Refresher: What clinicians should know about lipedema

Often confused with obesity or lymphedema, lipedema is poorly understood in primary care.Quebec’s National Institute of Excellence in Health and Social Services (INESSS) notes that the condition is largely “unknown to healthcare professionals.” The organization, which aims to help clinicians better recognize and manage this condition, says lipedema remains “often misdiagnosed” and “frequently confused with obesity, lymphedema, and other fat-related disorders.” To address this gap, INESSS has published a review of the current knowledge on this chronic condition, which affects almost exclusively women and manifests as localized accumulation of subcutaneous fat, mainly in the lower limbs and sometimes in the arms. Common but invisible diseaseThe actual prevalence of lipedema remains unknown, INESSS says in its literature review, adding that high-quality epidemiological studies are needed to assess it accurately. A single population-based study conducted in Brazil estimated the prevalence at 12.3% among adult women, but its results are based on self-assessment without clinical confirmation. In specialized settings, particularly vascular or lymphology clinics, the reported prevalence varies between 5% and 23%, although these figures cannot be generalized to the entire population. This statistical uncertainty fuels underdiagnosis and contributes to keeping lipedema in the blind spot of clinical practice.Often begins at pubertyThe first symptoms of lipedema generally appear during periods of hormonal change. INESSS specifies that they most often occur during puberty, but also after pregnancy or during menopause. Many women also report a family history of the condition, suggesting a genetic component that has not yet been identified. This particular timeline partly explains why the condition has long been mistakenly interpreted as simple weight gain linked to hormonal changes.Unmistakable clinical pictureLipedema manifests as a disproportionate, symmetrical, and bilateral accumulation of subcutaneous adipose tissue. The thighs are affected in 85% to 90% of women with the condition, the knees in more than 75%, and the hips in similar proportions, while the hands and feet are affected in less than 5% of cases. This contrast between enlargement of the limbs and preservation of the extremities is a key indicator for distinguishing lipedema from obesity and lymphedema.Pain, the central symptomPain is at the heart of the clinical picture of lipedema. In one study, 87% of women reported pain during movement and nearly 80% even at rest. INESSS notes that this pain tends to intensify throughout the day, during physical activity, or after long periods of standing or sitting. The thighs, calves, and knees are among the areas most frequently affected by pain, and the intensity of the pain increases with the stage and severity of the condition.Severe comorbiditiesLipedema is rarely accompanied by a single problem. A recent study conducted in Switzerland shows that 65% of affected women have one to three comorbidities and that more than a quarter have four or more. Obesity is the most common, affecting nearly 46% of patients, followed by lymphedema, chronic venous insufficiency, and several endocrine disorders such as hypothyroidism. Mental health is also significantly affected, according to INESSS, and anxiety disorders and eating disorders are common. Approximately one in three has a depressive disorder, with a direct impact on quality of life, social life and ability to work.Clinical diagnosisThere are currently no universally recognized tests or diagnostic criteria for lipedema, with diagnosis primarily being based on clinical examination and medical history, according to INESSS. A recent international consensus statement proposes three key criteria: disproportionate and symmetrical distribution of adipose tissue, increased sensitivity to touch with pinch pain, and normal hands and feet. The assessment should also include a psychosocial examination to measure the impact of the condition on quality of life. Imaging tests are not routinely required but may be useful in cases of diagnostic uncertainty or to establish a differential diagnosis.Relieving rather than curingThere is no cure for lipedema. However, a conservative approach can relieve symptoms, improve quality of life, and prevent the condition from progressing. This approach is based on compression therapy, lymphatic drainage, physical activity, a balanced diet and psychosocial support. Compression garments are the most commonly used treatment and “may reduce certain symptoms,” notes INESSS. Conversely, although lymphatic drainage is widely used, “Its effectiveness is not supported by scientific evidence,” despite positive patient testimonials.What about liposuction?Three main liposuction techniques are used in the treatment of lipedema: tumescent liposuction, water-assisted liposuction and mechanically assisted liposuction. Studies suggest a possible reduction in pain, edema, sensory symptoms, and an improvement in mobility and quality of life. However, these results are based on low-quality before-and-after studies without a control group and based on self-reported data, notes INESSS. Health Canada and the U.K’s National Institute for Health and Care Excellence do not currently recommend this procedure. Conversely, consensus statements in Germany, Brazil and Spain do. Complications are considered rare and generally benign, with rates ranging from 0%-to-5.7% per procedure.This article has been translated from its original French and first appeared on our sister site Profession Santé.

Refresher: What clinicians should know about lipedema

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