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Lipedema is a pathological fat distribution disorder that occurs mainly in women on the arms and legs and leads to uncontrolled deformities on the body. Especially in the early stages, lipedema is rarely recognised as such. Until they are diagnosed and treated, many patients go through a long period of suffering – physically and psychologically as well as aesthetically.
Unfortunately, affected women often are not taken seriously by their surroundings or even by doctors. The following point, however, is essential:
Lipedema is a disease that cannot be regulated by exercise or a change in diet.
In order to alleviate the suffering of patients and to ensure a better quality of life again, it is helpful to obtain a diagnosis as early as possible – if necessary by multiple doctors – to initiate conservative therapy or permanent removal of the pathological fat deposits.
The team of specialists at LIPOCURA® will gladly support you from the initial diagnosis to the planning of a treatment concept (conservative or liposuction/fat removal) that is individually tailored to your needs. Moreover, we remain at your side with tips and advice.
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Table of contents
The structure of the fatty tissue in the subcutis layer is altered in patients with lipedema. The lymph vessels cannot remove water properly, which can eventually lead to chronic lymphoedema. Moreover, it causes fibrotisation (increase in connective tissue) and scarring of the subcutaneous fatty tissue. These scars are palpable under the skin.
The condition usually starts during puberty, but it can also break out later as a result of hormonal changes. The most common examples are pregnancy, menopause or taking the contraceptive pill. However, these people are usually already predisposed to lipedema.
The most important question first: Is lipedema caused by being overweight? The answer is clearly: No. Lipedema is not caused by a lack of exercise or poor nutrition, but by an uncontrolled change in the fatty tissue. However, concomitant obesity can have a negative impact on the course of the disease.
It has not yet been definitively resolved why lipedema develops in the first place. However, various factors promote the development or severity of lipedema. Concomitant diseases have also been proven.
In many cases, there is a genetic predisposition that is inherited from the family gene pool. This means that, if lipedema occurs in the mother and/or grandmother, there is a high probability that the daughter will also be affected.
The number of fat cells is fixed until the age of 20, after which they only increase or decrease in size. So why does the disease break out after the age of 20? Since it mostly affects women, lipedema is often associated with oestrogen-related changes. Dr Katrin Lossagk, MD answers the most frequently asked questions about the hormonal causes of lipedema:
The lymph vessels complement the body’s vascular system and transport body fluids, blood cells and nutrients (fats) that are secreted by the cells. In the process, the tiny lymph capillaries absorb tissue water (called lymph) and pass into the larger lymphatic channels and ultimately into the blood vessel system of the superior vena cava.
In lipedema patients, the permeability of the blood vessel capillaries is impaired, which results in more fluid being released into the connective tissue. The fat cells of the subcutis absorb this fluid and put more pressure on the vascular system, creating a vicious cycle and causing even more fluid to be released from the blood vessels. The lymph vessels are compressed and can consequently remove less fluid. This results in an accumulation of water in the tissue, a so-called oedema.
Apart from the aesthetics and the accompanying psychological strain, the physical strain plays a key role. How severe the symptoms of lipedema become varies from person to person. If the disease is not treated, lymphoedema can progress over the years. Regardless of the stage the patient is in, various symptoms can gradually appear.
Often there is a strong feeling of tension and the sensitivity to touch gradually increases – not to mention, the restriction of movement that comes with severely swollen legs. The pressure pain is caused by the accumulation of water in the fat cells, but pain is also caused by inflammation under the skin. Due to the increase in volume, pressure is exerted on the surrounding tissue and tension is created. Consequently, the skin reacts painfully to touch and pressure. The more the lipedema progresses, the more severe the symptoms can become. Legs, arms or hips can then hurt even without applying pressure, and their circumference increases.
The skin of lipedema patients tends to bruise very easily. This is attributable to the impaired capillary permeability of the blood vessels. As a result, the fluids and red blood cells are more easily pushed through the vessel wall into the surrounding tissue. As a result, even slight impacts can cause bruises (haematomas).
Damage to the small blood vessels (microangiopathy), which often occurs in addition to lipedema, can also lead to bruising.
The water that accumulates in the tissue also causes oedema, which makes the tissue very taut. This build-up of water eventually causes pressure pain (tenderness) – a leading symptom of lipedema.
The psychological aspect should not be ignored either. In most cases, people do not realise that the person suffers from lipedema and that the fat deposits are not due to obesity or lack of discipline.
Even some doctors do not take the suffering of their lipedema patients seriously, stirring up further uncertainty and a lack of confidence in potential treatments.
Shame and social isolation as well as depression are frequent consequences or accompanying symptoms of lipedema. In addition, patients’ feelings of a complete loss of control accompanied by massive changes in their daily routine can also have an enormous impact on their psychological wellbeing.
Any pain caused by lipedema is not related to its stage of development. Patients can even suffer from pain in the first stage, when no major changes are visible and the tissue is soft. However, experience shows that this pain increases with the severity of the condition. Stinging and burning are characteristic. In addition to the sensitivity of the skin to pressure, chafing and the resulting inflammation cause pain.
If the arms and legs feel cold or heavy, it is not due to the stage of lipedema; rather it varies from patient to patient.
Some factors temporarily promote the symptoms, making them worse in certain situations:
• Warm weather • Sauna • Standing for a long time • Sitting for a long time • In the evening
Are you unsure whether you have lipedema? We would like to help you find the answers. With our specially created self-test, the first in Germany, you can get an initial assessment of whether you might have lipedema. This information can not only serve as a helpful clue, but also as a valuable basis for the diagnostic discussion with our specialists.
Take a few minutes and do the test:
Do you suffer from lipedema? Find out!
Lipedema is unique in each affected person – both in terms of location and intensity. While some women are only slightly impaired, others may suffer from severe symptoms. Basically, the disease progression can be divided into four stages.
Stage I
In the first stage of lipedema, the skin is still mostly smooth, but may start to look like an orange peel. Thickened subcutaneous fatty tissue accumulates in the area of the thighs, among other places, which results in so-called saddlebags.
More about Lipedema stage 1.
Stage II
Large fat pads form, fibrosis tissue, which is perceived as ‘painful noodles’ under the skin. The saddlebags become more pronounced and the knees and ankles are clearly thickened.
More about Lipedema stage 2.
Stage III
In the third stage of lipedema, the subcutaneous tissue increases uncontrollably and becomes severely hardened. Folds of fat droop on the inner sides of the thighs, knees and ankles, causing chafing and significant restrictions in freedom of movement. The weight of the hanging fat bulges puts additional strain on the joints, which can lead to deformities.
More about Lipedema stage 3.
Stage IV – Lipo-Lymphoedema
Officially, lipedema is only divided into three stages. However, if lymphoedema also develops, it can be defined as a fourth stage. So-called lipo-lymphoedema, in which fluid builds up in addition to fat, is often the result of lipedema that has gone untreated for a long time.
Lipedema can be recognised by an increase in subcutaneous fat tissue, which is usually first distributed on the extremities (legs and arms) and, as the disease progresses, eventually affects the hips and buttocks (in the form of so-called saddlebags) and other areas. The distribution of fat on the legs and arms can vary greatly from person to person. Some patients suffer more from fat increase in the area of the upper or lower legs (or upper or lower arms); in other patients, the entire leg or arm may be affected. However, this fat distribution disorder always occurs symmetrically.
Painful fat deposits in the face can be very distressing for lipedema patients. Symptoms involving facial expressions and limitations, for example, when moving the neck, are well-known side effects. Many of the women affected feel uncomfortable in their own bodies and find the uneven distribution of fat extremely unattractive. Liposuction – or facial lipo – can achieve lasting success in removing the diseased fat cells and alleviating the symptoms.
Full and firm breasts are one of the most important feminine attributes of a woman. They represent youth, vitality and health. Unfortunately, however, disproportionate fat distribution can also occur here as a result of lipedema. Affected women not only feel diminished in their aesthetic appearance and femininity; they also suffer from symptoms such as severe pain, itching and sensitivity to pressure.
Lipedema of the abdomen is particularly stressful for women affected by it. In addition to occasional severe pain, itching and sensitivity to pressure – to name just a few of the lipedema symptoms – the focus here is also on the aesthetic appearance. The disproportionate distribution of fat disrupts the natural silhouette of the body. Often wrongly diagnosed as obesity, many patients suffer from the progressive disease for years.
Lipedema can occur almost anywhere on the body, even in the genital area. It causes pain while walking or during sexual intercourse. Patients often suffer from strong feelings of shame towards their surroundings and especially towards their partner. Conservative treatment options provide only minor relief, but liposuction can be very effective.
Our experience has shown that patients complain of lipedema symptoms in a wide variety of areas. Some lipedema patients also have painful fat deposits on their back, for example, on the shoulder blades, the bra line or in the area of the neck (‘buffalo hump’). Conservative treatment options can temporarily alleviate the symptoms, but only liposuction can achieve lasting improvements.
Lipedema of the arms can lead to functional problems: an unpleasant feeling of coldness and heaviness, sensitivity to pressure and even severe pain when touched. Although the disease is not yet considered curable, as there is still no complete investigation of causes, the existing complaints can be significantly alleviated or even completely eliminated with liposuction.
Many women desire a shapely bottom – especially lipedema patients. This is because the pathological fat distribution disorder not only makes the buttocks misshapen and excessively voluminous, but also causes significant discomfort. Depending on the stage, lipedema causes severe pain, sensitivity to pressure (especially while sitting) and restrictions in mobility.
Even and slender legs – the wish of many women. But for people with lipedema, this seems to be especially unattainable at first. Painful limbs, pressure-sensitive, swollen areas and a feeling of heaviness are frequent accompanying symptoms. Patients who suffer from the painful and unsightly fat distribution disorder often endure years of suffering before they seek treatment.
In contrast to the classification by stages, the classification by types focuses on the affected areas of the body.
The subcutaneous fat increases, especially in the area of the arms and legs, buttocks and hips, resulting in so-called saddlebags.
Lipedema has spreads to the knees and shows increased formation of fat on the inner sides of the knees.
The condition extends from the hips to the ankles.
Lipedema extends to affect the arms. The wrists are not affected.
This classification does not apply to every patient. Some sufferers experience lipedema-like symptoms all over their body. They will find out whether they are affected or not during a closer examination by the specialist as part of an initial personal consultation.
We would like to emphasise that the following assessments are based on our many years of experience in treating and working with lipedema patients. Lipedema itself cannot be proven beyond doubt directly on the basis of any cell parameters. Therefore, the definition and the relatively restrictive view that lipedema can only affect the extremities is not correct in our view.
The clinical symptoms are important for the diagnosis. Only if, in addition to the known symptoms, there are complaints such as pressure pain, does one speak of lipedema and no longer of lipohypertrophy. So far so good. But what do we call a fat distribution disorder that occurs in other places, causes pain, but, according to the S1 Guideline, does not affect areas defined as lipedema? In any case, not lipedema.
We want to help our patients and not get lost in definitions. Therefore, the following are areas where we have found painful, partly disfiguring and massively impairing fat deposits in patients. We are still talking about diseased areas, but not directly about lipedema areas! Typically, in the course of a surgical lipedema therapy, we observe that a painful accumulation of fat also develops more or less surprisingly in other areas. It is very important to us that we inform our patients about this in good time, i.e. before the first operation.
The following is a list of the areas of the body where, according to our observations, painful fat distribution disorders or volume increases can occur, sorted in descending order of probability:
Lipedema is considered a ‘woman’s disease’. This is partly due to the fact that men have a different adipose tissue structure than women. However, although rare, men can also develop lipedema, for example after hormone therapies, as a result of severe liver disease or due to hormonal disorders. Treatment is the same for any gender.
Not all signs of lipedema appear at the same time or to the same degree. Diagnosis is especially difficult in the first stage. Lipedema is often only recognised when the disease spreads and the symptoms get worse. Unfortunately, the lipedema phenomenon is still largely unknown to many doctors, which explains why it is often confused with obesity.
As specialists in lipedema, we have a lot of experience with the pathology and symptoms, allowing us to determine at an early stage whether you are suffering from it. We use a variety of diagnostic methods to do this.
The patient’s family or medical history often provide the information needed to confirm a suspected case of lipedema. Relatives who have also been diagnosed with the disease are often an indication.
By performing a pinch test on the arms or legs, the doctor can determine if it is causing increased pain. Furthermore, in advanced stages, fibrosis tissue can be felt by palpating the skin.
Ultrasound examination is generally not considered reliable for diagnosing lipedema, as it cannot distinguish ‘normal’ fat from lipedema fat. However, at LIPOCURA® we use this method in conjunction with other diagnostic procedures to measure the thickness of the fat layer. This data makes it easier for us to plan the subsequent treatment.
Lymphoedema can be diagnosed with the help of Stemmer’s sign. This test involves trying to lift the fold of skin over the second and third toes. If the fold is thickened, difficult or cannot be lifted at all due to the hardening of the tissue, Stemmer’s sign is positive and lymphoedema is present. It should be noted that a negative Stemmer’s sign does not exclude lymphoedema.
Get an additional professional opinion. If you are unsure or have already consulted other doctors, we offer you the possibility of a second opinion. As experienced lipedema specialists, we are here to answer your questions, provide you with further information and make a detailed diagnosis.
As mentioned above, people often make false diagnoses or confuse lipedema with obesity. Even with ultrasound measurements, it is difficult to differentiate between the various forms.
Below we have summarised the most important distinguishing features for differential diagnosis.
Lipedema experiences – Profile of Sandra
From Sandra – Patient at LIPOCURA®
Lipedema experiences – Profile of Diana
From Diana – Patient at LIPOCURA®
Lipedema experiences - Profile of Laura
From Laura – Patient at LIPOCURA®
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