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Excess fat and weight gain that concentrates on the lower body, buttocks, thighs, and legs may not have anything to do with your diet or how much you exercise. In fact, a growing body of research indicates that millions of individuals, mostly women, are actually victims of lipedema. With lipedema, the distribution of fat in the body is dysfunctional and will not respond effectively to lifestyle changes.
Women who have disproportionately large hips and legs maybe surprised to learn that the shape of their body may be the result of a condition called lipedema. In the past, fat buildup on the lower body was often attributed to obesity. However, it’s become clear that there many people, especially women, who actually have this fat disorder.
Fat deposits that have built up around the hips, legs and lower body may an indication of lipedema. If you’ve experienced weight loss in other areas of the body, namely the upper body, but have yet to see any improvement in the lower body, you may have lipedema.
Lipedema, sometimes called a “painful fat syndrome,” is a condition that disproportionately affects women, showing in as many as 17 million women in the United States. Lipedema also appears in men, but these cases involve hormonal imbalance or liver disease. Lipedema is progressive, meaning the condition’s symptoms show over the long term, developing and worsening in severity over a span of years.
Lipedema is a fat disorder that can significantly impact a sufferer’s quality of life with symptoms of physical pain and emotional trauma. Lipedema is difficult to catch in its early stages where it is often misdiagnosed as obesity. Attempting to address lipedema with weight-loss and improvements in healthy living have only shown to offer limited improvement against lipedema progression. Moreover, research shows that lipedemic fat is notoriously difficult to reduce through exercise and even extreme dieting. If left undiagnosed and untreated, lipedema patients can experience drastic malformations in their figure and disproportionate weight gain that concentrates on the lower extremities.
Of the millions of women who have lipedema, many are unaware of it or have been diagnosed with obesity.
Lipedema Symptoms, Diagnoses and Presentation
Individuals with lipedema may not become aware of their condition until much later in life, although diagnosable signs can begin to show as early puberty. A leaner upper body and heavy-set lower body with large, trunk-like legs is a hallmark presentation of lipedema. Weight gain appears to concentrate below the bones of the waist, known as the iliac crest. The ankles and feet remain proportionate but may experience swelling. Weight gain is vertically disproportionate towards the lower body but is evenly distributed horizontally.
Lipedema is nicknamed the “painful fat syndrome,” due to pain and tenderness that often occurs.
Lipedema is thought to be the result of hypertrophied fat cells. The hypertrophied fat cells are cells that have become very large, which also results in the concentration of acids already found in the body. The increased concentration of acids causes the hypertrophied fat cells to stiffen and attract inflammatory white blood cells. The inflammation and swelling damage blood vessels and strains the local lymphatic vessels, which explains the bruising and tenderness commonly experienced by lipedema patients. The body’s natural healing response attempts to repair inflammation and damaged fat cells, introducing scar tissue that traps fat lobules and excess water.
The inflammatory response, healing reaction, and scarring become a feedback loop leading to lipedema progression.
Lipedema progresses in stages, categorized as Stage 1, Stage 2, and Stage 3. The majority of lipedema patients reach stages 1 and 2, with a small percentage reaching stage 3.
With the earliest stage of lipedema, the appearance of fat distribution is relatively normal. Excessive fat padding above the knees and ankles may distort their natural shape but can be difficult to detect. Fat will be painful to the touch and does not respond to over-the-counter medication. Lipedemic fat at this stage is vulnerable to bruising and infections like cellulitis compared to fat on other parts of the body.
If left unchecked, lipedema progresses to stage 2 where skin texture becomes visibly uneven and discolored. Large, golf-ball sized lumps begin to form and collect and fatty pockets become more pronounced and noticeable to the touch.
The third stage is the most advanced form of lipedema, also known as lipo-lymphedema. At this stage, the skin has become thick, hardened and uneven. In some cases, symptoms have spread to the upper body and arms. The natural contour of the lower body is deformed to the degree where movement may be impaired. Large lumps of fat are unevenly distributed, creating a misshapen figure.
The diagnosis of lipedema is inconsistent and poorly regulated by the medical community. Only in recent years have significant strides been made to educate and standardize the understanding of lipedema. Unfortunately for many individuals, the lack of education about lipedema has led to poor diagnosis and stigma because they are simply blamed for their inability to lose weight.
The causes of lipedema are still being researched, but there is a known link to hormonal imbalances and genetics. Mothers can pass the condition on to their daughters and even though the condition mainly presents in females, males can be carriers. The appearance of lipedema is commonly associated with puberty, pregnancy, menopause or gynecological surgery, pointing to a strong correlation between lipedema and hormonal imbalances.
The prevalence of lipedema in women has been linked to gynoid fat, which is a type of fat involved with pregnancy and important for child development. A characteristic of gynoid fat is that it effectively processes fat and sugar after meals, preventing fatty plaque buildup in blood vessels and protects against diabetes. In women, gynoid fat levels increase after puberty and concentrate under the abdomen, on the buttocks, along with the hips and thighs. The feminine figure is typically attributed to gynoid fat layers. Gynoid fat does not respond to dieting and exercise and may be linked to the lipedema.
Research indicates family history as a strong indicator for lipedema with about 15% of lipedema patients having a family who also has the condition.
Lipedema’s progressive nature is likely caused by a cycle of excess fluid accumulation and fat cell dysfunction. Fat cells are designed to maintain a fluid balance, which is managed by the venous and lymphatic system that removes excess fluid. Lipedema patients are known to have fragile lymphatic vessels, resulting in fluid build up. Gravity puts the lower half of the body under disproportionate amounts of strain to manage fluid balance. The fluid builds up then triggers additional fat concentration as fat cells grow due to poor fluid drainage.
Reports from lipedema patients who have undergone extreme calorie restriction have reported little improvement of symptoms. This experience is frustratingly common for many lipedema patients before they receive an accurate diagnosis.
In early stages of lipedema, diet and exercise can help maintain mobility and reduce pain, but weight loss has shown to have limited effects against lipedema. Lipedema patients can become vulnerable to eating disorders as they continue to reduce their diets in an ongoing attempt to treat their symptoms. The condition has shown in individuals that are underweight as well as those who are overweight.
Lipedema management and treatment typically consists of decongestive therapy to present and reduce swelling. Compression garments and drainage massage are recommended courses of self-care.
Surgical treatments such as liposuction and belt-lipectomies (also known as body lifts) can address symptoms associated with lipedema. The most prominent feature of lipedema is the accumulation of fat on the lower half of the body. The concentration of fat on the lower limbs can severely distort an individual’s figure and ultimately interfere with movement.
A significant advantage treatment such as liposuction offer is that these are effective fat removal techniques.
Liposuction permanently removes fat cells from the body, which may limit the accumulation of fat tissue common with lipedema. A healthy diet, weight management, and exercise following a treatment can alleviate or prevent body contour distortions. Tumescent liposuction is a proven fat reduction treatment with a long track record of safety and success.
Although dieting and exercise do not directly address lipedema, lipedema patients are advised to maintain a healthy lifestyle. Additional weight gain or obesity can lead to complications with lipedema, worsening inflammation, and speeding progression.
Lipedema and Obesity
Lipedema is often associated with obesity, but the two conditions are not interchangeable. Lipedema can occur in patients at varying weights. Moreover, treatments for obesity have not been shown to be effective treatments for lipedema. Fatty tissue in obese patients presents a different texture as the lipedemic fatty tissue is tougher, tender to the touch and unsmooth. Lipedemic fat at the second and third levels often develops into fist-sized lobules due to fluid concentration and inflammation. Obesity can often be addressed with lifestyle adjustments where lipedema treatment requires closer attention.