Lipedema: why diagnosis is difficult

It was hardest in her mid-twenties. Her upper body fit into a 36, ​​and she needed trousers five sizes larger. "I was divided into two parts: Barbie upstairs, Monchichi downstairs," says Isabel García. It started during puberty when she gained four kilos in a relatively short time. Not that much, but almost exclusively on her legs. She went on her first diet, the disproportion remained, worsened with each new weight loss attempt and subsequent yo-yo effect. However, she was never really overweight. And yet: "I was always told that it was my own fault and that I had to eat and train more disciplined," says the now 50-year-old. It was not until the late twenties that the correct diagnosis was made, following the advice of a friend who happened to know someone else and recommended a doctor: lipedema.

There is real hype about lipedema diagnosis

A lot has changed since then: The times when the disease was still largely unknown are definitely over. "There has been a real hype about it," says Dr. Tobias Bertsch, lymphologist and senior physician at the Földi Clinic in Hinterzarten. "Every day we are assigned women diagnosed with lipedema who do not have any." In the meantime, the doctor has networked with experts from ten European countries to clear up myths that have established themselves among doctors and those affected.

"It is a very complex disease," says Bertsch. Breeches syndrome, as it is often called colloquially, clearly falls short: "Women diagnosed with lipedema have a disproportionate increase in fat tissue on the legs, less often on the arms and – very importantly – pain in the soft tissue. Much more than this, however, many suffer from it their often constant weight gain. This occurs completely independently of lipedema, but can worsen the symptoms. Furthermore, the vast majority of women lack self-acceptance. "

It is unclear how many people with lipedema – almost exclusively women, often several generations of a family are affected – there are at all. Eleven percent or almost four million women are spread again and again. Bertsch thinks these numbers are clearly too high. However, there is no reliable information on frequency: "The diagnosis is based on subjective parameters, after all, there is no measure for a disproportionate proportion."

The fact that diagnosis is in vogue right now is also due to the ubiquity of slim women in the media. "The majority do not conform to this ideal of beauty," says the doctor. "The thought can quickly arise: Something is wrong with me, my legs are too fat. What used to be normal is now called lipedema." But being dissatisfied with your figure is not a disease.

"The pain sensitivity is clearly worse than the optical problem," says Isabel García. Even light touches make her uncomfortable, and she keeps getting bruises. At night she sometimes doesn't know how to lie because her legs can hardly stand pressure. But contrary to popular belief, the pain is not caused by edema, says Dr. Bertsch: "They arise due to mild and harmless inflammatory processes in adipose tissue."

Movement activity and compression counteract this and thus improve the symptoms. Therefore, the patients are prescribed individually adapted stockings, possibly also for the arms. Isabel García: "They bring a lot, but getting dressed is a real pain." Because lipedema does not include edema, i.e. no relevant accumulations of fluid, lymphatic drainage, on the other hand, makes little sense, even if many affected people find the hand movements pleasant and relieving.

Liposuction only makes sense if the weight is constant

"In addition to exercise and compression, the third pillar of treatment is weight management," says lymphologist Bertsch. Because that is also a mistake: lipedema is not a progressive disease. "We now have many patients who we have followed for ten or 20 years, and it turns out that if the weight is stable, so is the lipedema." Often, however, exactly this is not the case; about 90 percent are very overweight. Many, like Isabel García, get into a diet cycle, and every time they put on weight it happens disproportionately on their legs. In this way, a hardly recognizable predisposition becomes an increasingly visible lipedema. "That's why I'm a strict opponent of diets," says Tobias Bertsch. It is important to keep the weight constant. And liposuction only makes sense if that works.

There is a dispute about this very issue, liposuction. For a long time it was not paid for by the health insurance companies because the Federal Joint Committee (G-BA) saw no clear evidence of any benefit. But then Health Minister Jens Spahn advocated reimbursement of the costs, and a compromise has since been found: Since the beginning of the year, the operation has been paid once in certain cases, at least for women with so-called lipedema stage 3; A decision is still to be made about an extension.

Tobias Bertsch is critical of this: "If a woman has a very high BMI of over 35, I consider suctioning to be a malpractice." Because then the fat on the legs is gone for the time being, but quickly on again when the woman gains weight. In the case of severe overweight, this must be tackled directly, for example through an obesity operation such as a gastric bypass.

Self-acceptance and mindfulness need to be encouraged

Nevertheless, many have high hopes for liposuction. Without the tireless initiative of those affected, Spahn would hardly have advocated the assumption of costs. But some doctors also have an interest in this: the interventions can cost up to 20,000 euros; this is probably one of the reasons why the diagnoses are increasing. "While in the past everyone was of the opinion that it was my own fault, today it is often said that there is nothing you can do – except operate as soon as possible," says Isabel García. "According to the motto: fat gone – lipedema gone."

Sounds tempting. If only because the psychosocial challenge of living with the disease is high. Eight out of ten patients also have mental illnesses such as eating or anxiety disorders, the most common being depression. "Contrary to what is often assumed, these are not the consequences of lipedema," says Dr. Bertsch. "Instead, those affected have a psychological vulnerability regardless of this, which increases the level of suffering significantly." Many hardly dare to go out in public, or only in long clothes, this emotional strain and general stress has been shown to increase the pain felt. "The women definitely benefit from psychotherapy that promotes self-acceptance and mindfulness."

"Of course I would like the current ideal of beauty to correspond more to the Rubens woman," says Isabel García. "But I can't change that, I just learn to like myself for who I am." For the cover of your book "Lipedema. I am more than my legs" (Trias) she had her photographed in a mini dress. An exemption: "Today I stand by my figure. With a healthy lifestyle with meditation, exercise and good nutrition, my pain is now in the low range. An operation is out of the question for me. I want to be an example of how you can do it can lead a happy life.

Isabel García is a professional speaker, communication trainer and coach.

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