Lipoedema – Myths and Facts Part 1

84 Original Article

Lipoedema – myths and facts Part 1

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

Keywords obesity progression), which can lead to ex- Lipödem-Selbsthilfegruppen geworden sind. Lipoedema, progression, obesity, mental ill- acerbation of the lipoedema. Our pilot study In unserer Darstellung über die Mythen des ness, scientific evidence on the 2nd statement makes clear that it is not Lipödems fokussieren wir uns in diesem Bei- the lipoedema that usually causes mental dis- trag vor allem auf zwei Aspekte, die aufs Summary orders. Our results point in the opposite direc- Engste mit dem Lipödem verbunden sind: auf Lipoedema is far more than just fatter and tion: Pre-existing psychological vulnerability die Adipositas sowie auf die psychische Si- painful legs! As a disorder, lipoedema is en- can significantly contribute to the clinical pic- tuation von Lipödempatientinnen – die wie- cumbered with many myths. In the first part ture of lipoedema. Medicine alone cannot en- derum eng mit der Adipositas in Zusammen- of this review, we cast a critical glance at two compass the entire complexity and variety of hang steht. Dabei überprüfen wir zwei häufig popular statements about lipoedema; state- lipoedema. Psychosocial treatment ap- publizierte Statements auf wissenschaftliche ments that found their way into scientific proaches should be an integral component of Evidenz: 1. „Das Lipödem ist eine progre- publications decades ago and which have an effective multimodal treatment concept. Li- diente Erkrankung“, 2. „Ein Lipödem macht been repeated uncritically and continuously poedema is also wreathed in other myths, be- psychisch krank“. Beide Statements wider- ever since; statements that have since be- sides the two presented in this paper. These sprechen in hohem Maße unserer seit Jahren come conventional wisdom for lipoedema will be discussed in further issues of this jour- bestehenden täglichen klinischen Erfahrung patients and, in particular, for lipoedema self- nal. mit diesem speziellen Patientengut. Gleich- help groups. In our portrayal of the myths zeitig haben wir im Rahmen unserer umfang- surrounding lipoedema, we focus in this ar- reichen Literaturrecherche festgestellt, dass ticle on two aspects in particular that are es auch keine Evidenz für diese in den „Lip- closely associated with lipoedema: obesity Schlüsselwörter ödemsprachgebrauch“ eingegangenen Be- and the psychological situation of lipoedema Lipödem, Progredienz, Adipositas, Psychische hauptungen gibt. Tatsächlich ist das Lipödem patients, which, again, is closely linked to the Erkrankung, Wissenschaftliche Evidenz in der Regel keine progrediente Erkrankung! obesity. We examine two frequently publi- Vielmehr liegt bei Lipödempatientinnen häu- cised statements for their scientific evidence: Zusammenfassung fig eine Gewichtsprogredienz (meist eine 1. “Lipoedema is a progressive disorder”, 2. Das Lipödem ist weit mehr als einfach nur di- Adipositasprogredienz) vor, in deren Folge “Lipoedema causes mental illness”. Both ckere und schmerzhafte Beine! Die Erkran- sich auch das Lipödem verschlechtern kann. statements largely contradict our many years kung Lipödem ist mit zahlreichen Mythen be- Unsere Pilotstudie zum 2. Statement macht of daily clinical experience with this specific haftet. Im ersten Teil dieser Übersicht werfen deutlich, dass in der Regel nicht das Lipödem patient population. At the same time, during wir einen kritischen Blick auf zwei populäre Ursache von psychischen Erkrankungen ist. our extensive searches of the scientific litera- Statements zum Lipödem; Statements, die vor Hier weisen unsere Ergebnisse in die umge- ture, we also determined that there is no evi- Jahrzehnten schon Eingang in wissenschaftli- kehrte Richtung: Eine – vorbestehende – psy- dence for these claims, which have now be- che Publikationen gefunden haben und seither chische Vulnerabilität kann ganz wesentlich come part of the everyday „lipoedema lan- unkritisch und stetig wiederholt werden; zum Krankheitsbild Lipödem beitragen. Um guage“. In fact, lipoedema is not usually a Statements, die inzwischen zum selbstver- das Lipödem in seiner ganzen Komplexität progressive disorder! Instead, lipoedema pa- ständlichen Wissensallgemeingut von Lip- und Vielfalt zu erfassen, braucht es mehr als tients often show weight progression (mainly ödempatientinnen und vor allem auch von nur Medizin. Psychosoziale Therapieansätze sollten integraler Bestandteil eines wirksa- Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. men multimodalen Behandlungskonzepts Correspondence to: Lipödem – Mythen und Fakten Teil 1 sein. Neben den beiden dargestellten Mythen Dr. med. Tobias Bertsch Phlebologie 2018; 47: 84–92 gibt es weitere, die sich um das Lipödem ran- Leitender Oberarzt https://doi.org/10.12687/phleb2411-2-2018 Földiklinik GmbH & Co.KG Submitted: 30 January 2018 ken. Diese werden in weiteren Ausgaben die- Rösslehofweg 2–6 Accepted: 25 February 2018 ser Zeitschrift diskutiert werden. 79856 Hinterzarten Tel. +49 7652 124 0 Fax +49 7652 124 116 E-Mail: [email protected]

Phlebologie 2/2018 © Schattauer 2018 T. Bertsch; G. Erbacher: Lipoedema – myths and facts Part 1 85

Introduction tered into scientific opinion and have therefore also become part of patient Lipoedema is far more than fatter, painful knowledge. In this article, we want to legs! examine two of these myths for scientific However, and this must be emphasised, evidence. not every fat leg means lipoedema (1)! In our clinic, lipoedema is confirmed if In the Földi Clinic in Hinterzarten – a the patients describe complaints such as European Centre for Lymphology – we tenderness to pressure (or sensitivity to provide inpatient and outpatient treatment touch or a distinctly unpleasant sensation to approximately 3000 patients annually of heaviness) as well as an increased ten- who have been diagnosed with lipoedema. dency to haematoma in the area of the dis- The vast majority of these patients arrive at proportionate soft tissue of the legs (or our clinic with perceptions and expec- arms). At the same time, the “pinch test” tations fuelled not only by the media but performed during clinical examination also also by physicians – perceptions of lipoede- has to be positive. In this test, a fold of ab- ma far removed from scientific evidence dominal fat is moderately pinched simulta- and expectations that are often beyond neously with a fold of fat on the thigh (and what is achievable. subsequently on the lower leg and, if appli- One crucial fundamental problem of cable, the arms). In contrast to the patient this disorder is that lipoedema has no ob- with lipohypertrophy alone, the lipoedema jective diagnostic criteria; no parameter, patient then experiences a marked differ- laboratory value or medical imaging exists ence in the perception of pain (limb pain). that allows anything approaching an un- Confirmation of pitting oedema is not equivocal diagnosis of this disorder. Ac- Fig. 1 Patient with lipohypertrophy of the necessary when obtaining the diagnosis, as cording to the 2015 German Lipoedema thighs and pelvic region our clinical experience has shown that rel- Guideline, “The diagnosis of lipoedema is evant oedema is only very rarely present in based on medical history, examination and lipoedema cases. This procedure also cor- palpation with reference to the typical fea- Despite the absence of objective diag- responds to the diagnostic criteria of both tures”. These features can be divided into nostic criteria, however, it is clear that the the Dutch and British Lipoedema Guide- four symptoms: symptoms are absolutely consistent with lines (8–10). • Disproportionate increase in fatty tissue the diagnosis of lipoedema. The isolated In this first article of our presentation of in the legs (and/or arms) disproportionality of the female leg, with- the myths surrounding lipoedema, we • Sensation of heaviness and/or soreness out the above symptoms, is called lipohy- focus mainly on two aspects that are very in the affected limbs pertrophy (4). The latter is an inherent in- closely associated with lipoedema: obesity • Tendency to haematoma crease in fatty tissue in the limbs. In some and the psychological situation of lipoede- • Oedema that increases during the day severe cases, this can cause gait impairment ma patients, which, again, is closely linked (2). with subsequent orthopaedic problems. to the obesity. However, the treatment then required The following articles will discuss the This lack of objective and clear diagnostic differs from that of lipoedema. scientific evidence supporting further criteria also means that no reliable figures ▶ Figure 1 shows a patient with lipohy- popular statements on lipoedema. The exist on the prevalence of lipoedema. In the pertrophy of the thighs and pelvic region. topic of the next presentation is the issue of vast majority of cases, the lipoedema is The patient has no further symptoms in “oedema in lipoedema” and thus also the diagnosed either by physicians with little the soft tissue of her legs; therefore, no li- role of manual lymphatic drainage. experience in lymphology or, almost more poedema is present. often, by the patients themselves. In our Lipoedema always develops from li- Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. patient population, the diagnosis of lipohypertrophy, although only in a very Myth 1: Lipoedema is a poedema (and, even more frequently, the small proportion of patients. The reason progressive disorder diagnosis of “lipolymphoedema”) is by far why soreness develops in the fatty tissue of the most common misdiagnosis that we some female patients (very rarely, men are This statement is found in a variety of encounter on a daily basis. All the figures also affected) and the underlying patho- scientific publications, as well as in lipoede- circulating on prevalence, including those physiology of these symptoms is currently ma portals on the internet and magazines in scientific publications, are completely still unclear and the subject of ongoing re- produced by lipoedema self-help groups devoid of any evidence and are therefore search (5–7). (11–14). The current German S1 Lipoede- not presented here (3). There are many myths in circulation ma Guidelines also define lipoedema as a about lipoedema; statements that have en- “progressive disorder” (15), and the inter-

net portal “Lipoedema Help Germany” [Li- lymphology outpatient department for isolated in the thigh area, Figure 3 with a pödem Hilfe Deutschland e.V.], which is non-private patients, we saw over 2300 pa- massive increase in fatty tissue in both the frequently accessed by patients, even tients diagnosed with lipoedema in 2015. thighs and lower legs. In lipoedema, the writes: “Lipoedema is ALWAYS progress- Only 3% of these patients were of normal feet are typically unremarkable. Both pa- ive, meaning that it gets worse” (16 areas of weight, 9% were overweight (body mass tients present with extreme findings that highlighted text in the original). index [BMI] between 25 and 30 kg/m2) and we rarely see in our clinical practice. It It is undisputed that some patients pres- 88% of our lipoedema patients were obese must be emphasised, however, that the pri- ent with a hugely disproportionate increase (BMI >30 kg/m2). mary disorder in both patients is morbid in fatty tissue – isolated – in the legs. But In this context, it should be mentioned obesity! these patients form a very small minority that the BMI of lipoedema patients who are But our daily clinical experience differs of our patient population. Nevertheless, overweight (in rare cases, also of patients in radically from the treatment of these ex- images of this small minority often serve as the lower obesity range) is only of limited treme findings. We regularly see lipoedema “typical” images of lipoedema patients in use for evaluation purposes. As shown patients, both as inpatients and outpatients, both specialist and general publications. above, there is the rare patient group with a who present with stable lipoedema over The term “progressive” suggests, how- largely slim upper body and a marked in- many years if their weight has remained ever, that this tendency to disproportionate crease in fatty tissue of the limbs. This gives stable. We are now seeing courses extend- fatty tissue, which is usually genetic in ori- the false impression that the patients are ing over 20 years of patients with stable – gin (17), increases virtually autonomously, “technically” overweight. As the latter is non-progressive – lipoedema; stable, be- fatefully and independently of general due to the fatty tissue distribution caused cause these patients have stabilised their weight gain (18, 19). This increase in fatty by the lipohypertrophy of the legs, this is weight (at varying weight levels). tissue occurs in three stages (or four, ac- not actually the case. For these patients, the We have been co-treating the patient in cording to some publications) (20–22). The waist-to-height ratio (WHtR) is the more ▶ Figure 4 as an outpatient for approxi- NDR Health Advice Booklet states: “Fat appropriate measure. The WHtR describes mately 10 years due to her lipoedema. This cells reproduce in an uncontrolled way” the ratio between waist circumference and patient’s BMI has been stable at 31 kg/m2 (23). height and is a better indicator of body fat during this time and her WHtR was 0.53. But where is the scientific evidence for distribution. In the Földi Clinic, both the Leg volumes (thighs and lower legs were this pathophysiological construct? BMI and the WHtR are determined in all measured separately) have remained vir- Data confirming the progression of li- lipoedema patients. tually unchanged during these 10 years. poedema and/or a pathophysiology sup- The above figures, which show the close Wearing flat-knit compression hosiery porting this assertion do not exist! E.V. association between obesity and lipoede- every day and undertaking regular sport- Allen and E.H. Hines, who initially de- ma, are also confirmed by centres in the ing activity 2–3 times weekly, the patient is scribed lipoedema and, in their 2nd publi- Netherlands and Great Britain that treat li- asymptomatic. cation in 1951 (together with E. Wold) first poedema patients (26, 27). The lipoedema However, the majority of our patients used the term “progressive enlargement of patient of normal weight is a rarity! do experience weight progression over the the limbs ...” (24), are often cited. However, Why is the question of progression so years. This can be continuous; much more even those who were first to describe the important and why is the clarification of frequently, lipoedema patients experience a disease realised that the progressive course this statement of such huge practical sig- weight increase that occurs due to regular of lipoedema “is ordinarily associated with nificance? “dieting” and the subsequent “yo-yo effect”. weight gain”. This weight gain in lipoedema In addition to their symptoms, many of With lipoedema, the advice to lose (“gradual increase of body weight”) had al- our lipoedema patients have one feature in weight conventionally is particularly perni- ready been emphasised in the first publi- particular: they are afraid; afraid that their cious. On the one hand, 95% of all people cation of 1940 (25). lipoedema is progressive. The vast majority who lose weight with the usual commercial The question therefore arises, as to of our patients have already read up about and non-commercial diets regain the whether the leg circumference has in- lipoedema on the internet (and have thus weight within 3 years (28–35). At the same creased because the patients have had an been given incorrect information!). The in- time, studies at the University of Hohen- Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. overall weight gain. In this case, it would be ternet often shows images of patients with heim have shown that women (in contrast the body weight that was progressive, not an extreme (but in reality very rare) fatty to men) regain a disproportionate amount the lipoedema. An increase in leg circum- tissue increase in the legs or arms. Conse- of weight in the lower body after weight ference would then be expected as part of quently, most of our patients express great loss (36). In other words: every medical the weight gain. The pathophysiology ob- concern that their lipoedema could also recommendation to a lipoedema patient to viously supports this point of view. reach such proportions. For this reason, it lose weight increases the risk of exacerbat- A glance at our patient population is very important to clarify this question. ing the lipoedema. makes clear that a close association exists ▶ Figure 2 and ▶ Figure 3 show pa- It is thus clear that there is no evidence between excess weight and/or obesity and tients diagnosed with lipoedema: Figure 2 that lipoedema is progressive. It is, In fact, the clinical picture of lipoedema. In our with an extensive increase in fatty tissue often the body weight that is progressive

Phlebologie 2/2018 © Schattauer 2018 T. Bertsch; G. Erbacher: Lipoedema – myths and facts Part 1 87

Fig. 2 Patient diagnosed with lipoedema with a Fig. 3 Patient diagnosed with lipoedema with a severe increase in fatty tissue isolated in the massive increase in fatty tissue in both the thighs thighs and lower legs and, as a result, the lipoedema also showed the now frequently cited microan- worsens. eurysms of the lymph capillaries. However, If lipoedema is not progressive, how- the transport capacity of the lymphatic sys- ever, then the term “lipolymphoedema” tem was in no way impaired in the Amann- makes no sense either. “Lipolymphoede- Vesti study. Further clinical studies using ma” suggests that “progressive lipoedema” indirect lymphography and lymphoscinti- leads to lymphoedema; it suggests that the graphy have also shown that lymph trans- Fig. 4 Patient with lipoedema whom we have lipoedema causes the lymphoedema. In port from the subepidermal compartment co-treated as an outpatient for approximately 10 years. some classifications, the “lipolymphoede- functions in lipoedema, in contrast to ma” is also classed as stage IV lipoedema. lymphoedema (40–42). Karen Herbst from the University of Ar- A major weakness of the data of both izona and a protagonist of the American li- Bilancini and Amann-Vesti is the lack of Our experience with thousands of lipoedema scene writes: “Lipoedema there- any description of the weight situation of poedema patients in recent years also lends fore is a pre-lymphedema condition” (37). the patients studied. Neither publication clinical support to this assumption. If a li- It must be emphasised that there is in- gives any details at all of the patients’ BMI. poedema patient, who is 165 cm tall and sufficient scientific evidence for this popu- Knowledge of the BMI is, however, essen- weighs 90 kg, gains a further 20 or 40 kg in lar point of view. There are neither histo- tial in order to determine whether the ir- weight, lymphoedema can develop in addi- logical investigations supporting the con- regularities in the lymphatic system are tion to the lipoedema. This lymphoedema struct of “lipolymphoedema” nor medical really due to the lipoedema, as postulated is then not lipoedema-induced lymphoede- imaging procedures that have provided any and often cited, or whether they are more ma, however, but rather obesity-associated corresponding confirmation. Ultimately, likely to be obesity-induced. Amann-Vesti lymphoedema. The associated pathophysi- Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. when mentioning “lipolymphoedema”, the even begins her presentation by stating “Li- ology was outlined in this issue in the ar- vast majority of authors refer to the studies poedema is a special form of obesity” (43). ticle on obesity-associated lymphoedema. by Amann-Vesti from 2001 and Bilancini It can therefore be assumed that the li- The term “lipolymphoedema” should et al. from 1995 (38, 39). Only 12 (!) pa- poedema patients she investigated were therefore be deleted from the vocabulary of tients were investigated in each of the two obese and that some were perhaps severely lymphology. It should also be deleted be- studies. Whereas Bilancini, using dynamic obese. It seems likely, therefore, that the cause it is frequently misused to allow pre- lymphoscintigraphy, determined a slowed changes observed in the lymph capillaries scription of manual lymphatic drainage, lymph flow in lipoedema patients, Amann- were obesity-induced, in the sense of initial the treatment most in demand from li- Vesti, using fluorescence microlymp- obesity-associated lymphoedema. poedema patients. The fact that this misuse hography in the same patient population, is also officially promoted strongly re-

sembles a farcical situation. Manual lym- consequences (46, 47). Those affected often phatic drainage is correctly not listed in the experience an initial lack of understanding Medicines Catalogue [Heilmittelkatalog] as of their problems, even by physicians (50); an indication for lipoedema. This makes it often takes several years before the diag- sense from the medical point of view, as the nosis of lipoedema is obtained and appro- evidence for any relevant oedema (oedema priate therapy given. in the sense of fluid) is completely absent Publications repeatedly report mental for lipoedema. (This point is the topic of disorders in lipoedema patients (50–54). Part 2 of this presentation). This decision, Overall, however, data on the relationship although medically reasonable, is reduced between lipoedema and the psyche are cur- to absurdity in a joint question and answer rently very sparse. A study in 100 lipoede- catalogue of the Leading Associations of ma patients in the Stutz Liposuction Clinic Statutory Health Insurance Funds and the concludes that 74% suffer from chronic National Association of Statutory Health eating disorders (53) and 8% have actually Insurance (KBV) by the following formu- undertaken at least one suicide attempt lation: “Lipoedema is used synonymously (54). with lipolymphoedema; it can thereby be In a world-wide, internet-supported classified under LY1 or LY2 and treated survey initiated by Smidt in N=1416 par- with MLD” (44). ticipants in 2015, 39.7% self-assessed them- Of course, the patient forums and self- selves as having depression (compared with help groups make many references to this a prevalence of 3–17% in the general popu- nonsense, which is officially legalised by an lation) and 16.5% cited eating disorders administrative act (45). (compared with a prevalence of 1–5% in In other words: two completely different Fig. 5 Patient treated as an outpatient for years the general population). However, 30.37% disorders (lipoedema and lymphoedema) due to lipoedema. of the participants had not been medically are confused with each other to facilitate diagnosed with lipoedema (52). the eligibility for prescription of a therapy; In another internet-based investigation a therapy that has no proven effect on the an obesity epidemic. An exacerbation of by Dudek et al in 2016 (51) with N=328 one clinical picture (lipoedema), whereas it the lipoedema can first occur as part of the participants, 31.8% cited eating disorders presents a central therapeutic module for progressive weight gain. The term “li- in the self-assessment. Depression and the other (lymphoedema). polymphoedema” is thus also incorrect anxiety were diagnosed here using the Pa- In our clinical practice, we mainly see from a medical point of view. tient Health Questionnaire (PHQ- 9), patients who present with these three dis- We should understand this perception whereby 56.8% of participants showed in- orders concurrently: obesity, lymphoedema of lipoedema as good news, which we creased to greatly increased scores for de- and lipoedema. Manual lymphatic drain- should share with our lipoedema patients. pression. age is essential for these patients, but as We can tell our patients that their lipoede- The role of psychological factors in the treatment of the obesity-associated lymp- ma will neither progress nor deteriorate origin of other somatic disorders, such as hoedema, not of the lipoedema. ▶ Figure 5 and that it will remain stable – provided cancers, has been taken into account for shows a patient treated as an outpatient for that their weight remains stable. years (e.g. 55). For example, in rheumatoid years due to lipoedema. In the last 8 years, arthritis (56), psychological factors, such as she has gained approximately 40 kg in stress, play an important role. weight. In the meantime, distal leg lymp- Myth 2: Lipoedema causes To date, with regard to lipoedema, the hoedema has developed in addition to the mental illness. implicit impression has been given that lipoedema. The recommended therapeutic mental disorders, such as depression or approach to this clinical picture is pres- Women affected by lipoedema can suffer eating disorders, are purely the result of the Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. ented in the article on obesity-associated from a variety of problems. This particu- lipoedema. But – is this really true? lymphoedema (in this issue). larly applies to the experience of lipoede- In general, the problems in research ma-related pain and impaired mobility, mainly appear in two areas: Firstly, there is which leads to a reduction in physical a risk of overlooking important aspects by Conclusion quality of life (46, 47). In addition, many reducing the complexity. Secondly, statisti- women with lipoedema suffer from dissat- cal associations in the sense of a correlation There is no scientific evidence that lipoede- isfaction with their body’s disproportional- are often incorrectly interpreted as a ma takes a progressive course. Rather, it is ity and the associated stigmatisation. They causality. The following questions thus weight gain and obesity that are very often have problems in accepting their own arise: in how many women with lipoedema progressive. The WHO is already talking of bodies and in self-acceptance, as well as its is it really the lipoedema that causally leads

Phlebologie 2/2018 © Schattauer 2018 T. Bertsch; G. Erbacher: Lipoedema – myths and facts Part 1 89 to the mental disorder, in how many it is Results Only 4% of the women with lipoedema merely a comorbidity and in how many showed an accentuated personality with does the mental disorder possibly have an N=45 patients were included in the study perfectionist traits – a “variety” of normal- important involvement in the development (▶ Table 1). The main results are presented ity that does not represent a personality of the pain symptoms of lipoedema? here and, for better legibility, they are disorder. In order to help clarify these open ques- rounded up to whole numbers in the text. 16% of the women in the total sample tions, we conducted a pilot study at our A distinction was made between subgroup reported having had specific suicidal clinic. n1 with a BMI <40 kg/m2 and subgroup n2 thoughts in the past, such as jumping from with a BMI ≥40 kg/m2. a bridge or lying down in front of a train. 84% of the total sample show very pro- They denied any association with the li- Pilot study nounced psychological symptoms (▶ Table poedema. The main triggers were stressful 2), which preceded the development of li- life events, such as separation initiated by Research question: Does lipoedema lead to poedema-related pain. This combines the partner, a life-threatening disorder in a mental disorders? mental disorders, symptoms only slightly child or serious conflicts at the workplace. Methodology: Patients randomly re- less severe than those of a mild depressive One patient had previously undertaken a ferred to a certain ward during their inpa- episode and burnout syndrome (67). The suicide attempt due to family conflicts. tient stay in the Földi Clinic in the study latter is not considered a mental disorder in 64% of the women with lipoedema (n1: period from April to December 2017 were diagnostic terms but rather a performance- 59%, n2: 68%) show mental disorders that included in the study. The requirement was related work and motivational disturbance. definitely occurred prior to the develop- a diagnosis of lipoedema of the legs, which Stressful life events entailing only short- ment of lipoedema-related pain and thus, had been reconfirmed medically in the term stress and strain occur in the lives of in terms of formal logic, certainly cannot specialist lymphology clinic, with the typi- almost all the participating women but in be a result of the lipoedema. Both mental cal symptoms of disproportionality, ten- the pilot study show no effects on the pain disorders that are still current and also dency to haematoma and pain due to the symptoms of lipoedema. those no longer present were taken into lipoedema. The figures show that, at the time of the consideration here. The period six months Thereafter, a psychological psycho- investigation, 53% of the total sample (n1: prior to the development of the lipoedema- therapist with specific experience in this 47%, n2: 57%) had at least one mental dis- related pain is shown to be of particular patient population conducted semi-struc- order. The current diagnoses of the study significance. tured interviews with the patients. These subjects result in the following picture Regarding the question of the develop- were usually divided into two sessions and (▶ Table 3): ment of mental disorders in pre-existing li- included: Depressive disorders are to the fore, al- poedema, the results show the following: 1. Ascertaining the current mental dis- though this category lists only those that 2% of the total sample show a mental disorders according to the ICD criteria (57) reach at least the degree of severity of a order mainly due to the lipoedema; in 9%, and all mental disorders that had oc- mild depressive episode. Dysthymia was an involvement of the lipoedema symp- curred in the patient’s medical history classified under Other. In clinical diag- toms is determined in the development of a 2. The symptoms associated with the li- nostics, 16% fulfil the criterion of an eating mental disorder. In 89%, the mental dis- poedema (cf. 58) disorder and 18% have an abnormality in orders initially occurring after lipoedema 3. The overlapping of both areas. their eating behaviour that does not yet ful- were not directly associated with the symp- fil the criterion of an eating disorder ac- toms of the lipoedema. Questionnaires proved ill-suited to the ex- cording to the ICD. It should also be borne plorative nature of the study, as they show a in mind that 7% of the participants had al- too limited range of symptoms (cf. 59–62), ready developed a post-traumatic stress overestimate psychological symptoms in disorder before developing lipoedema. somatic disorders, e.g. depression (63, 64), and cannot depict the temporal course. Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. Particularly in the concept of depression, it Tab. 1 Description of the sample: N=45 has been recently shown that, rather than being a unified concept, depression con- Patients with Patients with Total sample sists of various symptom clusters (65, 66), BMI <40 kg/m2 BMI >40 kg/m2 N=45 consideration of which is relevant to a suc- n1=17 n2=28 cessful psychotherapeutic treatment. Age in years 17 – 62 32 – 62 17 – 62 Mean age 41.06 45.61 43.88 BMI range in kg/m2 24.01 – 39.48 40.65 – 71.52 24.01 – 71.52 Mean BMI 31.47 48.39 41.99

Discussion The results clearly indicate that only in the more than 2300 patients undergoing rare cases does lipoedema directly lead to outpatient treatment for lipoedema at the The results show that more precise diag- mental disorders and that the traditional Földi Clinic were obese. However, the per- nostic data were acquired in the clinical in- view of the case history must be broadened. centage of obese women with lipoedema is terview than in the previous online sur- The statement “lipoedema causes mental also high in the online surveys conducted veys. The patients’ spontaneous self-assess- illness” is plainly incorrect for the vast ma- to date: e.g. 46% (N=120) with a BMI >40 ment in questionnaires often overestimated jority of women with lipoedema. If the so- kg/m2 (6), or in a further study, a mean the existence of a mental disorder. It is pos- matic preconditions for developing li- BMI of 41.25 kg/m2 (N=321) (51). sible to make more nuanced enquiries poedema are present, the statement should As Luppino (70) has shown in a meta- about many areas in the interview. Where- instead read: “There are many indications analysis, a bidirectional relationship exists as in online surveys (68, 69) 56.7% of the that psychological factors can contribute between obesity and depression. Thus, the women surveyed reported “inexplicable significantly to the development of lipoede- onset of depression increases the risk of weight gain”, in the interview for the pres- ma”. obesity by 58%; the onset of obesity in- ent pilot study, various reasons were always In order to work out clear causal associ- creases the risk of depression by 55%. If given for the weight gain, sometimes ac- ations, interviews with a larger cohort one considers the fact that weight gain can companied by feelings of shame. This would be desirable, as well as the use of a lead to exacerbation of the lipoedema, it is shows the advantages of structured inter- suitable control group, e.g. women with li- then not surprising that severe psychologi- views even if they are very time-consum- pohypertrophy (an increase in fatty tissue cal symptoms, often also accompanied by ing. in the pain-free leg). Due to the lack of any weight gain, precede the development of li- Most of the women with lipoedema had treatment contract, however, we hardly poedema-related pain. had severe psychological symptoms for ever see such women in the specialist It has now been sufficiently verified that several months prior to developing li- clinic. psychological factors modulate the percep- poedema-related pain. Purely in terms of The two clinical pictures of lipoedema tion and processing of pain (71). To date, formal logic – and this has been verified – and obesity cannot be investigated inde- no studies exist on pain in lipoedema, but something that temporally precedes the de- pendently of each other: 82% of the pilot there are some studies on pain in ortho- velopment of lipoedema cannot be its con- study participants are obese. This corre- paedic (72) or rheumatic disorders (56). sequence. sponds approximately to the rate in the Negative influencing factors on pain inten- Földi Clinic: as mentioned above, 88% of sity are withdrawal behaviour, helplessness and hopelessness, unhappy, dejected mood (71) or catastrophising (72). The associ- Tab. 2 Occurrence of mental disorders or psychological vulnerabilities prior to the development of li- ations between psychological factors and poedema in % of the subgroups divided according to BMI pain perception are bidirectional here. Psychological dis- Patients with Patients with Total sample The underlying problems often start turbances or vulner- BMI <40 kg/m2 BMI >40 kg/m2 N=45 well before the development of a mental abilities prior to li- n1=17 n2=28 disorder or lipoedema. An ideal of beauty poedema that already describes women who are of yes 94.12 78.57 84.44 normal weight and clothes size 38 as “plus size” (representative of several: 73,74), no 5.88 21.43 15.56 leads many women to feel dissatisfied with their own bodies. Attempts to lose weight Tab. 3 Current mental disorders (without other psychological vulnerability) in % of the subgroups di- by means of numerous diets, usually fol- vided according to BMI or % of the total sample N=45, sometimes with multiple diagnoses lowed by a yo-yo effect, result in a vicious circle for women with a corresponding dis- Patients with Patients with Total sample BMI <40 kg/m2 BMI >40 kg/m2 N=45 position with exacerbation of the disproportionality. n1=17 n2=28 Dieses Dokument wurde zum persönlichen Gebrauch heruntergeladen. Vervielfältigung nur mit Zustimmung des Verlages. Even the initial and frequently cited Depressive disorders 23.53 39.29 33.33 papers on lipoedema by Allen and Hines in Eating disorders 5.89 21.43 15.56 1940 (25) and 1951 (24) point out the sig- Anxiety disorders 5.89 10.74 8.89 nificance of the ideal of beauty: “Indeed, it Post-traumatic stress 5.89 7.14 6.67 is quite probable that much or all of the dis- disorders tress (both emotional and physical) associated with lipoedema would not occur were Pain with somatoform 11.76 3.57 6.67 elements “fat legs” considered a manifestation of beauty.” (24). Other 5.89 7.14 6.67

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