More and more women in Germany are visiting doctors with characteristic symptoms of lipedema. Many of them are initially unfamiliar with the disease lipedema. For those affected, it is a long path of suffering to reach the right diagnosis and therapies. What severe problems do people with lipedema face in their daily lives? Here are just a few...
Many women notice an increase in fat in the legs and buttocks during puberty, while their upper body remains slim. Over time, tension, pain, and exhaustion in the legs begin to develop. These symptoms worsen throughout the day, particularly during prolonged standing or sitting, and can grow unbearable. Physical activities like sports or even office work become impossible. The symptoms are especially severe in warm temperatures or at low air pressure (such as during air travel). Elevating the legs brings no significant relief. Taking birth control pills or going through the first pregnancy can lead to more severe pain and further thickening of the legs or lower legs. Visible dimples, waves, and indentations become a constant presence. Additionally, the skin becomes saggy and may look dull.
The failure of one's own efforts to shape the body through sports and diets leads to recurring frustration, eating disorders, and depression. The disfiguring body shape, combined with severe pain, increases the risk of severe psychological stress or mental health issues. Moreover, many women face a lack of understanding from friends, relatives, or even doctors. Instead, they experience disgust, contempt, and ridicule. When a woman with thick, painful legs visits a doctor, there's a high likelihood that she will simply be told she's overweight and needs to lose weight.
The course of the disease is unpredictable and varies from person to person. However, in most cases, if left untreated or improperly treated, the disease progresses, meaning the localized fat deposits and edema increase, along with greater pressure and tension pain. Dr. Stefan Rapprich reports cases where symptoms have worsened within just a few years, resulting in an increase of an entire stage in severity.
It is common for women to be diagnosed with obesity or a different form of edema during their first medical consultations. However, these conditions have different symptoms. Because lipedema is still largely unknown, many doctors overlook or confuse it. Misdiagnoses occur because distinguishing it from differential diagnoses can be challenging, and a qualified specialist diagnosis is typically only possible from a phlebologist experienced in treating lipedema patients. In half of all cases, more than ten years pass from the onset of lipedema until a proper diagnosis is made, and in nearly a quarter of cases, it takes over 30 years. During this time, many affected women go through a real ordeal before finally receiving help.
Due to misdiagnoses, patients often receive incorrect or incomplete information and treatment instructions from doctors. Incorrect diagnoses and recommendations can have disastrous consequences. When treatment recommendations for overweight patients are given, the disproportion between the limbs and torso becomes more pronounced with weight loss, while the symptoms of lipedema persist. Decongestive therapies are only effective when edema is present, which is often not the case in the early stages of the disease – despite the unfortunate name "lipedema." As a result, compression stockings or lymphatic drainage are often prescribed for lipedema patients without documented edema. This only increases their suffering, further deteriorating their mental well-being.
Knock-knees or the aforementioned psychological conditions are not uncommon. The disproportionate fat accumulation in the legs alters one's gait, leading to joint misalignment and damage. Severe pain responses result in restricted movement, which negatively affects the entire body. This can lead to obesity, which in turn worsens the symptoms, trapping the person in a vicious cycle.
The goal of treating patients with lipedema is to alleviate symptoms. Complex physical decongestive therapy is often used in practice. For such conservative treatment to be successful, a lipedema diagnosis with documented edema and consistent long-term therapy is essential. Patients not only need to invest a significant amount of time in lifelong conservative therapies, but they also face enormous costs.
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