Do you suffer from a fat distribution disorder?

Despite a lot of sport, your legs remain thick or even become stronger? Many of the women who suffer from this phenomenon may have stumbled upon the term lipedema (or fat distribution disorder) while searching for reasons. At the latest since Federal Health Minister Jens Spahn recently hit the headlines with his demand that liposuction should be covered by the health insurance companies, many women have become very sensitive to this term.

Living with lipedema: A patient tells

Because in addition to the symptoms, you suffer from stigmatization: terms such as “riding pants” or “angle arms” hurt, especially when women already do a lot to get rid of weight but it does not help. Besides the fact that it is nobody’s business anyway how their legs or arms look, for many women the injustice contained in the criticism plays a major role. Whether a OP is really the best solution and what also helps with this fat distribution disorder is explained here by three doctors.

Who does lipedema affect?

What exactly is lipedema?

Causal research: How does lipedema develop?

First signs: What symptoms suggest lipoedema?

What are the treatment options for lipedema?

Does liposuction help against lipedema?

What happens during liposuction?

Does the health insurance company pay for liposuction for lipedema?

What are the risks of liposuction?

Cost factor OP How expensive is liposuction?

If you gain a lot of weight on your thigh but not on your upper body, it may be due to lipedema. © Blaj Gabriel / Shutterstock.com

Who does lipedema affect?

In Germany up to 10 percent of all women are said to be affected by lipedema. It is difficult to determine exactly because the symptoms are similar to those of other diseases. In addition, not all women suffer equally from the disease, which is why many do not go to the doctor.

Even the term is not uncontroversial: “Unfortunately, even the name lipedema is misleading,” says angiologist Dr. med. Florian Lüders of the Ambulant Vascular Center Münster. The ancient Greek word lípos means fat and oídēma means swelling. Lipedema has little to do with swelling fat masses, however. “Lipoedema is an overhydration of fatty tissue caused by a non-functioning lymphatic system,” explains Dr. Lüders.

“First and foremost, countermeasures and treatment must be taken here.” Liposuction is only the second step and not, as is often claimed, the panacea that gets to the root of the problem and promises a permanent cure. The study situation is still far too unclear for such claims.

5 tips that make you more confident Isabel Garcia describes in her book “Lipedema. I am more than my legs” (Trias Verlag), Isabel Garcia describes her self-help strategies, gives styling and repartee tips and advice against pain. © Westermann & Buroh Studios, TRIAS Publisher

What is lipedema?

Lipedema is a painful change in the subcutaneous fatty tissue caused by a disturbed lymphatic system. In other words: In order to better classify lipedema, you need to understand how our lymphatic system works. Nutrients and waste products are transported through the lymph vessels, and pathogens and foreign substances are also disposed of. The lymph nodes serve as filter stations.

If the lymphatic system is disrupted, for example by an infection, the lymph fluid accumulates in the intercellular space and can become visible as swelling. “In this case we are talking about lymphedema or water retention,” says the physician.

In contrast, in lipedema the lymphatic system is permanently damaged due to a variety of triggers. The tissue gradually dilutes, gradually becomes over-fat and absorbs the substances contained in the lymphatic fluid (including sugars, fats, proteins or various enzymes). This results in the uneven, swollen skin of the patients.

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“You can imagine it like a soaked sponge,” says the surgeon, vascular physician and lymphologist Dr. med. She is a specialist in surgery and also works at the Ambulant Vascular Centre Münster. “We have patients whose lymphatic system is so damaged that the lymph is already leaking out through the skin.

Lipedema typically starts at the thighs and is therefore often mistaken for very pronounced so-called “riding pants”. However, the difference between a disease-related fat distribution disorder and harmless female curves is that neither sport nor a change in diet can help. “Patients lose weight everywhere except in the pathologically altered areas,” says Dr. Herrera. The result is pain in the affected regions, which are extremely sensitive to touch.

The further the lipedema progresses, the larger the layers of fat that eventually overlap, the skin of the affected regions appears knotty and uneven.

Hormonal fluctuations can also cause lipedema. © Image Point Fri / Shutterstock.com

Cause study: When do I get lipedema?

As already mentioned, research on lipedema is still in its infancy. Accordingly, experts disagree on the exact causes of the fat distribution disorder. At present, however, there are theories according to which there are two main causes that are believed to promote lipedema:

  • Genetic factors: The lipedema is apparently inherited. Both women and men can pass the disease on to their offspring.
  • Hormonal causes: Lipedema often occurs in phases in which the hormone balance of the woman changes massively. This can be at the beginning of puberty, during pregnancy or at the beginning of the menopause. Taking the pill can also be the cause of sudden lipedema. Apparently an excess of the female hormone oestrogen plays a decisive role here.

Even though it is often said that any form of dietary change or sports programme is useless against lipedema, those affected should not resign. “Lack of exercise and being overweight can have a negative effect on the lymphatic system”, says Dr. Tica Herrera. “Anyone who wants to do something good for their lymphatic system in general should be physically active and do a balanced cardio-strength training”.

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First signs: What symptoms suggest lipoedema?

But how do women know whether they are suffering from a fat distribution disorder or have simply gained weight in the traditional way? The first important difference: “Lipoedema can be accompanied by pain in the corresponding parts of the body,” says Dr. Florian Lüders.

If you also feel a distinct pain with only light pressure on the skin, this could also be an indication of lipedema.

Also optically there are some special features: While the buttocks, legs, hips and arms are extremely enlarged and appear shapeless in lipoedema, other parts of the body, such as the face, neck, waist, hands and feet, usually remain very slim. Lipoedema often ends abruptly at the joints, so that the wrists and ankles as well as the trunk of the body appear perfectly normal or even dainty, making the proportions of the affected person appear extremely inconsistent.

Patients also often have bruises on the affected body parts. Another indication of lipedema: it occurs symmetrically on both arms or legs.

What are the treatment options for lipedema?

First of all: Unfortunately, there is currently no drug treatment that helps with lipedema. The advice of some doctors to try dehydrating medication is, according to Dr. Lüders is not only wrong, but also counterproductive: “If you remove water from the lymph, it only becomes more viscous.

Therefore: Do not take so-called diuretics if they are to be administered due to lipedema. Those affected should consult a specialist if they suspect that they are suffering from lipedema; at best an angiologist who is familiar with vascular diseases. The latter will arrange for a so-called lymph scintigraphy – a procedure in which an image of the lymphatic tracts is taken to determine whether the lymphatic system is working properly.

Such a lymph scintigraphy is thus fundamental for the diagnosis of lipedema.

If a dilution of the tissue is detected here, two therapies are usually used: lymph drainage and wearing compression garments. Both are intended to support lymph flow and thus reduce swelling in the limbs.

Compression stockings relieve the pain of lipedema. © Albina Glicic / Shutterstock.com

Does liposuction help against lipedema?

Testimonials from women who have undergone liposuction make those affected yearn for it. Longing and at the same time anger at the statutory health insurance companies, which have so far refused to include liposuction for lipoedema in their catalogue of services, only making decisions on a case-by-case basis and only paying for lymph drainage and compression stockings without any problems.

“From a medical point of view and for the protection of the patient, this is absolutely right,” says Dr. Florian Lüders. Because liposuction does not solve the problem. Lüders often treats people in his practice whose lymphatic system is not functioning properly, who have developed lipedema and want liposuction as quickly as possible. In his experience, many patients have wrong ideas about what a lipedema is, how it develops and, at best, how it should be treated.

The idea that the lipedema disappeared after liposuction and never came back is dubious. After all, this does not eliminate its cause. An operation is above all useful to relieve discomfort and avoid consequential damage and of course it is also a great help for optical reasons.

Dr. med. Jan Esters, specialist for plastic and aesthetic surgery and senior physician at the St. Marien-Hospital in Lüdinghausen knows cases where patients have liposuction carried out up to 9 times a year. “Even though many patients are free of complaints for many years after liposuction, lipoedema is still a chronic disease that can recur time and again.

According to him, especially when it comes to lipoedema, a really good diagnosis and treatment always belongs in the hands of different specialist disciplines. He believes that this is the only way to provide the best possible treatment for those affected.

Does the health insurance company pay for liposuction for lipedema?

Not just like that. But there is movement in the subject. The Joint Federal Committee (G-BA ) of health insurance companies and doctors has decided in 2018 on the key points for a study to test liposuction for lipoedema, with the help of which findings about the advantages and disadvantages of the intervention are to be gained. So far, according to G-BA namely, proof of a clear benefit. Moreover, the study is urgently needed to define quality standards with regard to the intervention.

However, it is likely to take some time before concrete results are available.

This does not mean, however, that payment by the health insurance company is fundamentally excluded: “If you can prove that you have carried out lymphatic drainage and therapy with compression stockings for two years, you will be paid for the liposuction by the statutory health insurance company on the basis of a decision made by a specialist on a case-by-case basis,” says Dr. Lüders.

Therefore, the accusation that the statutory health insurance companies would refuse liposuction for lipoedema per se is not correct. “I am firmly in favor of liposuction,” says the physician. But it must be medically justifiable and must not be propagated as a panacea. Statements such as “The earlier you operate, the better” are simply wrong and by no means a serious help for the affected persons.

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What happens during liposuction?

Whoever decides to have liposuction today has the choice between very different methods. Among the four most common ones are the WAL – and TLA -technology as well as ultrasonic and vibration liposuction.

Dr. Jan Esters has been working successfully for years with the TLA – technique (tumescent local anaesthesia). The doctor injects the patient with a solution that floats the fatty tissue so that it can be more easily suctioned off.

Around 5 to 6 litres can be suctioned off per operation, which means that several sessions are often necessary – and with good reason: if too much fat is suctioned off at once, there is a risk of complications.

Don’t give up: It’s not true that exercise “does nothing” with lipedema. © lfz / Shutterstock.com

What are the risks of liposuction?

The typical risks of liposuction include, for example, that the body contour appears irregular after the operation and the legs have dents and bumps. The tissue, lymphatic vessels or fasciae can also be injured, which in turn can cause lymphedema. However, this is actually the exception with experienced doctors. “Suctioning a lower leg is much more demanding than, for example, suctioning a stomach, precisely because so many vascular structures run through it,” says Dr. Esters.

“It is therefore immensely important that the surgeon works closely with colleagues such as angiologists and vascular physicians.

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“Liposuction is not a simple procedure, even if it is shown on television every now and then,” says Dr. Esters. Dr. Lüders agrees with this: “Take an interest in the doctor who is treating you and don’t be blinded by titles!”

To give you an example: the title “plastic surgeon” is not protected and therefore not a mark of quality. “Nowadays, as a doctor, you can attend weekend courses in Botox injections and then call yourself a cosmetic surgeon,” says Dr. Esters. It is therefore essential that you seek treatment from an experienced specialist in plastic and aesthetic surgery. A reputable doctor may also reject patients if he or she feels that the risks involved are too great.

This is not harassment, but an absolutely necessary form of medical care.

Once the procedure has been successful and the wounds have healed, the patients not only enjoy a significantly slimmer and more defined silhouette, but are also free of symptoms for the time being. This means that the pressure pain in the body parts has disappeared for the time being and makes it much easier for the women to be active in sports again afterwards.

Cost factor OP How expensive is liposuction?

If the health insurance does not pay and the desperation is great, women often think about paying the costs of liposuction themselves. “Concrete price indications are hardly possible here, because they vary enormously depending on the case,” says Dr. Esters. For example, a liposuction could cost 2,000 Euros for one patient and 5,000 Euros for another. Ultimately, each patient must be considered individually.

The diagnosis of lipedema is a blow, no question. But don’t give up on yourself. Get support from a therapist, continue to exercise to activate the lymphatic system, wear your support stockings confidently and tackle the subject of liposuction calmly and with the help of real experts. Above all: Do not let it get you down!

Book suggestion: “Lipedema. I am more than my legs” by Isabel Garcia, Trias Verlag (about 20 €)