Lipoedema
The disease of lipoedema is a painful fat distribution disorder that almost exclusively affects women. In cases of lipoedema, fat cells are deposited increasingly at the extremities. These fat accumulations can be located on the legs, buttocks, hips or arms. The tissue there is particularly sensitive to pressure and pain. In contrast to the symptoms, the fat accumulation itself is resistant to sports and diet. You can learn more about the latest findings regarding the causes, symptoms, diagnosis and treatment for lipoedema here.
Definition and etymology of lipoedema
Lipoedema (Greek: Lip = fat) is a painful dysfunction of the fatty tissue. It is a disproportionate, symmetrical fat distribution disorder that almost exclusively occurs among women. It only affects the extremities.
Because an accumulation of fluid in the tissue was assumed in the past, the disease was referred to as an oedema. According to the latest findings, with pure cases of lipoedema there is no swelling due to fluid collecting in the tissue.
Abnormal fat distribution
The disproportionality – that is, the uneven distribution – of lipoedema always occurs symmetrically on both legs or both arms. The torso, head and throat are not affected. The increase in fat can be distributed evenly across the thigh and calf (known as "column leg") or the upper and lower arms, or it may only affect the thigh or calf. Lipoedema that extends over the thigh and hip area is also referred to as a “saddle bag phenomenon”. In cases of pure lipoedema, the feet and hands are never affected. For this reason, there is typically a gap in diameter – a kind of step – to the adjacent healthy region, known as “cuff” or “collar formation”. Large bulges of fat on the knee, thigh or upper arm are known as “dewlaps”.
Severity: Pain vs. Appearance
The external appearance of the extremities is not correlated with the severity of the subjective symptoms. This means that pronounced fat accumulations in some cases may be less painful than relatively slim extremities. For this reason, the classification of stages commonly used until 2023 is now only used to differentiate between external appearances – that is, morphology. The external characteristics are only of a descriptive nature. A classification into stages based on symptoms has yet to be created.
Classification into stages for morphological differentiation
Causes of lipoedema
Lipoedema almost exclusively affects women. Two significant factors are possible in this regard, namely an X chromosome disorder or a specific female hormone disorder. The triggers for this chronic condition are mainly hormonal changes in the body as can be found during puberty, during or after pregnancy or menopause. If the condition is already established, these phases may result in a worsening or upsurge of the symptoms. A hereditary disposition for lipoedema seems probable. Thus multiple female generations of a family often suffer from the condition. The exact causes of lipoedema have not yet been decisively explained by science.
The percentage of lipoedema patients in the population is unknown. Studies typically assume between 5 to 11% of all women. The condition can appear gradually. The symptoms are often not clearly identified as such and patients endure them for a long time. Furthermore, purely clinical methods of diagnosis sometimes lead to uncertainties. For this reason, lipoedema often goes undetected.
You can find more information, tips and first-hand testimonials by patients and for patients on our blog Frauensache – the initiative for lipoedema patients.
Lipoedema symptoms
The symptoms of lipoedema can occur very suddenly or intensify gradually over the course of months and years. The distinctive subjective symptoms of lipoedema are a feeling of pressure, tenderness to the touch and sudden pain as well as a feeling of heaviness. Pressure pain means that the patient experiences pain even under slight pressure. Tenderness to the touch means that even being touched is painful. Sudden pain can be felt in the tissue without warning and without any reason. In addition, there is a sometimes evident disproportionality of the body with significant fat bulges in some cases.
You can use the following signs to identify whether you potentially suffer from lipoedema.
Symptoms that are visible on the outside
Symptoms that are visible on the outside
There are certain signs that make it very easy to spot lipoedema from its appearance:
- Both legs and/or arms are of disproportionate size, feet and hands are slim and not affected by lipoedema.
- The body looks as if it is put together the wrong way. The upper body is relatively slender, but legs, buttocks, hips and/or arms are significantly more voluminous.
- Clothing sizes for upper and lower body differ significantly.
- Exercise, healthy eating or diets make little difference to the affected parts; this will result no or only a slight decrease in circumference.
Internally experienced symptoms
Internally experienced symptoms
In addition to the visible signs, there are also lipoedema symptoms that can be felt. These can be aggravated after sitting, standing, walking or throughout the course of the day, but are also worsened by heat:
- Extreme sensitivity of the tissues
- Tenderness
- Sharp (sudden) pain
- Feeling of heaviness in legs or arms
Not all of these subjective symptoms “have to” occur for every lipoedema patient. If you notice one or more of the following signs, please consult a medical specialist. Appropriate specialist fields in this regard are lymphology and phlebology. Early diagnosis is important to ensure an optimum therapy process and to reduce symptoms.
Diagnosis of lipoedema
Unfortunately, it can often take time before a lipoedema diagnosis is made, sometimes even decades. In many cases, lipoedema is incorrectly mistaken for other diseases such as obesity, lymphoedema or lipohypertrophy, a painless fat distribution disorder.
Lipoedema is diagnosed clinically. This means that the patient is examined without the use of imaging methods. The physician relies on his or her own senses. Inspection and palpation are particularly important for the diagnosis of lipoedema. To obtain a definitive medical history, the patient responds to a systematic questionnaire. In this context, information is collected about the subjective feeling of symptoms and prior family history.
There are no measurable parameters that prove the presence of lipoedema. In order to exclude other conditions, various instrumental examinations can be applied, such as ultrasound diagnostics to rule out an oedema. Laboratory parameters can also be used for differential diagnoses, but they are equally unsuitable for demonstrating lipoedema.
For initial documentation and checking up, the biometrical values of body weight, height and circumference of waist and hips are measured. The body mass index (BMI) is not a suitable variable for lipoedema, since this overestimates the pathological fatty tissue accumulation. The ratio of waist circumference and height (waist-to-height ratio) is more useful. Additional measurements should be taken at the affected extremities for treatment planning and checking up. In order to describe the disproportionality, the lipohypertrophy quotient based on Herpertz* can be used, which also depends on the degree of obesity.
*LipQ = Circumference at the thickest point of the thigh in cm / height in cm
32-35 % = slight; 36-40 % = moderate; 41-45 % = severe; 46-51 % = massive; >52 % = gigantic
Treatment for lipoedema
After the diagnosis has been made, treatment measures are possible and necessary in order to reduce symptoms. In this process, the physician puts together a “therapy mix” specifically tailored to the patient and her symptoms. The physician can select and dose out the most suitable methods from a range of options, similar to a modular system.
Modular lipoedema therapy
Pain reduction
therapy
(intermittent
pneumatic compression)
therapy
treatment
Can be combined for the specific patient according to physician's treatment plan.
Pain reduction
Pain reduction
As lipoedema is a chronic condition, it will accompany patients all their life. Everything that relieves personal pain can and should be integrated into therapy. Pain reduction is the central goal of all measures. If a module of treatment does not demonstrate any relief, it can be abandoned.
Self-management
Self-management
Consistent treatment can positively influence the extent and potential consequences of lipoedema and alleviate symptoms. It is important that you accept yourself and your condition and start any treatment options as early as possible, consistently adhere to the treatment and become the “manager” of your condition.
Compression
Compression
One of the most important modules for pain reduction in cases of lipoedema is compression therapy. This is part of the standard course of treatment. The recommendation of the S2k Guideline on lipoedema is: “For diagnosed cases of lipoedema, compression therapy should be used for pain reduction at the affected extremities.”
Mode of action: Medical compression stockings and compression bandages are made of elastic materials. They exert a continuous defined pressure on the tissue. This constant pressure can reduce the subjective symptoms. It is important for all patients to know that compression is not suitable for reducing the pathological fatty tissue itself.
Compression products
At the beginning of compression therapy, a choice can be made between medical compression stockings, compression bandages and an adjustable compression wrap (ACW). For long-term treatment, mainly custom-made medical compression stockings with flat knit are used. This type of knit means that first a flat piece of knit is created row for row. Flat knit only takes on its three-dimensional shape when knitted together. This makes it possible to produce an individual customised garment for each patient. Lipoedema patients are generally supplied with flat knit stockings, pantyhose, leggings, sleeves, boleros or multi-piece compression garments. Which material to choose and whether a one-piece or multi-piece garment is suitable should be discussed closely between patient and physician, therapist and specialist retailer. This helps to improve compliance with jointly set goals of therapy as well as effectiveness. Flat knit medical compression stockings generally have higher stiffness and flexural rigidity than circular knit medical compression stockings. Their flexural rigidity is able to better pass over deep tissue folds without causing constriction by “slipping in”. This is particularly important for the treatment of pronounced lipoedema with large circumferences as well as concomitant obesity.
Based on the medical report, in cases with only minor symptoms and relatively slim extremities without an increase or with only a minor increase in circumference, circular knit garments are also suitable.
When selecting and prescribing compression materials, the compression class and material must be determined individually and adapted to the clinical report, symptoms and possible changes. This is because the effect of the garment depends both on the pressure and on the material properties.
Regular skin care is important for proper compression therapy.
For daily use and on the long term, custom-made flat knit garments with Juzo Expert and Juzo Expert Strong are recommended. In some cases, an adjustable compression wrap (ACW) may also be used, which can be adjusted individually and continuously.
Nutrition and weight management
Nutrition and weight management
Neither diets nor fasting will bring the desired success for lipoedema as a fat reduction in the areas affected by lipoedema will not be achieved. However, lipoedema patients can reduce the “healthy” fat. The pathological cells remain. The torso may become slimmer in the event of weight loss, but the affected extremities remain voluminous in proportion. Nevertheless, healthy nutrition in general and an active lifestyle should be maintained to avoid weight gain or even obesity. This is because excess weight has a negative impact on lipoedema. When lipoedema patients pay close attention to their nutrition and weight, they can maintain or recover their mobility and functionality and potentially prevent the illness from progressing. As a rule, short-term diets are not recommended; instead, a permanent shift in eating habits is preferable. A Mediterranean diet is recommended for lipoedema, as is a ketogenic diet.
Psychosocial therapy
Psychosocial therapy
Lipoedema patients are significantly more likely to suffer from mental, emotional and social disorders compared to women without lipoedema. When diagnosing lipoedema-related pain, the psychosocial factors should also be considered. This is because psychological problems can influence the symptoms and quality of life for lipoedema patients and should be kept in mind during diagnosis and treatment. The causes for psychological strain can be owing to the external appearance as well as chronic pain. An interdisciplinary approach is advisable here in order to treat depression, anxiety, eating disorders etc.
Physical therapy
Physical therapy
Manual lymphatic drainage
Apart from compression therapy, lipoedema is generally treated with manual lymphatic drainage (MLD). This may seem contradictory, since pure lipoedema does not involve any lymph congestion that needs to be drained. However, manual lymphatic drainage in this case is not targeting a volume reduction, but rather the modulation of the C fibres that are responsible for the perception of pain. Pain tolerance and thresholds can be increased using MLD. In combination with additional therapy methods, MLD can contribute to improving quality of life.
IPC
As a supplement to medical compression stockings and manual lymphatic drainage, intermittent pneumatic compression (IPC) can be applied – e.g. using a lymph drainage machine. An air-filled sleeve with multiple chambers exerts pressure on the area of the body being treated.This is generated at definable intervals and can be regulated. First the pressure builds up in the chamber furthest from the heart. This is always followed by the nearest chamber.For pure lipoedema, IPC can be used to reduce pain, even as a home treatment.
Sport
Movement in compression can reduce physical and psychological symptoms. Training with low strain, stretching exercises and moderate strength training are suitable. Water aerobics can have a positive influence not only on lipoedema pain, but also on concomitant conditions such as obesity, lymphoedema or joint wear.
Vibration plate
The use of a vibration plate can increase the pressure pain threshold.
Treatment with medication is generally not effective
Treatment with medication is generally not effective
Lipoedema cannot be cured by medication. Diuretics should not be used for the treatment of lipoedema. At the start of treatment or if symptoms worsen considerably, medical pain treatment may be considered, however this is generally not effective for lipoedema.
Surgical methods: Liposuction
Surgical methods: Liposuction
For some patients, surgical intervention may also be considered. Liposuction – that is, fat removal – permanently reduces the affected subcutaneous fat tissue. This can reduce pain on the long term or even get rid of it, but is not a cure and represents a significant and painful intervention in which the entire area affected by lipoedema is operated on. For this reason, it is necessary to decide in each individual case whether to adopt non-surgical treatment or whether surgery and potential undesirable side effects such as scarring of tissue are reasonable and beneficial.
The following aspects must be considered before a surgical operation in cases of lipoedema:
- Documented pain without improvement despite non-surgical therapy
- Existence of complications such as restrictions of mobility, secondary conditions of the skin or joints
- Ideally waist-height ratio (WtHR) < 0.55
- Preliminary treatment of existing obesity
- Decongestion of any other existing oedemas before surgery
- Ideally only from the age of 18 on
Defining the indications for liposuction is no longer oriented on the conventional classification into stages, since there is no correlation between the severity of symptoms and the previous stages.
Carrying out liposuction
Whether lipoedema operations are outpatient or inpatient generally depends on the extent of the condition, any concomitant conditions as well as sedation. Suction should be carried out using a method that is gentle on the tissue and lymph vessels. Here, power-assisted (PAL) and water-assisted (WAL) systems are used with local tumescent anaesthesia or general anaesthesia. In 1 to 4 sessions for both legs or 1 to 2 sessions for both arms, at most 10% of the body weight is suctioned off per operation (aspiration volume).
After liposuction
Immediately after liposuction, complex manual decongestive therapy (CDT) should be carried out. Depending on the symptoms, the patients continue to receive non-surgical therapy. The focus is then on mobility, weight stability and stress regulation.
If liposuction is being considered, it is essential that you consult one or more medical experts to find out about the possibilities, risks and side effects as well as expected costs and long-term results. It is rare that health insurers bear the cost for the liposuction. They do however pay for conservative therapy with compression garments in most cases.
Stationary rehabilitation
Stationary rehabilitation
Stationary rehabilitation is also an option with lipoedema. This is carried out in specialist lymphology clinics and offers affected patients an intensive and comprehensive treatment option. Here the focus is on a holistic consideration of the condition to address the patient’s needs individually. Rehab includes physical therapy and compression therapy as well as nutrition counselling and psychological support. The goal is to reduce symptoms, improve self-management and increase the patient’s quality of life. Speaking with other patients and engaging in joint therapy sessions help in this process. Stationary rehab can help patients to deal better with their lipoedema during daily life on the long term.
What concomitant and secondary diseases are typical?
Due to these comorbidities and complications, lipoedema patients should also consult specialists from the fields of nutrition, lymphology, orthopaedics, dermatology and phlebology as needed.
Obesity
Obesity
Lipoedema is not caused by obesity or vice versa. However, roughly 80% of lipoedema patients are obese. Nevertheless, this concomitant obesity is proportional, meaning it affects the torso.
Obesity-related lymphoedema
Obesity-related lymphoedema
Particularly in advanced stages of lipoedema, obesity-related lymphoedema can frequently occur. In these cases, a lymph drainage disorder occurs due to the extreme restriction of the lymph vessels by heavily proliferating fatty tissue. Lymph can no longer drain sufficiently and accumulates in the tissues. Obesity-related lymphoedema generally develops symmetrically, in contrast to hereditary lymphoedema for example.
Orthopaedic consequences
Orthopaedic consequences
Volume increases in the inner thighs can result in severe reduction of mobility and negatively affect the gait pattern. This can lead to misalignments in the area of the ankle, knee and hip joints.
Skin problems
Skin problems
Due to the increase in circumference on the legs and arms, constant rubbing of the skin is possible. This results in inflammation. In the skin folds caused by fat flaps, moisture and chafing may occur along with infections involving bacteria or fungi. For this reason, regular skin care is very important for lipoedema patients.
Damage to the venous system
Damage to the venous system
The venous system can be impacted by existing lipoedema. Early detection of a venous dysfunction can prevent superficial varicose veins and damage to the deep vein system while also treating any existing venous conditions.
You can find information on potential venous disorders on our Venous disorders page.
Differentiation of lipoedema, lipohypertrophy, lymphoedema and obesity
Patients with a symmetrical fat distribution disorder on the legs or arms that is not painful are not suffering from lipoedema. This illness is known as lipohypertrophy and generally does not require treatment. Nevertheless, this may result in lipoedema over time. Cases of lymphoedema and obesity may also exhibit parallels with lipoedema. This overview shows how to differentiate the indications:
| Lipoedema | Lipohypertrophy | Obesity | Lymphoedema | |
|---|---|---|---|---|
| Increase in fat | +++ | +++ | +++ | (+) |
| Disproportion of extremities compared with trunk | +++ | +++ | (+) | + |
| Oedema * | Ø | Ø | (+) | +++ |
| Pressure pain | +++ | Ø | Ø | Ø |
| Symmetry | + | + | + | Ø |
* Oedema development is variable and depends on the extent of prior treatments and the stage of the disease.
This self-check is not a replacement for seeing a medical specialist. It is crucial that you consult a medical specialist to obtain a correct diagnosis.