of fatigue in the legs can occur even in this early stage of lipedema. These symptoms tend to worsen when standing or sitting. Pain caused by lipedema can become extremely severe.
Low air pressure and warm temperatures also worsen the symptoms. For example, a flight would cause severe leg pain due to changes in air pressure. This pain is the first warning sign of lipedema.
Another sign of lipedema is an excessive tendency to develop bruises and hematomas on the lower extremities. Because the disease affects the capillaries in the affected tissue, these tiny vessels burst even under minimal force. As a result, relatively minor bumps can cause extensive bruising.
As the disease progresses, fat deposits develop, increasingly affecting the body’s proportions. Depending on the distribution pattern of the lipedema, the legs, buttocks or hips may appear significantly larger than other parts of the body. This is particularly noticeable in women who were previously slim.
When someone is already overweight, these fat deposits often go unnoticed at first. The fat deposits also form symmetrically on both sides of the body . This symmetry is one of the most important signs for recognizing lipedema.
The visible difference between lipedema and obesity — general weight gain — becomes apparent in 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 lipedema. Cellulite can also develop, with small nodules that can be felt under the skin.
The hands and feet are generally not affected by abnormal fat accumulation. Symptoms can also occur on the arms themselves, although this does not happen with every case of lipedema. 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 lipedema, overhangs of fatty tissue form, hanging down over the ankles like trouser legs. This is why they are also known as “saddlebags” or “bloomers.”
Lipedema can occur in three different fat distribution patterns :
- Thigh type: Fat deposits occur only on the hips and thighs. Colloquially, this is called “saddlebags.”
- Lower leg type: Lipedema also extends to the lower legs. It is also referred to as “breeches.”
- Ankle type: The most severe form of lipedema, in which a collar-like overhang of fat forms around the ankles, reminiscent of “bloomers.”
Lipedema tends to worsen. However, its progression can also stop - in some cases, the excessive fat accumulation stops for reasons that are still unknown.
These phases can last for years before further worsening occurs. In rare cases, the disease even remains inactive for life. When lipedema becomes active, flare-ups often occur, bringing drastic increases in fatty tissue.
In cases of lipedema, neither regular exercise nor disciplined dieting causes the fat deposits to recede. This is another clear indication that a fat distribution disorder is present. However, exercise and nutrition can certainly help slow and combat the fat distribution disorder.
What causes lipedema?
The causes are still unclear, but much points to hormonal dysfunctions being responsible for lipedema. The onset of the disease during pregnancy, at the end of puberty, or during menopause is an argument for this.
During these phases, major changes occur in hormone levels. Lipedema also often affects multiple members of the same family, suggesting a genetic predisposition. Unfortunately, research has not yet identified the actual causes of these abnormal fat deposits.
Lipedema is unknown in children - the condition does not occur before the end of puberty . Men are also almost never affected by lipedema. Only one case is known in which lipedema was diagnosed in an otherwise healthy man from Taiwan.
Otherwise, the fat tissue disorders typical of lipedema occur in men only in connection with serious illnesses that affect hormone levels (for example, as a result of cirrhosis of the liver).
Lipedema - the three stages
- Stage 1 lipedema: In the early stage of lipedema, the characteristic “saddlebag” shape is already beginning to appear. The skin is still smooth, but shows clear signs of orange-peel skin when pinched. The deeper layer of skin - the subcutaneous tissue - feels thicker and softer than normal. In some cases, small, hard nodules can already be felt under the skin.
- Stage 2 lipedema: Fat deposits in the tissue have progressed to the point that a clear saddlebag shape has developed. The contrast with the size of the lower body is now very noticeable, especially in women with a slim upper body. The skin's surface is also marked by dimples and larger nodules. It is no longer described as orange-peel skin, but as “mattress skin.” Lipedema is now clearly recognizable.
- Stage 3 lipedema: In the third stage, the subcutaneous tissue begins to harden. So-called “fat pads” - prominent fat deposits - develop on the inner thighs and around the knees. The legs now take on a “breeches” shape, with collars of fat hanging over the ankles. These deforming fat deposits cause areas of skin to rub against each other, leading to painful chafing sores. Inflammation is also a risk, and can develop into dangerous secondary conditions such as shingles. Changes in body proportions also force the legs into an X-shaped position, which in turn increases strain on the joints. Lymphedema may also develop at this stage.
The transition between the stages of lipedema is gradual. Individual symptoms can also occur in other stages. Pain in particular varies from patient to patient.
Lipedema in combination with lymphedema
Lymphedema resembles lipedema because it causes similar symptoms. However, in this case, disruptions in lymph fluid drainage cause a buildup of fluid - not fat. The resulting swelling also affects the backs of the hands and feet, but usually occurs 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 lymph flow, causing additional lymph to accumulate in the tissue. The combination of these conditions is called lipo-lymphedema .
What helps with lipedema?
Although lipedema is currently considered incurable, there is a glimmer of hope for affected women: the disease can be treated. The first hurdle is timely diagnosis - early lipedema is too often treated as obesity. However, most countermeasures are most effective in the early stages.
Treatment for the fat distribution disorder aims to counteract symptoms such as pain and the increase in fat deposits. It also seeks to prevent secondary conditions such as skin inflammation or the development of lymphedema.
Warning: Never use laxatives or water pills (diuretics). These products are not suitable for treating lipedema - they may even make it worse.
Water loss can increase the relative protein concentration in the fatty tissue. Once the effect of the pills wears off, the tissue then attracts even more water, causing the fat deposits to grow even further.
Complex Physical Decongestive Therapy (KPE)
Complex Physical Decongestive Therapy (KPE) was originally developed to treat chronic lymphedema. The treatment has since been adapted to also treat lipedema.
KPE is divided into two phases: an initial decongestion phase followed by a maintenance phase to preserve the results achieved. Below, we introduce the measures that are part of KPE.
Manual lymphatic drainage (MLD)
Manual lymphatic drainage (MLD) is a specialized type of massage. MLD is performed very gently, using minimal pressure, and is intended to help the lymphatic vessels remove fluid and proteins. Massage is generally performed from the head toward the oedema.
With lipoedema alone, lymphatic fluid usually still drains sufficiently on its own. Manual lymphatic drainage is used here primarily for its pain-relieving effect .
The pressure pain caused by lipoedema can be relieved with MLD. This makes it easier for affected women to wear compression stockings or compression bandages.
For lipoedema, compression stockings should be worn continuously from morning until evening
Compression therapy & compression stockings
Compression therapy is a key factor in treating lipoedema and lipo-lymphoedema. In the early stages of lipoedema, consistent use of compression therapy can drastically slow the progression of the disease or even stop it altogether.
For treatment to be successful, it is essential that the patient wears her compression stockings continuously throughout the day from morning until evening.
The compression effect consists of improved blood microcirculation in the deeper layers of the skin. The compression stocking puts pressure on the skin tissue, bringing capillaries and cells closer together.
In this case, shorter pathways for blood flow lead to better cell nourishment and make it easier to remove waste products. At the same time, less fluid can seep into the tissue. If lipoedema also affects the arms, suitable long compression gloves can be worn there too.
If in doubt, consult a medical professional about which compression stockings to wear for lipoedema, as there are different types. Ordinary support stockings are unsuitable because they provide only mild support for the veins.
In cases 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 usually 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 procedure is an alternative to manual lymphatic drainage.
Dynamic compression therapy involves wearing jacket or trousers cuffs, which have numerous air chambers that can be inflated one after another, starting at the feet or wrists and moving upward.
Regularly releasing the air and inflating it again achieves a very similar massage effect to MLD.
A major advantage of this method is that it can be used for self-treatment .
In some cases, users can completely forgo MLD and use a home device to reduce pain and counteract fluid retention.
Healthy eating and exercise with lipoedema
Unfortunately, it is not possible to cure lipoedema through dieting. However, a healthy diet and physical activity can help prevent new fat deposits from forming.
Since women with lipoedema also often struggle with “normal” excess weight, a healthy lifestyle is generally advisable alongside medical treatment for the fat distribution disorder.
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 suitable for burning calories and building active muscle mass, which helps increase the basal metabolic rate. Even daily brisk walks can be a start in addressing 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 your feet and decreases toward the surface, aqua gymnastics or water aerobics can effectively support venous blood flow and fluid drainage from edema.
Water aerobics is one of the sports commonly recommended for women with lipoedema
Which exercises you can do depends, for example, on your age, current fitness level, and the stage of your lipoedema. Discuss your exercise options with your doctor or therapist.
Physical activity will mainly help you avoid additional excess weight and prevent your lipoedema from worsening.
The fat deposits caused by lipoedema itself are unaffected. The psychological effects of physical activity should also not be overlooked. Improving your physical performance, building muscle, and sticking to a training plan can give you a sense of achievement and progress.
What is the healthiest diet for lipoedema?
The healthiest diet for lipoedema is one that provides the body with all the essential nutrients while keeping calorie intake under control and avoiding unhealthy nutrients.
The key is to find an eating plan you can stick to for life . Diets don't help with lipoedema and sooner or later they 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 and seeds. Avoid margarine and butter whenever possible.
- Eat a low-salt diet. Salt binds water in the body - excess salt is excreted in the urine, which can lead to dehydration in some cases.
- In general, it's important to drink enough. An adult should usually consume at least two liters of water a day. If you have lipoedema, avoid sugary drinks and alcohol.
- Eat little meat and cheese - you don't have to cut them out completely, but you should favor lean, low-calorie options.
- Vegetables are among the best things you can put into your body. Most vegetables are so low in calories that you can eat your fill several times a day. Their fiber promotes digestion and helps keep blood sugar levels stable.
- Fruit is also healthy, but it can raise blood sugar levels. Enjoy it in moderation. Avoid sweets, white bread and other foods that rapidly raise blood sugar levels.
A healthy, balanced diet is especially important with lipoedema
Liposuction - the operation to reduce fatty tissue
Liposuction is not conventional liposuction, but a specialised procedure for the targeted removal of the abnormal 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 greatly improve the situation of women affected by lipoedema. When performed successfully, the operation can:
- remove retained fluid and reduce pressure pain or even eliminate pain altogether
- ensure that MLD can be performed less often or stopped, and in some cases even make wearing compression stockings for lipoedema unnecessary
- normalise the proportions of the affected body parts, thereby boosting the patient's self-confidence
- reduce or remove existing fat pads and deep folds where sores can develop
- remove fat deposits on the inner thighs so that they no longer rub together when walking, preventing skin irritation and normalising gait
- reduce the tendency to bruising and haematomas
- prevent lipoedema from developing into lipo-lymphoedema
The principle of liposuction is the gentle and targeted removal of the abnormal fat deposits
Liposuction is not a cure-all for lipoedema. It can greatly relieve symptoms, sometimes even stop them - but it cannot cure lipoedema. However, the patient's quality of life should improve significantly.
As with many chronic illnesses, the psychological component of lipoedema should not be underestimated. In particular, patients with previously pronounced symptoms report an enormous improvement in well-being after liposuction - the change brought about by surgery is most noticeable in the late stages of lipoedema.
Liposuction is most effective when performed in the first or early second stage of lipedema. To maintain the results of the operation long term, the patient must remain disciplined for life. A healthy diet and physical activity are essential.
In many cases, wearing compression stockings to manage lipedema must also be continued. But in addition to improving proportions, a reduction in pain sensitivity can especially improve quality of life.
Bear in mind that this is an operation that should be preceded by a thorough medical examination . The benefits of the procedure and any contraindications must be weighed up for each patient individually.
It is best to seek several medical opinions before deciding to have liposuction.
When should liposuction be avoided?
Some patients have very high expectations of liposuction. It is important to bear in mind that it is difficult to predict how successful the procedure will ultimately be.
The operation can alleviate lipedema, but it cannot stop it. In addition to psychological considerations, it is important to weigh up health-related reasons that could rule out liposuction :
- Is the patient able to tolerate the operation, 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 adipose tissue? (panniculitis)
- Is the patient pregnant?
Some contraindications make a specialized liposuction technique necessary. For example, if the patient has very loose skin or is severely overweight, up to and including generalized obesity, only water-assisted liposuction (WAL) under general anesthesia may be possible.
Psychotherapy – accepting the condition
The effects of lipedema, from pain to the loss of a body shape considered aesthetically pleasing, also have a considerable impact on mental health. Affected women often suffer from a negative self-image, sometimes even leading to depression.
These are often accompanied by eating disorders , which in turn lead to a worsening of the condition.
It can therefore be very helpful to support lipedema treatment with concurrent psychotherapy . Accepting the condition and learning to lead a fulfilling life despite it is an important goal.
Can lipedema be stopped?
Based on current medical knowledge, lipedema itself is incurable, as the causes of the condition have not been established. While lipedema itself cannot be stopped, the right treatment and lifestyle can slow the symptoms and, in some cases, even halt their progression.
The earlier the disorder of fat distribution is detected and treated, the better the chances of success.
What happens if lipedema is not treated?
If lipedema is not treated, there is a high likelihood that it will continue to worsen with further flare-ups. The more pronounced the symptoms, the harder they can sometimes be to treat.
When fat deposits reach a critical point in the third stage of lipedema, the affected skin, joints and, of course, mental health are increasingly affected. The development of secondary conditions such as lipo-lymphedema becomes more likely.
If the disorder of fat distribution is treated correctly, it is possible to achieve a state in which the effects of lipedema remain under control. This may require discipline and various lifestyle changes, but the effort is certainly worthwhile.
Lipedema: What can you do? In conclusion:
Lipedema is a chronic condition that can cause significant physical and emotional suffering. But women affected by it are no longer helpless, as lipedema can be treated in various ways.
Early diagnosis is crucial, as the condition is still too often dismissed as excess weight. If you think you may have early-stage lipedema, see a doctor who will take your concerns seriously.
The destigmatization of this chronic disorder of fat distribution is progressing, increasingly bringing patients out of isolation.
Alongside new treatment methods, fashion has also come a long way - the unavoidable compression stockings are now available in fashionable designs that allow for an attractive, confident appearance .
We wish all patients with lipedema the best possible treatment outcomes and the confidence to manage their condition!
