What is lipoedema?

Lipoedema is a chronic condition that manifests in the body as excessive fat buildup, primarily deposited in the legs, hips, buttocks, and sometimes in the arms.¹ Despite being described by healthcare professionals for years, lipedema was recognised as a medical condition by the WHO International Classification of Diseases in 2019.² Its delayed distinction as a disease has led to years of the condition being misdiagnosed and misunderstood by both the medical community and the public. It is often confused with obesity or lymphoedema; however, examining the underlying mechanisms allows for a clear distinction between the conditions.³ This article will explore what lipoedema is and debunk common myths and misconceptions surrounding the condition.

Understanding lipoedema: the underlying science

Lipoedema is believed to have a genetic basis; however, its precise cause has yet to be identified.⁴ Fat cells, called adipocytes, accumulate and expand abnormally in the subcutaneous (under the skin) tissue of the legs, particularly in the hips. 

The presence of lipoedema is commonly reported in familial clusters, which suggests that it is also a hereditary condition. Research suggests that the condition follows an autosomal dominant pattern of inheritance.⁴ With this inheritance pattern, a single mutated gene of any parent is enough to carry the condition to the offspring, regardless of their sex, giving each offspring a 50% chance of inheriting.

Lipoedema is also considered to be influenced by hormones, as periods of hormonal fluctuations are often followed by symptom onset or disease progression.⁵ Additionally, persistent inflammation of the adipose tissue (the tissue responsible for storing fat for energy) has been shown to contribute to swelling and pain, further progressing the disease.¹ Lastly, lymphatic dysfunction due to tissue stiffness and fibrosis is usually caused by lipoedema.⁵

Lipoedema symptoms

Symptoms of lipoedema include:

• Symmetrical buildup of fat in the lower extremities, which is disproportionate to the rest of the body
• Pain in the affected areas 
• Persistent swelling
• Bruising very easily
• Bumpy texture of the skin
• Affected area may feel cooler than the rest of the body
• Mobility issues

Stages of lipoedema

Stage I: Smooth-looking skin. When examined through touch, small bumps may be detected under the skin. 

Stage II: Skin may appear like the skin of an orange. Bumps are usually larger, varying in size.

Stage III: Skin is noticeably irregular in texture. Bumps are harder and larger than in previous stages. Limbs may appear deformed from fat accumulation. 

Stage IV: Skin is considerably deformed from fat buildup, typically focused on the legs. This stage is often accompanied by lymphoedema, a tissue swelling condition that further exacerbates the existing complications.⁶

Debunking the myths and misconceptions

Myth 1: lipoedema is just obesity

Truth

Lipoedema may sometimes resemble obesity, as they are both characterised by excess fat buildup and may look similar in the way they present on the body.³ At further inspection, the two conditions are different in the way they manifest on the body, as well as their molecular basis.⁴

Some key differentiation factors include: 

Myth 2: Only people assigned female at birth can get lipoedema

Truth

Lipoedema is primarily observed in people assigned female at birth. Given that the condition has a suspected autosomal dominant inheritance pattern, one might wonder how sex plays a role in lipoedema manifestation. This observation highlights the complex dynamics of inherited disease and also the intricate biology behind lipoedema. Research shows that lipoedema is influenced by hormones, particularly oestrogen, and is therefore more commonly expressed in people assigned female at birth.⁴ The condition usually presents in periods of hormonal changes, such as puberty, pregnancy, and menopause, which suggests a strong association with high oestrogen. 

In males, lipoedema typically presents with mild to undetectable fat accumulation, which may lead to the condition going unnoticed or being misdiagnosed as obesity.⁷ Despite carrying the gene that is linked to lipoedema, people assigned male at birth may partially express the condition, or not express it at all, for the following reasons:

• Lower levels of oestrogen in the body
• Incomplete penetrance (the ability to not express symptoms of a mutated gene even though you carry it)
• Variable expressivity (the range of severity of the symptoms of a mutated gene in the person)

As a simple analogy, sex-limited expression of lipoedema can be compared to male-pattern baldness. This condition is inherited in the same way as lipoedema, but is heavily influenced by hormones and other complex biological factors. 

Myth 3: Diet and exercise can offer an easy treatment option for lipoedema 

Truth

Unfortunately, there is no defined cure for lipoedema. The fat found in patients is biologically resistant to exercise and diet, making it a complicated condition to treat.⁴

Contrary to common metabolic conditions like obesity or type 2 diabetes (T2D), lipoedema is resistant to lifestyle changes for the following reasons:

Different fat cell composition

In lipoedema, adipocytes are enlarged (hypertrophic) and in abnormal populations (hyperplastic) compared to normal fat cells. 

Oestrogen-influenced fat storage

High levels of oestrogen promote fat buildup, making diet and exercise ineffective due to hormonal influence. 

Chronic inflammation and fibrosis

Ongoing irritation caused by lipoedema attracts immune cells to the affected area, which in turn releases chemicals that deregulate the normal fat metabolism. As a result, the affected tissue may become fibrotic and stiff and ‘lock’ the fat in the tissue.⁸

This myth further highlights how the distinction between lipoedema and conditions such as obesity is crucial. Misconceptions about treatment options can lead to feelings of helplessness in individuals with lipoedema, and coming to terms with the complexity of the condition through a correct diagnosis can significantly relieve frustration. 

Myth 4: Lipoedema is similar to and always progresses to lymphoedema

Truth

Lipoedema and lymphoedema are conditions that affect the body similarly, specifically swelling of the legs. Their slightly similar outlook, as well as reports of stage IV lipoedema leading to the development of lymphoedema, have caused a misconception that the two are identical conditions.³

However, the two conditions are vastly different. Lipoedema is a condition affecting fat storage and distribution, while lymphoedema is caused by lymphatic system dysfunction, particularly failed lymphatic drainage.⁹ As a result, it promotes lymph fluid buildup, leading to swelling, limb heaviness, and overall discomfort. Additionally, it primarily causes swelling on one side of the body, without the distinct lipoedema ‘bumpy’ texture. 

In progressed lipoedema, lymphoedema may occur due to the fat and fibrotic tissue restricting lymphatic flow. This condition is indicated as secondary lymphoedema or lipo-lymphoedema. Although some cases have shown a clinical overlap, it is essential to distinguish how lipoedema does not promote lymphoedema, and the progression to lipo-lymphoedema is not guaranteed. 

Myth 5: Lipoedema cannot be managed

Truth

While researchers have not identified a single cure for lipoedema, that doesn’t mean that the condition can’t be managed. There are several changes you can implement in your everyday life, which can make lipoedema progression slower, manage symptoms and improve overall quality of life.⁴

Non-surgical approaches include:

Compression garments

Socks, leggings, and sleeves that provide compression to the affected area are proven to reduce pain and swelling, while also stimulating lymphatic flow.

Lymphatic Massages

A Specialised gentle massaging technique that promotes lymphatic flow and alleviates discomfort and swelling.

Low-impact exercise

Activities like yoga, swimming, and walking can help keep muscles and joints strong in order to combat excess topical weight. Improved mobility and lymphatic function from exercise are also beneficial.

Anti-inflammatory diet

Whole foods and healthy fats help maintain a manageable weight for distressed joints while also combating water retention and inflammation. 

Surgical approaches to combating lipoedema involve liposuction, where fat is directly removed from the affected area. 

Myth 6: Liposuction for lipoedema is only for cosmetic purposes

Truth

Liposuction for lipoedema and liposuction for cosmetic concerns are different surgical procedures that should be distinguished. Liposuction generally involves the removal of excess fat from the body without accounting for lymphatic protection. For lipoedema cases, a special type of liposuction is performed- lymph-sparing liposuction.⁴ This method prioritises the integrity of lymphatic vessels, which are highly important for lipoedema patients as discussed above. 

There are two types of lymph-sparing liposuction:¹⁰

Tumescent liposuction: A tumescent solution is injected into the lipoedema-affected tissue. This solution causes the fat cells to swell and be easier to locate while also constricting blood flow to ensure correct fat removal and avoid excess bleeding. 

Water-Assisted liposuction: A stream of water is utilised to gently dislodge and ‘flush’ excess fat from the affected tissue while also causing minimal disruption.

Addressing cosmetic concerns when suffering from lipoedema should not be disregarded, given that the condition can affect your body in ways that you don’t have control over. However, liposuction can be life-changing for lipoedema, especially in progressive cases, as the direct removal of the accumulated fat will relieve symptoms of swelling and mobility constraints. The procedure may require repetition; however, it provides a highly effective treatment option for a very complicated condition.

Summary

Lipoedema is a misunderstood condition that affects the body by depositing excess fat in the leg area. The delayed recognition of lipoedema as a distinct medical condition and its association with common metabolic disorders has led to several myths and misconceptions that undermine the difficulty of living with lipoedema. Individuals affected by the condition may feel frustrated and judged for their efforts to manage symptoms or even blame their habits for the disease progression. This article debunks the common myths surrounding lipoedema to raise awareness for the actual causes and management options for the condition.