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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.

Diagram showing the stages of lipoedema

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.

Good to know

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.

Diagram lipoedema symptoms

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

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 diagram
Modular lipoedema therapy diagram

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.


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:

 LipoedemaLipohypertrophyObesityLymphoedema
Increase in fat+++++++++(+)
Disproportion of extremities compared with trunk++++++(+)+
Oedema *ØØ(+)+++
Pressure pain+++ØØØ
Symmetry+++Ø

Explanation of symbols:

+ to +++ present; (+) possible; Ø not present
* Oedema development is variable and depends on the extent of prior treatments and the stage of the disease.

Important

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.