Overview 

Lipedema (lip-eh-dee-muh) is a condition that causes abnormal fat deposits to build up in certain areas of your body.¹ Lipedema, obesity and lymphedema are often confused with each other; however, they have different causes and different treatment methods. Lipedema is characterised by the accumulation of fat on the extremities, which can often be painful. Lipedema fat often presents with palpable nodules, which helps differentiate it from the smooth feel of obesity-related fat. In addition, lipedema primarily affects women, unlike obesity and lymphedema, which also affect men, and can be triggered by hormonal events such as puberty or pregnancy. It is estimated that around 11% of women worldwide have lipedema. Clinicians need to have clear diagnostic and staging criteria, as this allows for increased clinical accuracy and informs patients' expectations, guiding treatment plans. Misdiagnosis can lead to delays in recognition, which can cause the condition to worsen over time. 

Diagnostic criteria 

Clinicians will often look at a patient's history as well as conduct a physical examination in order to diagnose lipedema. Patients with lipedema are commonly female and possibly would have found the fat deposits occurring around puberty, with the chance of it worsening around other stages of life with hormonal shifts, such as menopause. Lipedema is also believed to have a strong hereditary component,³ suggesting that if a family member has been diagnosed with lipedema, then there is a higher chance that it has been passed on. Symptoms such as pain, easy bruising, tenderness in the area, heaviness or ‘unresponsive’ fat (fat that does not seem to be impacted by weight loss measures such as calorie deficit) are often seen in lipedema.⁴ 

A physical examination of the affected regions will show bilateral fat in limbs that does not extend to the hand or feet, resulting in a cuffing effect. Varicose veins may also be present due to increased pressure on the venous system,⁵ as the increased fat compresses the superficial veins, leading to impaired venous return.‘Pea-like’ nodules of fat will often be felt underneath the skin, as well as fibrosis, which can present as dense and firm or stringy and spiderweb-like.⁴ Patients will present as stemmer negative, meaning that the skin around fingers and toes can be pinched. Lipedema is also characterised by non-pitting oedema,⁶ meaning that no indentation is left when pressure is applied to the area. There are some issues with diagnosing lipedema. This is because there is often diagnostic confusion, as well as a lack of appropriate guidance to aid doctors in treatment options.⁷ Therefore, if lipedema is suspected, one should communicate this to the doctor and advocate for exploration to diagnose. 

Clinical staging of lipedema 

Clinical staging is used to describe the progressive changes as well as the severity of lipedema over time. Clinical staging of lipedema does not take into account the functional impact of the condition but instead focuses on the morphology (appearance) of the condition.⁴ Clinical staging is split into four main stages. Stage I appears with a smooth skin surface, with nodules that can be felt underneath the skin (subdermal). Stage II appears as uneven skin with nodules and potentially fibrosis. Stage III is characterised by the appearance of large lobules as well as more visible signs such as skin overhangs. Finally, Stage IV is called Lipolymphedema, which is when both lipedema and lymphedema are present. Higher staging can often correlate with higher age, BMI or mental health issues such as anxiety or depression.⁸ It is important to note that though previously thought to be a progressive disease, lipedema is not inherently a progressive disease, as the condition can remain stable for several years, without limb volume worsening. However, Lipedema has the potential to worsen, especially with weight gain, which in turn can worsen symptoms, but this is not a guarantee. Lipedema is also more likely to worsen without management.^9,10 Most clinical sources describe lipedema as being potentially progressive and therefore encourage early diagnosis in order to aid early interventions, which can prevent progression. 

Distribution style 

Distribution styles help classify the anatomical location at which the fat is accumulated. Type I is when the fat deposits are around the hips, Type II is when fat is found from the hips to the knees, Type III starts at the hips and descends to the ankles, and Type IV is when the fat deposits are also found in the arms as well as in the lower limbs. Type V is when the fat is stored in the lower legs only and is not found elsewhere. It is important to note that distribution style is not correlated to clinical staging, and does not indicate the severity of the disease¹¹, but merely gives guidance to the location in which the fat is most prominent. 

Clinical relevance and differential diagnosis 

Lipedema needs to be diagnosed correctly, as misdiagnosis can lead to increased stigma, an increase in comorbidities, as well as delays in appropriate treatment.¹² Co-morbidities can include mobility issues, pain, depression and eating disorders, which have been known to worsen in advanced-stage patients compared to their early-stage peers.¹³ An understanding of its pathology and natural history is necessary to diagnose lipedema correctly. If misdiagnosed, this can lead to patients undergoing unnecessary dieting, which would have no profound effect. As previously stated, lipedema is often misdiagnosed as obesity or lymphedema. Whilst these can occur alongside lipedema, it is not always the cause of the fat deposits. Obesity is characterised as central fat with no pain or tenderness. It is also responsive to treatments such as dieting. Lymphedema is often asymmetric and shows with pitting (indentation is left on the skin after pressure is applied),¹⁴ as well as being positive for Stemmer’s sign. Once lipedema is properly diagnosed, various treatment plans can be implemented, such as wearing compression garments or planning for surgery. This is important as it can ease symptoms that the patient may be suffering. 

Summary 

In summary, lipedema is distinct from other conditions such as obesity and lymphedema. In order to determine the type of condition someone might have, clinical diagnosis is key. As a result, clinicians can develop a thorough understanding of the problem and how to resolve it. This is aided by staging and distribution style, which can help make treatment decisions. It is also important to take into account someone’s symptoms when determining an action plan. Increased awareness of lipedema is necessary in order to support patient care and increase accurate diagnosis. Raising awareness also helps reduce the stigma that might be attached to lipedema or associated conditions. 

FAQs

Is there a universally accepted diagnostic tool or test for lipedema? 

No, currently, there is no universally accepted tool or test that can be carried out to diagnose lipedema. The diagnosis is clinical and subjective. Imaging can be used to support the diagnosis by picturing the changes in the fat structure, but imaging is not used to make the diagnosis itself. 

What is the difference between staging and fat distribution types? 

Staging describes the progression of tissue changes, from soft fat to fibrotic fat, as well as looking at the texture of fat and the skin surface, whereas distribution types describe the anatomical location in which the lipedema fat is located. Neither accounts for symptoms such as pain, tenderness, or impact on mobility. 

Is lipedema progressive? Can it get worse? 

No, lipedema is not a progressive disease in the medical sense, as the condition can remain stable for several years. However, it can worsen over time due to a general increase in body weight and obesity. In order to prevent this, diagnosis and appropriate treatment are needed.