It’s hard to get a lipoedema diagnosis: Why is that?

by | Jul 23, 2020

Lipoedema is a chronic, incurable disease that can have a significant impact on patients’ wellbeing, both physically and psychologically. In fact, some people can be so severely restricted by the condition that they eventually become homebound.

Despite the seriousness of this disease, Australian lipoedema sufferers face significant challenges even getting recognition. Not only is awareness amongst medical practitioners poor but there is also little research on the disease. As a result, many people with lipoedema are misdiagnosed by healthcare professionals. As it stands, there are no Australian guidelines on the management of the disease, leading to inconsistent and frequently inappropriate care for people with the condition.

What is lipoedema?

First described in 1940, Lipoedema literally means ‘fat swelling’ and refers to a chronic body fat disorder involving the incurable build-up of fatty tissue. It is mainly found in women around the thighs, buttocks and lower legs and is sometimes associated with significant tissue enlargement, oedema (swelling), and varying levels of pain.

What are the symptoms of lipoedema?

Symptoms vary from patient to patient. Some of the more common ones include:

• Excessive accumulation of fatty tissue, particularly in the lower legs and thighs but also the buttocks, lower legs, and ankles (cankles).
• Bruising easily or without apparent cause.
• Pain and extreme sensitivity or tenderness in affected areas.
• Muscle weakness.
• Coldness in affected areas.
• Restricted mobility.
• Weight-loss is only effective in areas unaffected by lipoedema.

What causes lipoedema?

While the exact causes of lipoedema are unknown, it is likely multiple factors are involved:

  • The condition tends to first present itself during puberty although it has also been known to occur after oral contraceptive use, pregnancy, and menopause. This indicates it may be hormone-related.
  • There is also evidence that the disease may be genetic, with a family history of the condition found in 15 to 64 percent of patients.
  • Lastly, there have been reports of the onset of the disease following significant weight gain.

More research is needed to get a better idea of the mechanisms causing the disease.

Why is it often missed or misdiagnosed?

Awareness and understanding of lipoedema among medical professionals is limited. As there are no known blood or urine biomarkers or specific tests for the condition, a diagnosis depends on the history and examination of the patient. This becomes problematic when medical professionals do not recognise the disease, particularly in the early stages or when a patient has co-existing obesity.

Likewise, part of the reason that lipoedema may be underdiagnosed is that it may be mistaken for other conditions that cause tissue enlargement, swelling, or fat deposition. The two most frequent misdiagnoses are generalised obesity and lymphoedema, which results from a malfunction of the lymphatic system. Making matters even more confusing, patients with lipoedema may develop lymphatic dysfunction, a combination referred to as lipolymphoedema.

Clinical examination

Due to the lack of diagnostic tests for the condition, the main purpose of clinical investigations is to exclude other diagnoses. A range of routine blood tests is often useful in excluding or identifying other conditions, especially if weight gain and lethargy are present. Other tools used to diagnose lipoedema include MRI scans and tomography scans. Ultrasound measurement of dermal thickness may help to differentiate lymphoedema and lipoedema.

Once diagnosed, what treatment is available?

As lipoedema is resistant to diet and exercise, tumescent liposuction is often used to treat the symptoms. Before this can be done, a detailed ultrasound examination of the blood vessels in the lower legs needs to be conducted to rule out or treat any underlying venous disease. After that, direct treatment of lipoedema can begin.

Compared to regular/manual liposuction, tumescent liposuction is less painful and has a quicker recovery time. This is performed on an outpatient basis and requires no general anaesthetic, allowing you to get back to your daily life as soon as possible.

Key takeaways

  • Lipoedema is a chronic body fat disorder involving the build-up of fatty tissue, particularly around the thighs, buttocks and lower legs.
  • Awareness and understanding of lipoedema among medical professionals is limited so it is often missed or misdiagnosed.
  • Once diagnosed, tumescent liposuction is the best treatment for the symptoms of the condition, as diet and exercise are ineffective.
  • Book your appointment with the fully accredited Sculpture Clinic (part of Paras Clinic) today!

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