Elephantiasis or lipedema? Prejudices and misdiagnoses

A chronic illness can be an enormous burden for those affected – especially if there is uncertainty as to which illness is actually present. Many women suffering from lipedema, for example, are confronted with misdiagnoses. In addition to ‘normal’ obesity, there is frequent confusion with elephantiasis, a severe form of lymphoedema. Both diseases are accompanied by noticeable swelling of the limbs. However, despite outward similarities, the two conditions are fundamentally different – both in terms of their cause and their progression.

An incorrect diagnosis can therefore not only fuel unnecessary anxiety, but also delay early, effective treatment. In the following, we would therefore like to clarify the differences between elephantiasis and lipedema and help you as a sufferer to find the right treatment for you.

Lipedema explained in brief: causes, symptoms and stages

Lipedema is a chronic fat distribution disorder that almost exclusively affects women. It is characterised by symmetrical accumulations of fat on the legs, arms or buttocks, which are often painful and cannot be reduced despite exercise and diet. Those affected also complain of sensitivity to pressure, a tendency to haematomas and a feeling of heavy legs. The disease progresses in stages. In the early stages, it is often not recognisable to the untrained eye or is mistaken for obesity, but can already lead to pain and discomfort. In the later stages, it usually leads to considerable deformities, severe discomfort and restricted mobility. Early diagnosis and treatment is therefore extremely important in order to slow down the progression of the disease and improve the patient’s quality of life.
A detailed explanation of lipedema, possible causes, symptoms and diagnosis as well as a detailed description of stage 1, stage 2 and stage 3 can be found on our website.

At LIPOCURA®, we have also developed a self-test that you can use to gain an initial insight into whether you might have lipedema. The result of the test can be used in a diagnostic consultation with a specialist.

To the self test

Elephantiasis – the third stage of lymphoedema

In contrast to lipedema, which exists over several stages, elephantiasis is the final stage of another disease: lymphoedema. This is a disorder of the lymphatic system that leads to a pronounced accumulation of fluid in the tissue. Causes can include congenital malformations of the lymphatic vessels (primary lymphoedema) or damage caused by injuries, infections or other diseases (secondary lymphoedema).

Lymphoedema develops in three stages:

Lymphoedema stage 1: Mild swelling during the day, which subsides with elevation.

Lymphoedema stage 2: Hardened tissue with a visible increase in volume, which no longer disappears completely.

Lymphoedema stage 3 (elephantiasis): Massive swelling and increase in volume, skin changes, possible inflammation and significant movement restrictions.

Lipedema and elephantiasis in comparison

Many patients who suffer from a pathological increase in volume of the extremities often have a long ordeal behind them, characterised by misdiagnoses and a lack of understanding. It is not uncommon for them to receive statements from their environment or even from medical staff such as: ‘Just do more sport’ or ‘It’s just being overweight’. Such comments are deeply hurtful and can lead to those affected withdrawing, blaming themselves and wasting valuable time until they receive a correct diagnosis.
The visual similarities between lipedema and elephantiasis cannot be dismissed at first glance: Swelling, an altered body image and the restrictions in everyday life can cause considerable distress in both lipedema and advanced lymphoedema. However, there are also crucial differences that are important for both diagnosis and treatment.

Elephantiasis as an additional disease to lipedema

Untreated lipedema can lead to further problems in the long term. In particular, the increasing strain on the lymphatic system can also lead to the development of secondary lymphoedema – we then speak of lipo-lymphoedema.
In this case, increased fluid retention occurs in addition to the fat deposits. The tissue hardens increasingly and the risk of inflammation increases. Without timely treatment, lipo-lymphoedema can progress to the third stage and ultimately lead to elephantiasis.

Elephantiasis: prevention and treatment

The most important measure against elephantiasis is the early diagnosis and treatment of existing lymphoedema. Early treatment can prevent further damage to the lymphatic system and prevent the disease from drastically affecting the daily lives of those affected.
The treatment of lymphoedema – even in advanced stages – is based on the concept of complex physical decongestive therapy (CDT), which includes the following measures:

Manual lymphatic drainage (MLD)

This special, medical form of massage is performed by specially trained physiotherapists and aims to transport the accumulated fluid from the tissue into healthy lymph channels. Regular sessions can reduce swelling and provide relief.

Compression therapy

Special compression garments support the reflux of lymphatic fluid. This can also significantly reduce swelling throughout the day. In conjunction with manual lymphatic drainage, compression bandages or stockings are usually applied immediately after the treatment, which are customised to the patient.

Skin care

Due to the chronic swelling and thickened tissue, the risk of infection is greatly increased with elephantiasis. The smallest injuries can quickly develop into serious inflammations. Consistent skin care with moisturising, antiseptic products is therefore recommended.

Exercise therapy

Targeted exercise can stimulate lymph flow and maintain mobility. Exercises performed with compression are particularly recommended to support the removal of lymphatic fluid. This can include water aerobics, light strength training and simple walks.

Self-management

An essential part of treating lymphoedema is educating patients about how to deal with the condition in everyday life and what they can do to prevent the symptoms from worsening (avoid heat, do not wear tight shoes, wear compression garments consistently).

In addition to Complex Physical Decongestive Therapy, surgical measures can be useful in certain cases to improve lymph drainage and alleviate symptoms. A healthy, anti-inflammatory diet can also have a positive effect.

Conclusion: Elephantiasis – the unrecognised disease

Elephantiasis is a serious disease that is often not recognised at an early stage. Due to external similarities with lipedema, there is a risk of misdiagnosis, which can cost valuable time for timely treatment.
While lipedema is primarily a fat distribution disorder, elephantiasis is the final stage of untreated lymphoedema. Differentiation is essential in order to initiate targeted therapy and prevent the progression of the disease.
A careful differential diagnosis by experienced specialists is therefore essential. If you are unsure whether you have lipedema or lymphoedema, we will be happy to help you. The LIPOCURA® team has many years of experience in the diagnosis and treatment of lipedema. We understand the challenges and uncertainties you face and would like to help you. Make an appointment at your nearest specialist centre.

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