For a Better Life

menu

How Prevalent is Lipedema in Women?

Lipedema is a fat disorder that mainly affects women and causes enlargement of both legs due to fat deposits under the skin. It’s characterized as a “progressive disorder,” meaning it worsens over time. In severe and more progressive cases, the trunk and upper body may also be affected, including the arms and upper back, and it’s often misdiagnosed and incorrectly treated as general obesity. While the exact prevalence of lipedema is still not well-known, estimates suggest that it may affect a significant portion of the female population. Below, we explore the lipedema prevalence and its symptoms, causes, and available treatment options.

Understanding Lipedema

Lipedema is a condition that often goes undiagnosed or misdiagnosed due to its similarity to other conditions, such as obesity and lymphedema. It typically begins during or after puberty, pregnancy, or menopause, suggesting a hormonal influence on its development. Lipedema is characterized by an irregular distribution of fat beneath the skin, causing the affected areas to become larger than other body parts. The condition primarily affects the legs but can also involve the arms in some cases. Unlike obesity, lipedema does not respond to traditional weight loss methods, making it distinct from lifestyle-induced weight gain. Additionally, lipedema is different from lymphedema as it does not start in the lower legs but rather affects the upper legs.

Lipedema Prevalence

Lipedema is a connective tissue disease that may affect 6-19% of women. (1, 2, 3) If these numbers are valid and applied to the US population, millions of women in the US have lipedema.

Determining the exact prevalence of lipedema has been challenging due to the lack of awareness and recognition of the condition among healthcare professionals. However, recent studies and clinical observations have shed light on its prevalence. According to estimates, lipedema may affect approximately 1 in 9 women globally. This suggests that it is more common than previously believed. However, it is essential to note that the prevalence may vary depending on geographical location and the population studied.

In one study conducted in a referral clinic in Germany, it was found that approximately 11% of women and individuals assigned female at birth had lipedema. This estimate is higher than previous studies and highlights the need for increased awareness and understanding of the condition. However, it is essential to acknowledge that lipedema can be underdiagnosed or misdiagnosed, as it often resembles other conditions.    

Recognizing the Symptoms

Lipedema is characterized by specific symptoms that differentiate it from other conditions. The most noticeable symptom is the disproportionate enlargement of the lower body, particularly the legs, hips, and buttocks. This irregular fat distribution can give the appearance of two different bodies combined, with a smaller upper body and a significantly larger lower body. The affected areas may exhibit a lumpy or nodular texture, and the skin may bruise easily. Individuals with lipedema may also experience pain, tenderness, and a heavy feeling in their legs. Other symptoms can include swelling, fatigue, and the development of spider veins or varicose veins in the legs.

It is important to note that lipedema can have a significant impact on an individual’s physical and emotional well-being. The appearance of the legs and the challenges in finding appropriately fitting clothes can lead to self-esteem issues, social isolation, and psychological distress. Therefore, early recognition and appropriate management of lipedema are crucial for improving the quality of life for affected individuals.

Causes and Risk Factors

The exact cause of lipedema is still unknown, but several factors may contribute to its development. Hormonal influences are believed to play a role, as lipedema often starts or worsens during hormonal changes such as puberty, pregnancy, and menopause. Hormonal contraceptives, such as birth control pills, may also be a contributing factor. Additionally, there is evidence to suggest a genetic component to lipedema, as it tends to run in families.

While obesity itself does not cause lipedema, there is a correlation between the two conditions. It is estimated that more than 50% of individuals with lipedema have a body mass index (BMI) higher than 35. However, it is important to note that lipedema cannot be attributed solely to excess weight, as it is a distinct medical condition with unique characteristics.

Certain risk factors may increase the likelihood of developing lipedema. Being assigned female at birth, having a family history of lipedema, and having a BMI higher than 35 are factors associated with a higher risk of developing the condition.

Diagnosing Lipedema

Diagnosing lipedema can be challenging due to its resemblance to other conditions and the lack of awareness among healthcare professionals. A thorough medical history, physical examination, and evaluation of symptoms are essential for accurate diagnosis. Painful fat deposits and the presence of a significant difference in size between unaffected feet and affected legs can be indicative of lipedema.

There is no specific diagnostic test for lipedema. Still, imaging studies, such as ultrasound, DEXA scan, magnetic resonance imaging (MRI), computed tomography (CT), or nuclear medicine imaging, may be utilized to rule out other conditions or identify any associated complications. These tests can help in differentiating lipedema from conditions such as lymphedema and assessing the extent of fat deposition.

Non-Surgical Lipedema Treatment Options

While there is no cure for lipedema, various treatment options are available to manage the symptoms and improve the quality of life for individuals with the condition. The treatment approach may vary depending on the severity of symptoms and individual needs.

Compression therapy, involving the use of compression garments or bandages, is commonly recommended to reduce swelling and provide support to the affected areas. Physical and occupational therapy, including manual lymphatic drainage therapy, can help improve mobility, reduce fluid buildup, and enhance overall well-being. Dietary changes, such as adopting an anti-inflammatory diet, may help manage symptoms and reduce the progression of lipedema. Strength and conditioning exercises, particularly low-impact activities like water exercise, can improve circulation, increase mobility, and promote overall fitness. Counseling or therapy may be beneficial for individuals with lipedema to address the psychological impact of the condition, including depression, low self-esteem, and body image concerns. Additionally, liposuction performed by specialized surgeons can be considered in select cases to remove the diseased lipedema fat and improve mobility and quality of life.

Lipedema Surgical Treatment Options

Ultimately, effective treatment will require surgical intervention to alleviate the appearance and pain of symptoms. Liposuction performed on the affected limbs is generally the most effective treatment. Removing diseased fat deposits helps reduce swelling of the limbs and alleviates the pain that holds patients back from everyday activities. This surgical treatment can provide various benefits and relieve the symptoms you are experiencing from lipedema. Dealing with lipedema can be difficult, especially if you are just now starting to take control of it. Lipedema reduction surgery is different from cosmetic liposuction. Studies have shown that women with Lipedema have impaired lymphatic function. Lymphatic fluid promotes the growth of more fat cells, which can overwhelm the lymphatic capillaries (branch-like blood vessels). Extra care must be taken to avoid injuring the lymphatic system and worsening an already stressed system. Studies have shown that lymphatic function can improve after this type of liposuction in women with Lipedema using blunt cannulas, generous tumescent anesthesia, and special surgical techniques. Lipedema reduction surgery aims to remove the fibrous tissue and maximally reduce the lipedema tissue. It is a “debulking” surgery, not a cosmetic surgery.

Seeking Professional Help

If you suspect that you may have lipedema, it is important to consult with a healthcare professional who specializes in the condition. A vascular surgeon, plastic surgeon, or dermatologist with expertise in lipedema can provide an accurate diagnosis and recommend appropriate treatment options based on your needs. Early diagnosis and management of lipedema are crucial in preventing the condition’s progression and improving overall health outcomes. By seeking professional help, individuals with lipedema can receive the care and support they need to manage their symptoms and maintain their quality of life. Lipedema is a prevalent condition that primarily affects women, causing abnormal fat buildup in the lower body. While the exact prevalence of lipedema is still uncertain, estimates suggest that a significant portion of the female population may be affected. Recognizing the symptoms, understanding the causes and risk factors, and seeking appropriate treatment are essential for managing lipedema and improving overall well-being. By increasing awareness and understanding of the condition, we can ensure that individuals with lipedema receive the care and support they deserve.

Sources

[i]     Foldi E, Foldi M. Das lipodem. In: M Foldi, E Foldi, and S Kubik, eds. Lehrbuch der

Lymphologie für Mediziner, Masseure und Physiotherapeuten. Munich: Elsevier, Urban &

Fischer;2005:443-453.

https://www.amazon.com/F%C3%B6ldis-Textbook-Lymphology-Physicians-Lymphedema/dp/0723436460

[ii]     Crescenzi R. Donahue PMC, Weakley S, Garza M, Donahue MJ, Herbst KL.

Lipedema and Dercum’s disease: a new application of bioimpedance. Lymphat Res

Biol 2019;17(6):671-679.

https://pubmed.ncbi.nlm.nih.gov/31408408/  

[iii]    Gould DJ, El-Sabawi B, Goel P, Badash I, Colletti P, Patel KM. Uncovering lymphatic

transport abnormalities in patients with primary lipedema. J Reconst

Microsurg 2020;36(2):136-141.

 https://pubmed.ncbi.nlm.nih.gov/31546262/