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.
Introduction The present exploratory study is the first so far to investigate the psychological stress in the period before the development of pain symptoms typical for lipoedema. Methods 150 patients diagnosed with lipoedema syndrome were questioned in semi-structured interviews about psychological stress and were diagnosed with psychological disorders according to ICD-10 criteria. The development of the symptoms typical for lipoedema was recorded in a second interview. Both interviews were blended together in collaboration with the patients, this means Lipoedema-associated pain and psychological stress were related to time. Result Exactly 80 % of the patients diagnosed with lipedema show a high level of psychological distress immediately before the onset of lipedema-associated symptoms! In this study, mental distress was defined as the presence of a manifest mental disorder (ICD 10 F diagnosis) such as Depression, eating disorder or post-traumatic stress disorder and/or serious psychological distress such as burnout syndrome or chronic stress. Summary These results contradict a widespread statement that all psychological problems of patients with the diagnosis lipoedema syndrome are caused solely by lipoedema, that lipoedema even causes the patient’s mental disorder.Moreover, depression and posttraumatic stress disorders are significantly related to the maximum pain intensity estimated by patients in everyday life. This demonstrates that it is imperative to rethink lipoedema therapy and to implement a psychosocial pillar in an overall therapy concept.
ZusammenfassungDas Lipödem ist weit mehr als einfach nur dickere und schmerzhafte Beine! Die Erkrankung Lipödem ist mit zahlreichen Mythen behaftet. Im ersten Teil dieser Übersicht werfen wir einen kritischen Blick auf zwei populäre Statements zum Lipödem; Statements, die vor Jahrzehnten schon Eingang in wissenschaftliche Publikationen gefunden haben und seither unkritisch und stetig wiederholt werden; Statements, die inzwischen zum selbstverständlichen Wissensallgemeingut von Lipödempatientinnen und vor allem auch von Lipödem-Selbsthilfegruppen geworden sind. In unserer Darstellung über die Mythen des Lipödems fokussieren wir uns in diesem Beitrag vor allem auf zwei Aspekte, die aufs Engste mit dem Lipödem verbunden sind: auf die Adipositas sowie auf die psychische Situation von Lipödempatientinnen – die wiederum eng mit der Adipositas in Zusammenhang steht. Dabei überprüfen wir zwei häufig publizierte Statements auf wissenschaftliche Evidenz: 1. „Das Lipödem ist eine progrediente Erkrankung”, 2. „Ein Lipödem macht psychisch krank”. Beide Statements widersprechen in hohem Maße unserer seit Jahren bestehenden täglichen klinischen Erfahrung mit diesem speziellen Patientengut. Gleichzeitig haben wir im Rahmen unserer umfangreichen Literaturrecherche festgestellt, dass es auch keine Evidenz für diese in den „Lipödemsprachgebrauch” eingegangenen Behauptungen gibt. Tatsachlich ist das Lipödem in der Regel keine progrediente Erkrankung! Vielmehr liegt bei Lipödempatientinnen häufig eine Gewichtsprogredienz (meist eine Adipositasprogredienz) vor, in deren Folge sich auch das Lipödem verschlechtern kann. Unsere Pilotstudie zum 2. Statement macht deutlich, dass in der Regel nicht das Lipödem Ursache von psychischen Erkrankungen ist. Hier weisen unsere Ergebnisse in die umgekehrte Richtung: Eine – vorbestehende – psychische Vulnerabilität kann ganz wesentlich zum Krankheitsbild Lipödem beitragen. Um das Lipödem in seiner ganzen Komplexität und Vielfalt zu erfassen, braucht es mehr als nur Medizin. Psychosoziale Therapieansätze sollten integraler Bestandteil eines wirksamen multimodalen Behandlungskonzepts sein. Neben den beiden dargestellten Mythen gibt es weitere, die sich um das Lipödem ranken. Diese werden in weiteren Ausgaben dieser Zeitschrift diskutiert werden.
<b><i>Introduction:</i></b> Lipoedema is characterized as subcutaneous lipohypertrophy in association with soft-tissue pain affecting female patients. Recently, the disease has undergone a paradigm shift departing from historic reiterations of defining lipoedema in terms of classic edema paired with the notion of weight loss-resistant leg volume towards an evidence-based, patient-centered approach. Although lipoedema is strongly associated with obesity, the effect of bariatric surgery on thigh volume and weight loss has not been explored. <b><i>Material and Methods:</i></b> In a retrospective cohort study, thigh volume and weight loss of 31 patients with lipoedema were analyzed before and 10–18 and ≥19 months after sleeve gastrectomy (SG) or Roux-en-Y gastric bypass (RYGB). Fourteen patients, with distal leg lymphoedema (i.e., with healthy thighs), who had undergone bariatric surgery served as controls. Statistical analysis was performed using a linear mixed-effects model adjusted for patient age and initial BMI. <b><i>Results:</i></b> Adjusted initial thigh volume in patients with lipoedema was 23,785.4 mL (95% confidence interval [CI] 22,316.6–25,254.1). Thigh volumes decreased significantly in lipoedema and control patients (baseline vs. 1st follow-up, <i>p</i> < 0.0001 and <i>p</i> = 0.0001; baseline vs. 2nd follow-up, <i>p</i> < 0.0001 and <i>p</i> = 0.0013). Adjusted thigh volume reduction amounted to 33.4 and 37.0% in the lipoedema and control groups at the 1st follow-up, and 30.4 and 34.7% at the 2nd follow-up, respectively (lipoedema vs. control <i>p</i> > 0.999 for both). SG and RYGB led to an equal reduction in leg volume (operation type × time, <i>p</i> = 0.83). Volume reduction was equally effective in obese and superobese patients (weight category × time, <i>p</i> = 0.43). <b><i>Conclusion:</i></b> SG and RYGB lead to a significant thigh volume reduction in patients with lipoedema.
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