Lipoedema

The purpose of this activity is to raise general practitioners’ awareness of lipoedema and provide the skills for a proactive, empathetic approach to its diagnosis and management. Early diagnosis and the implementation of management strategies is crucial to alleviate symptoms and improve quality of life for patients living with this progressive condition.

Lipoedema is a loose connective tissue disorder characterised by the symmetrical accumulation of painful fibrotic fat deposits in the upper and/or lower limbs. The prevalence in Australia is thought to be 11% of all females. However, as the condition is poorly recognised and underdiagnosed, the true figure may be much higher. The disorder almost exclusively affects women; recent estimates suggest the prevalence in men is 0.2% worldwide.

Although lipoedema was first recognised in the 1940s, there is still much to learn. Current understanding points to a genetic predisposition, with many women describing similar symptoms in themselves and their female relatives. Several triggers have been proposed. Although the pathogenesis is not completely understood, disease progression often occurs during periods of physical, emotional or mechanical stress (eg after surgery), and worsening symptoms are often reported at times of significant change in sex hormones, including puberty, menarche, pregnancy and menopause. The diagnosis is clinical and does not require any specific pathology testing.

Metabolic or cardiovascular disease is not seen in higher rates in lipoedema patients, even with a higher body mass index, unless there is evidence of coexisting simple obesity. While the average body mass index for a person with lipoedema is higher than in the general population, this condition presents in all body shapes and sizes. It is not uncommon for women with a low body mass index and concurrent lipoedema to have their concerns dismissed due to a lack of awareness of the variable presentations of this condition.

Lipoedema is associated with an increased incidence of thyroid disease and polycystic ovarian syndrome, and disproportionately higher levels of depression, anxiety, eating disorders, discrimination in the workplace, social isolation and loneliness than the general population. These impacts are seen even more acutely in people with Stage 3 and 4 lipoedema than with Stage 1 and 2.

Despite this increased risk, people with later-stage lipoedema are less inclined to seek additional psychological support – part of an overall picture of healthcare avoidance due to the compounding effects of negative experiences.

In an anonymous survey, approximately one-third of patients with lipoedema reported that their general practitioners dismissed their diagnosis as a fabricated condition, and almost 60% reported negative experiences with their general practitioners due to their weight and concurrent lipoedema.

The economic burden carried by women with this disease is significant and often impedes their ability to adequately manage their condition.

Conservative strategies, including the use of compression garments, manual lymphatic drainage, dietary modifications and medical management, can cost thousands of dollars per year. This is out of reach for many.

The estimated cost of surgical management is in the tens of thousands of dollars. As surgery to manage lipoedema is currently considered ‘cosmetic’ under Medicare, there is no provision for coverage. Although lipoedema was granted an International Classification of Diseases 11th Revision code in 2022 (EF02.2), no Medicare Benefits Schedule item number exists at this time.

Given the life-changing impact this disease has on some women, they may choose to request access to their superannuation (if they have any) to cover part of the cost of these procedures. Although this may provide symptom relief, it has long-lasting negative financial implications. When considered in the context of women’s financial disadvantage, and reduced work due to symptoms, the socioeconomic impacts of managing this condition can be devastating.

Lipoedema is progressive, incurable and resistant to conventional lifestyle modifications. However, there are many management strategies available that can alleviate symptoms and improve quality of life, while limiting the rate of progression for some women.

Early diagnosis and implementation of management is crucial. The effects of underdiagnosis and misdiagnosis can be devastating, with many women left grappling with the mental, physical, emotional and socioeconomic impacts of this disease.

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Learning outcomes

At the end of this module, you will be able to:

• describe the signs and symptoms of lipoedema and lipolymphoedema
• differentiate between the stages and types of lipoedema
• outline the mental, emotional and socioeconomic impact of lipoedema
• prepare a conservative management plan for lipoedema with referral for surgical management where appropriate
• investigate and treat common comorbidities of lipoedema and lipolymphoedema
• discuss medication choices for the reduction of inflammation, fibrosis, swelling and pain.

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Case studies

Below is a list of the case studies found in this month's unit of check. To see how these case studies unfold and gain valuable insights into this month's topic, log into gplearning to complete the course.

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