Lipoedema – myths and facts, Part 5

Abstract

The four previous articles in this series addressed the myths and facts surrounding lipoedema. We have shown that there is no scientific evidence at all for the key statements made about lipoedema – which are published time and time again. The main result of this “misunderstanding” of lipoedema is a therapeutic concept that misses the mark. The patient’s real problems are overlooked.The national and especially the international response to the series, which can be read in both German and English, has been immense and has exceeded all our expectations. The numerous reactions to our articles make it clear that in other countries, too, the fallacies regarding lipoedema have led to an increasing discrepancy between the experience of healthcare workers and the perspective of patients and self-help groups, based on misinformation mostly generated by the medical profession.Parts 1 to 4 in this series of articles on the myths surrounding lipoedema have made it clear that we have to radically change the view of lipoedema that has been held for decades. Changing our perspective means getting away from the idea of “oedema in lipoedema” – and hence away from the dogma that decongestion is absolutely necessary – and towards the actual problems faced by our patients with lipoedema. Such a paradigm shift in a disease that has been described in the same way for decades cannot be left to individuals but must be put on a much broader footing. For this reason, the lead author of this series of articles invited renowned lipoedema experts from various European countries to discussions on the subject. Experts from seven different countries took part in the two European Lipoedema Forums, with the goal of establishing a consensus. The consensus reflects the experts’ shared view on the disease, having scrutinized the available literature, and having taken into account the many years of clinical practice with this particular patient group. Appropriate to the clinical complexity of lipoedema, participants from different specialties provided an interdisciplinary approach. Nearly all of the participants in the European Lipoedema Forum had already published work on lipoedema, had been involved in drawing up their national lipoedema guidelines, or were on the executive board of their respective specialty society.In this fifth and final part of our series on lipoedema, we will summarise the relevant findings of this consensus, emphasising the treatment of lipoedema as we now recommend it. As the next step, the actual consensus paper “European Best Practice of Lipoedema” will be issued as an international publication.Instead of looking at the treatment of oedema, the consensus paper will focus on treatment of the soft tissue pain, as well as the psychological vulnerability of patients with lipoedema. The relationship between pain perception and the patient’s mental health is recognised and dealt with specifically. The consensus also addresses the problem of self-acceptance, and this plays a prominent role in the new therapeutic concept. The treatment of obesity provides a further pillar of treatment. Obesity is recognised as being the most common comorbid condition by far and an important trigger of lipoedema. Bariatric surgery should therefore also be considered for patients with lipoedema who are morbidly obese. The expert group upgraded the importance of compression therapy and appropriate physical activity, as the demonstrated anti-inflammatory effects directly improve the patients’ symptoms. Patients will be provided with tools for personalised self-management in order to sustain sucessful treatment. Should conservative therapy fail to improve the symptoms, liposuction may be considered in strictly defined circumstances.The change in the view of lipoedema that we describe here brings the patients’ actual symptoms to the forefront. This approach allows us to focus on more comprehensive treatment that is not only more effective but also more sustainable than focusing on the removal of non-existent oedema.

Differential diagnoses and treatment of lipedema

“…Even after extreme weight loss, for example after bariatric surgery or in cancer cachexia, patients typically lose less fat in the areas affected by lipedema than in the nonaffected areas [ Figure 7]. Lipedema and obesity share the hallmark of symmetrical fat increase [26] . However, differential diagnostic criteria include the different distribution of fat in obesity (which is typically more in the "central" pattern) and that the fat is not usually tender/painful.…”

“…Management of any associated obesity is therefore crucial to the successful management of lipedema. Bariatric surgery may be a successful way of reducing weight and maintaining the achieved loss [27] .…”

“…Other components of conservative treatments are physical activity, healthy food plans to reduce any obesity component of lipedema, and psychosocial counseling. There is, however, a current debate about the value of the use of MLD in the routine management of lipedema [32] .…”

Letter to the Editor regarding Lipoedema – myths and facts, Part 1 and Part 5. European Best Practice of Lipoedema – Summary of the European Lipoedema Forum consensus. Phlebologie 2020; 49: 31–49

“…We also agree depression and poor mobility adversely affect quality of life [30] and increase pain. We have no evidence to support the statement that: "psychological factors can contribute significantly to the development of lipoedema" [31]. F. Liposuction: We disagree that "Liposuction is not a treatment option in patients with a BMI > 35 kg/m 2 and central obesity (WHtR > 0.5)" [1].…”

Lipoedema and Pain: What is the role of the psyche? – Results of a pilot study with 150 patients with Lipoedema

“…Lipoedema is so much more than just having thick painful legs. Lipoedema is a syndrome whose definition includes both a disproportionate distribution of subcutaneous fatty tissue that is more pronounced in the legs (and sometimes also the arms) and pain in the soft tissues of the legs (and/or arms) [1,2]. Lipoedema-associated pain and restriction of mobility are linked to a physical reduction in the quality of life [3,4].…”