188 Original Article

Lipoedema – myths and facts Part 3

T. Bertsch1; G. Erbacher1,2 1Földiklinik Hinterzarten – Europäisches Zentrum für Lymphologie; 2Dipl.-Psychologin, Psychologische Psychothera- peutin, Supervisorin (hsi)

Keywords has no effect on lipedema“. For both state- Zusammenfassung Lipedema, lipoedema, obesity, weight loss, ments there is neither a reasonable physio- Um das Lipödem ranken sich zahlreiche My- scientific evidence logical or pathophysiological construct nor is then! In dieser kleinen Übersichtsreihe über there any scientific evidence in the literature. die Mythen des Lipödems werfen wir einen Summary Furthermore both statements contradict our kritischen Blick auf populäre Statements zum Lipedema is associated with numerous many years of daily clinical experience with li- Lipödem; Statements, die vor Jahrzehnten myths. In this short series we offer an over- pedema patients to a high degree. It actually schon Eingang in wissenschaftliche Publika- view of the myths of lipedema, and we throw seems that the converse is true: Weight gain tionen gefunden haben und seither unkritisch a critical eye over popular statements con- seems to be a decisive trigger for the devel- und stetig wiederholt werden; Statements, cerning the disease; statements that found opment of lipedema, in patients with the die dadurch inzwischen zum selbstverständli- their way into scientific publications decades right genetic disposition. Lipedema and obes- chen Wissensallgemeingut von Lipödempa- ago, and which have been accepted and re- ity are two different diseases, but mostly they tientinnen und vor allem auch von Lipödem- peated since then without criticism; state- appear together. We see patients on almost a Selbsthilfegruppen geworden sind. Im ersten ments which have become widely accepted daily basis, who effectively lose weight after Teil unserer Darstellung haben wir uns kri- facts for lipedema patients, and particularly successful bariatric as part of our tisch mit zwei populären Mythen über das for lipedema self-help groups. In the first part obesity program, including in the limbs. Li- Lipödem auseinandergesetzt. Hierbei haben of this series we took a critical look at two pedema patients regularly experience con- wir festgestellt, dass sowohl für das State- popular myths about lipedema. We found siderable improvement in the pain symptoms ment „Das Lipödem ist eine progrediente Er- that there is no scientific evidence for neither typical for lipedema through sustained krankung“ als auch für das Statement „Ein “Lipedema is a progressive disease“, nor “Li- weight loss. These patients are often symp- Lipödem macht psychisch krank“ keine wis- pedema causes mental illnesses“. In the sec- tom-free, so that we can then say that the li- senschaftliche Evidenz vorliegt. In einem ond article about the myths of lipedema we pedema is in remission. In our fourth con- zweiten Beitrag über die Mythen des Lip- focussed on the aspect, on the tribution to the series we will examine the ödems fokussierten wir uns auf den Ödem- “edema in lipedema“ and the subsequent significance of for lipedema, in aspekt, auf das „Ödem im Lipödem“ und die therapeutic consequences – manual lymph order to then present a therapeutic concept in hieraus erfolgende therapeutische Konse- drainage. We were also able to show that the last part of the series, that is not only quenz: die Manuelle Lymphdrainage. Wir there is no scientific evidence for the popular based on scientific evidence, but should also konnten darlegen, dass für das populäre statement: “lipedema is primarily an “edema contribute to a long-term and comprehensive Statement „Das Lipödem ist in erster Linie ein problem“; manual lymph drainage is thus the improvement in the symptoms of lipedema „Ödem-Problem“, daher ist die Manuelle essential standard to be conducted patients. Lymphdrainage essenzielle und regelmäßig regularly“. There is thus no basis for the pre- durchzuführende Standardtherapie“ eben- scription of long term regular manual lymph falls keine wissenschaftliche Evidenz existiert. drainage with the aim of removing edema. In Der regelmäßigen und dauerhaften Verord- this, the third part of the series on familiar Schlüsselwörter nung von Manuellen Lymphdrainagen mit and often quoted “lipedema statements“ we Lipödem, Adipositas, Gewichtsabnahme, Wis- dem Ziel der „Ödembeseitigung“ fehlt daher take a closer look at two other myths: 4: “li- senschaftliche Evidenz jede Grundlage. In diesem dritten Teil der pedema makes you fat“ and 5: “weight loss Auseinandersetzung über bekannte und oft Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. zitierte“ Lipödem-Statements“ beschäftigen wir uns mit zwei weiteren Mythen: 4. „Das Correspondence to: Lipödem – Mythen und Fakten Teil 3 Lipödem macht dick“ und 5. „Gewicht ab- Dr. med. Tobias Bertsch Phlebologie 2018; 47: 188–197 Leitender Oberarzt https://doi.org/10.12687/phleb2421-4-2018 nehmen hat keinen Effekt auf das Lipödem“. Földiklinik GmbH & Co.KG Received: 02. Mai 2018 Für beide Statements gibt es weder ein sinn- Rösslehofweg 2–6 Accepted: 14. Mai 2018 volles physiologisches bzw. pathophysiologi- 79856 Hinterzarten sches Konstrukt noch eine sich in der Literatur Tel. +49 7652 124 0 Fax +49 7652 124 116 findende wissenschaftliche Evidenz. Darüber E-Mail: [email protected] hinaus widersprechen beide Statements in

Phlebologie 4/2018 © Georg Thieme Verlag KG 2018 T. Bertsch; G. Erbacher: Lipoedema – myths and facts Part 3 189

hohem Maße unserer seit Jahren bestehen- täglich sehen wir Lipödempatientinnen, die ödem in Remission sprechen können. In ei- den täglichen klinischen Erfahrung mit Lip- sich aufgrund ihrer morbiden Adipositas einer nem vierten Beitrag werden wir uns mit dem ödempatientinnen. Tatsächlich scheint das bariatrischen Operation unterzogen und da- Stellenwert der Liposuktion beim Lipödem Gegenteil richtig: Gewichtszunahme wirkt durch effektiv – auch im Bereich der Extremi- beschäftigen, um dann in unserer letzten als entscheidender Trigger, um – bei entspre- täten – Gewicht verloren haben. Patientinnen Darstellung ein therapeutisches Konzept vor- chend genetischer Disposition für ein Lip- mit Lipödem erfahren durch diese meist nach- zustellen, das nicht nur wissenschaftlich fun- ödem – dieses überhaupt erst zu entwickeln. haltige Gewichtsabnahme regelhaft eine deut- diert ist, sondern auch zu einer nachhaltige- Lipödem und Adipositas sind zwei unter- liche Besserung ihrer lipödemtypischen ren und umfassenderen Beschwerdebesse- schiedliche Erkrankungen, die jedoch in den Schmerzen. Häufig sind die Patienten dann be- rung unserer Lipödempatientinnen beitragen meisten Fällen gemeinsam auftreten. Fast schwerdefrei, sodass wir dann von einem Lip- soll.

Introduction poedema makes you fat!” and secondly, the sense is illusory in such patients because it message spread by many lipoedema ex- is not actually present due to the fat dis- This is already the third part of a presenta- perts “Weight loss has no effect on lipoede- tribution through the lipohypertrophy of tion that casts a critical eye over popular ma!” the legs. The WHtR (Waist-to-Height statements about lipoedema, myths that Right at the beginning of our remarks, Ratio) is the more suitable measure for have surrounded the disease for decades. we have to point out that there is no scien- these patients. It describes the ratio be- In the first part of our series on lipoede- tific data to support these two myths. How- tween waist circumference and height and ma, we showed that there is no scientific ever, there are also none for the contrary gives a better indication of the distribution evidence for the widely disseminated asser- thesis, i.e. for the statement that lipoedema of body fat. In the Földi Clinic, we measure tion that “lipoedema is a progressive dis- does not lead to weight gain and that both the BMI and the WtHR in all patients ease” and that the frequently misused term weight loss certainly does lead to an im- with lipoedema. “lipolymphoedema” is therefore obsolete provement in symptoms! So how can this apparent relationship (1). It is not the disease of lipoedema that is Nevertheless, it appears obvious that between lipoedema and obesity be ex- progressive, but often the disease of obesity. there is a close correlation between being plained? If both lipoedema and also lymphoedema overweight or obese and the disease of li- In the absence of scientific data, we are present in a severely obese female pa- poedema. We saw 2344 women diagnosed want to examine the plausibility and em- tient, this is, therefore, not “lipolym- with lipoedema in our SHI-accredited out- pirical evidence for the two popular state- phoedema” but obesity related lymphede- patient lymphology clinic in 2015. Only 3% ments. ma (2). of these patients were of normal weight, 9% In addition, our pilot study showed that were overweight (BMI between 25 and the statement “Lipoedema causes mental 30 kg m/2) and 88% of our lipoedema pa- Myth 4: Lipoedema makes illnesses” is also a myth with no scientific tients were obese (BMI > 30 kg/m2) (5). you fat! basis whatsoever. Instead, it appears that a Our patient collective appears largely rep- high psychological vulnerability con- resentative in this regard. For example, Patients as well as the media are keen to ex- tributes significantly to the development of Bosman reported that up to 80% of his fe- plain the connection between lipoedema lipoedema – not least due to the increased male lipoedema patients in a centre in the and obesity as being that lipoedema is re- perception of pain (3). Netherlands were overweight and/or obese sponsible for the weight gain in women In the second part of our review, we de- (not separated into overweight and obes- with lipoedema. voted our attention to the statement “Li- ity) (6). In 2011, the British research group For example the magazine Stern has poedema is primarily an “oedema prob- of Child and Gordon reported that only 4% written, “Women who suffer from lipoede- lem”; regular manual lymphatic drainage is of their lipoedema patients were of normal ma are generally incorrectly considered to therefore essential”. We showed that neither weight, 11% were overweight and 85% be simply overweight”... and... “many clinical, imaging nor histological evidence obese (7). These figures clearly demon- women affected (and a few men) have been Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. exists for “oedema in lipoedema”. Hence, strate the strong relationship between li- slim all their lives before the fat pads on there is no indication for long-term and poedema and obesity. A lipoedema patient their arms and legs suddenly increase un- regular manual lymphatic drainage (4). of normal weight is a rarity! controllably“ (8). This third part of our presentation on It must be borne in mind in this context Sputnik, the youth-oriented station of the myths of lipoedema concerns the sensi- that the BMI is of only limited value in li- Central German Radio, describes lipoede- tive topic of “lipoedema and obesity”. There pedema patients in the overweight region ma on its website as a “mysterious disease are two particular statements that accom- (between 25 and 30 kg/m2). There is the that makes people fat” (9). pany our daily clinical work with lipoede- rare group of patients with a largely slim Evidero, a German internet health port- ma patients. First of all, the statement par- upper body and marked increase in fat in al, lists lipoedema as the first disease that ticularly popular with patients that “Li- the extremities. Overweight in the strict can lead to becoming overweight, even be-

© Georg Thieme Verlag KG 2018 Phlebologie 4/2018 190 T. Bertsch; G. Erbacher: Lipoedema – myths and facts Part 3

fore hypothyroidism. On its website it ant criterion for this disease. This initially and particularly among doctors, weight-re- states that “lipoedema has nothing to do often only slight disproportionality is fre- lated discrimination and stigmatisation is with eating” (10). quently seen even during puberty. The especially marked (30–32). Even medical During the preparation of this article, young women are generally asymptomatic students find disparaging jokes about obese the German NDR television channel at this time; at most there is mild lipohy- people not inappropriate because of the broadcast an item on lipoedema in its pro- pertrophy of the legs that is of no patho- opinion that they are themselves to blame gramme “Market”. A severely obese woman logical significance whatever. The risk of for being overweight. But stigmatising atti- laboriously climbing stairs was shown right symptoms and hence of the development of tudes towards obese patients can also be at the start of the clip. At the same time, the lipoedema only starts when the weight found among medical specialists in obesity off-stage voice was heard saying “Climbing progresses and the associated over-propor- and dieticians (33–34). stairs – a painful torture for R. W. She tional increase in fat in the lower half of the The referral letters we receive regarding suffers from a rare disease called lipoede- body occurs. our patients regularly contain the medical ma, a disorder of fat distribution that There is therefore much to be said for recommendation to reduce weight. As causes her to constantly put on weight” (11, the opposite view that it is not the lipoede- mentioned above, the causes of the disease here only the initials of the patient are ma that leads to weight gain, but that of obesity are complex – as also recognised given, not the name). weight gain (often obesity) can, in the case by the WHO. “Guilt” (or “the accusation of A severely obese lipoedema activist has of the relevant (genetic) disposition, result incorrect behaviour”) is therefore not only now propagated the notion “Lipoedema in in lipoedema. a less than helpful explanation for obesity, the belly” on YouTube (12). The causes of obesity are varied and but is simply wrong! This approach is even more widespread highly complex. There is scientific evidence At the same time, the data concerning in the USA, where there is a coalition of for genetic and especially epigenetic in- the poor prognosis of conservative weight doctors and women patients who explain fluences (15–18). Biological factors such as reduction are impressive. Depending on their weight gain by the disease lipoedema. stress or addictive behaviour can affect the study, between 80% and 99% of all pa- In a specialist article by Dr. Karen Herbst, weight (19–20). Psychological diseases tients who lose weight conservatively will endocrinologist and protagonist of the such as depression and eating disorders can put it on again in the long term (35–42). In American lipoedema scene, a patient who greatly contribute to obesity (21). Finally, women in particular, attempts to reduce weighs more than 200 kg writes: sociocultural changes also play a consider- weight that were started during adoles- “I have a congenital condition called li- able role in the development of obesity: for cence lead to an often decade-long dieting pedema that causes my body to produce example, changes in eating habits, the exor- spiral with a continuous increase in weight excess adipose tissue, also known as fat” bitant consumption of sugar (particularly (43). The routinely stated medical recom- (13). A US internet portal for overweight in soft drinks and in industrially-prepared mendation to the overweight woman to people, states that “Lipedema May Increase foods), and a lifestyle with little exercise. lose weight is thus highly problematic! Obesity in Women” (14). Added to these is a beauty ideal that is en- The advice to reduce weight is especially As a result of this view propagated in sconced in the underweight range and is deceitful in lipoedema. Studies by Hohen- the media, we are confronted on a daily therefore closely connected with a diet cul- heim University have shown that women basis in the Specialist Lymphology Clinic ture which often begins in adolescence and (in contrast to men) regain their weight or also in the SHI-accredited outpatient whose long-term course does not lead to after weight loss over-proportionately in clinic, with women diagnosed with li- weight loss, but on the contrary, to weight the lower half of the body (44) – and, as poedema who tell us things such as, “My increase (22–26). stated above – almost all diet participants legs are becoming fatter and fatter and In Germany, roughly 25% of the popu- put their lost weight back on. In other hurt”. Mind you: the patient who made this lation are now obese (BMI > 30 kg/m2) words, any recommendation by a doctor to statement weighs 90 kg or 140 kg, for and in the USA this figure had already female lipoedema patients to lose weight example. But the focus of the patient was reached 40% in 2017 (27–28). actually increases the risk of a further in- explicitly on her legs. Then this is often fol- This shows how obesity has become an crease in fatty tissue in the leg region and lowed by the second statement, “Because of epidemic in the past decades (29) and as a hence also increases the risk of their symp- Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. my lipoedema, I am constantly putting on result – the diagnosis of lipoedema as well! toms increasing. weight”. So if lipoedema doesn’t make one fat, In our opinion, the “boom” in lipoede- There is no scientific evidence for this how can the broad support for this scien- ma is also due to the way the unloved dis- view! There is also no conclusive patho- tifically untenable position be explained? ease of obesity is handled by medical pro- physiological construct to explain how li- The essential basis for the popularity of fessions as outlined above. On the part of poedema leads to weight gain, to weight this view of lipoedema is the stigmatisation patients, lipoedema has thus developed gains of 20 kg, 50 kg or 70 kg! of the disease of obesity, which is fre- into an “excuse”, into a kind of “alibi” for There is general agreement that a dis- quently considered to be the result of incor- weight gain and for being overweight. If proportionate increase in fat in the legs rect behaviour, a weak will or lack of disci- obesity is judged as culpable behaviour, (sometimes also in the arms) is an import- pline. Even among medical professionals, then – according to the view popular

Phlebologie 4/2018 © Georg Thieme Verlag KG 2018 T. Bertsch; G. Erbacher: Lipoedema – myths and facts Part 3 191 among patients – the disease of lipoedema with obesity, For example Schmeller wrote two problems is not helpful. In our experi- is the explanation for the constantly in- that “often lipoedema is confused with ence, many of our female patients with li- creasing weight. “I am not fat, I suffer from obesity or is regarded as a partial symptom poedema often suffer more from the pro- lipoedema” is the credo of many lipoedema of obesity”. (49); or in another publication: gressive weight increase (and hence the as- self-help groups, that then also finds reson- “even doctors and medical professionals sociated “currently unfashionable body ance in the media (45–47). frequently overlook the disease or confuse shape”) than from the actual pain in the On a daily basis we are confronted in it with obesity or lymphoedema” (50). legs. the Specialist Lymphology Clinic by Cornely and Gensior were similarly wor- As a consequence of this view propa- women with lipoedema who are con- ried, whose website states that “Lipoedema gated by many lipoedema experts – and vinced, based on this false information is rarely diagnosed quickly and correctly. therefore also by lipoedema patients – (published in a variety of channels) that the Often patients have to put up with hearing: there is the assumption that weight loss lipoedema is responsible for their long his- You are too fat“ (51). also has no influence on the lipoedema tory of progressive weight gain. It is labori- Karen Herbst, endocrinologist and pro- (and/or the symptoms that occur with the ous and time-consuming to convince pa- tagonist in the American lipoedema scene lipoedema). It would merely reduce the tients that they are misinformed. It is la- entitled her article that mainly discussed li- “obesity fat” but not the “lipoedema fat”. borious and time-consuming to convince poedema, “Rare adipose disorders (RADs) The above-mentioned endocrinologist, patients that there are other factors that masquerading as obesity”. In it she wrote Herbst has written that “Although lifestyle lead to an increase in weight – but defi- that “One of the most common misconcep- changes and bariatric surgery work effec- nitely not lipoedema. It is laborious and tions about patients with lipedema is that tively for the obesity component” ... “ these time-consuming to convince patients that they suffer, instead, from lifestyle- or diet- treatments do not routinely reduce the ab- the frequently desired treatment options – induced obesity”; and at another point: Li- normal subcutaneous adipose tissue” of li- manual lymphatic drainage or liposuction pedema “may be misdiagnosed as obesity” poedema (56). – will in no way result in a substantial, per- (52). Schmeller has also stated that weight manent or even only approximately satis- This view of lipoedema is taken up with loss helps “but only in the case of obesity factory weight loss. alacrity by the media and by patients. The and it merely reduces truncal circumfer- magazine Stern said that “Women who ence. Since the lipoedema-specific fat ac- suffer from lipoedema are usually falsely cumulations cannot be lost by going on a Conclusions accused of simply being overweight and an starvation diet, the discrepancy between actress writing about lipoedema (and trunk and extremities gets even worse” There is no evidence that lipoedema leads whose book has risen to become a best (57). Under the heading “The facts are to weight gain. Our clinical experience, re- seller in the lipoedema scene in Germany) therefore”, Cornely declared that “An im- peated numerous times a day, points in the believes that many women with lipoedema provement through dieting and sport is not opposite direction. Given the right genetic are regarded in medical practices as “just possible“ (58). A doctor called Stutz who, disposition for lipoedema, weight gain ap- being obese” (53–54). It goes without say- like Schmeller and Cornely, performs lipo- pears a decisive trigger for developing it in ing that this popular view is shared by li- suction is convinced that the fat pads on the first place. This is confirmed by the poedema self-help groups and internet fora the legs are not the same as stored reserve data from our internal obesity programme, (55). fat in obesity. In his patient flyer Stutz de- in which currently more than 400 patients It cannot be emphasised enough: the clares that “This fat has a quite different are being extensively diagnosed and docu- great majority of women with lipoedema structure and therefore cannot be lost mented (48). are actually ALSO obese! through dieting and sport” (59). Normal or slightly overweight women To repeat the figures already given It is conspicuous – and this remark is with highly disproportional fat distribution above just one more time: a woman of nor- permissible – how strongly especially doc- and soft tissue symptoms do exist, but in mal weight with lipoedema is actually rar- tors who practice liposuction in Germany view of the overwhelming majority of ity! In the 2015 patient collective seen at commit themselves to this approach. For obese and morbidly obese women with li- our outpatient clinic (more than 2300 fe- example, the websites of other liposuction Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. poedema, they form a very small minority. male patients), only 3% of those with li- colleagues contain the information that poedema were of normal weight; similar sport and weight loss have no positive ef- figures have been reported from England fects on lipoedema (e.g. 60–62). Myth 5: Losing weight has and the Netherlands. In other words, by far This view is also gratefully adopted by no effect on lipoedema! the greater number of these women suffer patients and lipoedema self-help groups. from two problems – from obesity AND li- The lipoedema portal frequently visited by This statement represents a further dogma poedema. Focussing on the lipoedema in a women with lipoedema considers unsuc- within lipoedema mythology. With almost woman with a BMI of 35 or 45 or 55 kg/m2 cessful weight reduction to be the “key complete regularity, it is lamented that appears to us grotesque and does little to symptom” of lipoedema: “The amount of medical professionals confuse lipoedema achieve the objective; the division of the fatty tissue in lipoedema cannot be reduced

© Georg Thieme Verlag KG 2018 Phlebologie 4/2018 192 T. Bertsch; G. Erbacher: Lipoedema – myths and facts Part 3

either by dieting or by sport (diet-resis- More permanent and more substantial proach by the disastrous long-term prog- tance). Even extreme weight loss diets that are weight losses that women have experi- nosis of attempts at conservative weight re- make the upper body and face emaciated enced as part of our multimodal obesity duction as proved by the consistent data al- and bony, do not reduce the lipoedema programme, in which lymphoedema and ready mentioned above and confirmed by (key symptom)” (63, emboldened in the also lipoedema patients with a BMI up- our long clinical experience with patients original). wards of 40 kg/m2 are prepared – provided who have been under our lymphological Leaving aside the fact that neither the they are suitable and have consented – for care for years and whose weight has con- authors nor (on asking them) the senior surgical obesity treatment. The obesity pro- tinuously increased during their “dieting and the medical director of the gramme of the Földi Clinic has already careers” often over many years. Instead of Specialised Lymphology Clinic have set been outlined in an earlier issue of this “diet and exercise” the credo of our clinic is eyes on lipoedema patients in the past dec- journal (66). The weight reduction achiev- “stabilize and exercise”. In addition, along- ade looking “emaciated and bony” and ed with this programme is also regularly side the compression therapy essential for there is just one single photo of someone reflected in a generally proportional reduc- all women with lipoedema, the promotion on the Internet that is shown time and time tion in circumference of the extremities. of self-acceptance – especially the accept- again (96), the question remains as to the In other words, the weight loss achieved ance of one’s own body – is of overriding scientific evidence of this viewpoint that is within the framework of bariatric surgery importance for this group of patients. Only so popular with experts and patients. (gastric bypass or sleeve gastrectomy) by when this is achieved is it possible for them What is the basic pathophysiological women with lipoedema is also experienced to escape from the vicious circle of diets, construct for the assumption that weight substantially and generally permanently in yo-yo effects and worsening of the lipoede- reduction in the obese, female lipoedema the region of their arms and legs. A certain ma. patient does not also lead to substantial loss disproportionality of the legs usually re- As well as the improvement in their li- of fat in the extremities? mains after successful weight loss. How- poedema symptoms, women who have It is clear that the above-named authors ever, the sole asymptomatic dispropor- undergone bariatric surgery also experi- also provide no explanatory model in their tionality of the legs is generally not a patho- ence other positive effects such as a marked publications that justifies their published logical condition. The aim of this medical increase in their mobility and hence also in statements to any extent at all. In that re- treatment is not a leg that approaches the their quality of life (67–68). spect all that remains are myths, myths that current beauty ideal – this would be the Added to that is the cardiovascular for years have been passed on and adopted task of cosmetic surgery that, of course, benefit of surgical treatment of obesity: by women with lipoedema. The reasons would not be undertaken at the expense of diabetes mellitus, high blood pressure and why even the doctors practicing liposuc- society as a whole! The aim of this medical sleep apnoea syndrome improve, or often tion have a considerable part in the spread- treatment is primarily to improve or abol- disappear completely (69–73). ing of these myths is a matter for specu- ish symptoms. The overwhelming majority Finally, several large studies show the ef- lation. of our patients experience a marked im- ficacy of bariatric surgery in terms of re- These myths contradict the historical provement in their symptoms as a result of duction in long-term mortality. Following publications of Allen and Hines, the first the often considerable fat reduction in their sleeve gastrectomy or gastric bypass oper- people to describe lipoedema in 1940 and legs, many even become pain-free. We then ations, patients live longer and healthier 1951, who wrote that “In cases of general- speak of “lipoedema in remission”. If the lives than comparably obese patients who ized obesity, sharp reduction of weight may course of body weight remains largely do not have such procedures (74–77). help” (64–65). stable also in subsequent years, it is un- The frequent assertion by nutritionists This description of the first authors also likely that symptoms will recur. Thus the li- that the metabolic outcome of conservative corresponds to the clinical experience with poedema becomes a – generally only still nutritional programmes is comparable to lipoedema patients that we and our col- mild – lipohypertrophy of no pathological that of sleeve gastrectomy or gastric bypass, leagues in the Specialised Lymphology significance whatsoever. These positive ex- is, in our opinion, more wishful thinking Clinic have amassed over many years. periences of weight loss on lipoedema, col- than scientific evidence. For example, G. Again and again, we see women with li- lected over many years, are currently the Faerber wrote in this journal, “These re- Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. poedema, who – at least for a short time – subject of a study with the University of sults are therefore comparable to those have succeeded in losing weight through Freiburg. after bariatric procedures” (78). The author conservative therapy and thereby also We advise obese patients with a BMI provides two studies as a basis for this achieved – at least temporarily – a reduc- below 40 kg/m2 or patients in whom (e.g. statement, with an extremely low sample tion in fat in the region of the extremities due to internal or psychological contraindi- size (11 and 29 subjects respectively!) and (each patient at the Földi Clinic undergoes cations) surgery for obesity is not possible also of extremely short duration (maxi- detailed measurements of the arms and/or to undertake long-term weight stabili- mum 8 weeks!). During these eight weeks, legs in addition to measurements of height, sation. At the same time, we explicitly ad- the subjects were subjected to a 600 kcal weight, BMI, abdominal circumference vise against diets or conservative weight re- diet (Optifast from Nestle) (79, 80). Vari- and waist-to-height index). duction programmes. We justify this ap- ous metabolic parameters were then

Phlebologie 4/2018 © Georg Thieme Verlag KG 2018 T. Bertsch; G. Erbacher: Lipoedema – myths and facts Part 3 193 measured. The question as to how long these subjects continued this 600 kcal diet after the end of the study remains open and it is not known how the metabolic par- ameters subsequently developed. The conclusions drawn from these few studies that have compared results from those with bariatric procedures – which, as mentioned above (69–71, 73–77), have in- volved several thousand patients over many years – are astonishing and ulti- mately only understandable if one shares the critical attitude of Faeber to surgical treatment options. The failure of conser- vative weight reduction programmes in the long term has been documented by many high-grade studies (81–91) and has already been described by Bertsch (2) in this jour- nal. The author (Faeber) also expressly warns against “malnutrition or nutritional deficiency, osteoporosis, oesophagitis” and more. A wider training of nutritional specialists and dieticians in the art of post- operative care following bariatric surgery would, in our opinion, be a better response than the sweeping dissuasion from using a Fig. 1 Lipoedema patient (weight 122 kg, Fig. 2 Lipoedema patient (weight 122 kg, treatment option that gives very many pa- height 168 cm, BMI 43 kg/m2) before sleeve ga- height 168 cm, BMI 43 kg/m2) before sleeve gast- tients the chance of a healthier, longer and strectomy. The volume of each leg was 19 litres). rectomy. The volume of each leg was 19 litres). easier life. In addition, in her article Faerber warns against an increased rate of suicide after bariatric surgery. In the same article in this journal (78) she refers to the study by Tindle (92) in the USA. An increased sui- cide rate compared to the general popu- lation (!) is also described in a review by Peterhänsel (93). On critical reflection it rapidly becomes clear that a wholly unsuitable comparison was used here and the groups were not comparable with each other: one group of patients who had undergone bariatric sur- gery was compared with a parallel group matched according to age and gender – from the normal population (92). However, Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. the far more significant BMI was com- pletely ignored, although it is known that persons with a higher BMI in particular also show a higher comorbidity of mental diseases (94). However, if obese patients prepared to undergo a bariatric procedure are com- pared with a group of obese patients from Fig. 3 Patient from Figs. 1 und 2, 11 months Fig. 4 Patient from Figs. 1 and 2, 11 months the population, then the two groups do not after bariatric surgery. Weight now 74 kg, BMI after bariatric surgery. Weight now 74 kg, BMI differ with regarded to their self-harming 26 kg/m2. 26 kg/m2.

© Georg Thieme Verlag KG 2018 Phlebologie 4/2018 194 T. Bertsch; G. Erbacher: Lipoedema – myths and facts Part 3

Fig. 7 Patient from Fig. 5, one year later. Excess skin with subcutaneous fat.

Fig. 5 Patient with lipoedema and meanwhile Fig. 6 Patient from Fig. 5, one year later, after a also predominantly distal leg oedema. gastric bypass.

behaviour or the frequency of attempted specialists in internal , general next step in this case is dermatolipectomy suicides (95). The alleged increased sui- practitioners as well as surgeons. by the plastic surgeons. cidality is therefore not – as is often ▶ Figures 1 and 2 show a lipoedema pa- The lipoedema patient in ▶ Figures 8 wrongly assumed – the result of the bariat- tient (weight 122 kg, height 168 cm, BMI and 9 lost 65 kg in weight within 14 ric surgery, but much rather the conse- 43 kg/m2) before a sleeve gastrectomy. The months after a sleeve gastrectomy. After quence of the increased psychological vul- volume of each leg is 19 litres). weight stabilisation of just one year, the nerability of the group of patients with se- In ▶ Figures 3 and 4 we see the same plastic surgeons tightened the hanging vere obesity. patient 11 months after bariatric surgery. belly overlying the genital region and the To explain the suicides, Tindle et al (92) Her weight was now 74 kg, BMI 26 kg/m2 loose thigh skin. There were no longer any also concluded: “Suicides are not necess- and the leg volume per leg now 9 litres. The symptoms of lipoedema, so we could again arily attributed to the bariatric surgery, but patient was completely free of symptoms, speak of lipoedema in remission. In the may be related to myriad factors”. so that in this case we speak of “lipoedema case of this patient, there was certainly no So Faerber‘s argumentation comes to in remission”. to tighten the longer any lipohypertrophy. nothing. Irrespective of this, the import- thigh skin was not absolutely necessary in ance of thorough preparation and aftercare this patient. of patients who subject themselves to sur- Figure 5 shows a patient with li- ▶ Conclusions Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. gery for obesity cannot be emphasised poedema and also distal obesity related enough – also to identify those patients of the legs prior to a gastric There is neither any scientific nor any em- who require psychotherapeutic support bypass operation, ▶ Figure 6 shows the pirical evidence for the popular statement and to provide it promptly and compet- same patient one year later. The remaining that weight loss does not improve lipoede- ently. symptoms of lipoedema are, at most, mild ma. Our more than 10 years’ clinical ex- The treatment of morbidly obese people and occur rarely; the obesity related lymp- perience points to the exact opposite. Per- is only successful in the long term if hoedema of the legs also underwent a great sistent weight loss leads to a marked im- specialised professional groups pull to- improvement. The excessive skin with sub- provement in symptoms and the patients gether: nutritionists, psychotherapists, cutaneous fat is obvious in ▶ Figure 7. The are often symptom-free. We then speak of lipoedema in remission.

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