{"paper_id":"502d1b2d-3e2e-46ff-be22-8cfaf05ecb2e","body_text":"RESEARCH Open Access\n© The Author(s) 2025. Open Access  This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, \nsharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and \nthe source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this \narticle are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included \nin the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will \nneed to obtain permission directly from the copyright holder. To view a copy of this licence, visit  h t t p  : / /  c r e a  t i  v e c  o m m  o n s .  o r  g / l i c e n s e s / b y / 4 . 0 /.\nFalck et al. BMC Women's Health          (2025) 25:171 \nhttps://doi.org/10.1186/s12905-025-03707-1\nBMC Women's Health\n*Correspondence:\nJohanna Falck\njohanna.falck@ju.se\nFull list of author information is available at the end of the article\nAbstract\nBackground Lipoedema is a loose connective tissue disease primarily affecting women characterized by an \nabnormal build-up of painful fat in the legs and arms. In healthcare, lipoedema is often confused with obesity, and \ntoday, diagnostic tools and standardized guidelines for adequate treatments are lacking. Still, research on how \naffected women manage their health problems and whether they are satisfied with their care remains sparse. \nTherefore, this study aimed to contribute knowledge on healthcare experiences, and their use and self-reported \neffects of self-care and treatments among women with lipoedema.\nMethods This national study, with a mixed-methods design, involved 245 women with lipoedema, recruited from all \nLipoedema Association groups across Sweden. Data were collected between June and September 2021 through an \nonline survey that included closed- and open-ended questions on self-care, lipoedema treatment, patient satisfaction, \nand healthcare experiences. Data were analysed using descriptive and inferential statistics, and qualitative reflexive \nthematic analysis.\nResults The results showed a delay in diagnosis spanning decades, often preceded by numerous healthcare \nvisits. Many women attempted to cope with their health problems using various self-care approaches. However, \nlipoedema treatments performed by healthcare providers were deemed the most effective. Overall, the women \nreported significantly low satisfaction with healthcare. The lowest score, 48 points out of 100, was found in the \noverall impression of offered care, reflecting perceived inefficiency and unmet expectations. Compared to a general \nSwedish female population, the most significant gaps were found in the dimensions of information and knowledge, \nand emotional support, 22 and 25 points lower, respectively. The women described their experiences in healthcare \nas a challenging and isolated journey. Four themes were generated: A lonely and demanding journey in the healthcare \nsystem; An uncertainty of and inconsistency in available healthcare; A burden of being unheard and disrespected in \nhealthcare; and The impact of lack of knowledge in healthcare.\nConclusions Seeking care for lipoedema is a long and burdensome journey with limited access to tailored care. \nMany women make significant efforts to manage their health problems independently. This emphasizes a need for \ntimely lipoedema diagnosis, improved support, and better access to effective treatments.\nDealing with lipoedema: women’s experiences \nof healthcare, self-care, and treatments—a \nmixed-methods study\nJohanna Falck1*, Annette Nygårdh2, Bo Rolander3,4, Lise-Lotte Jonasson1 and Jan Mårtensson1\n\nPage 2 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \nBackground\nLipoedema is a loose connective (adipose) tissue disease \nthat almost exclusively affects women and manifests as an \nabnormal accumulation of painful fat, mainly in the but -\ntocks, lower extremities, and arms [ 1, 2]. Disease onset \nmainly occurs during periods of hormonal change such \nas puberty, pregnancy, and menopause. The aetiology of \nlipoedema is not fully known; however, the female hor -\nmone oestrogen, is believed to play a role [ 3, 4]. Another \ncontributing factor appears to be heredity, as there is \noften a (female) family history of lipoedema [5– 7].\nLipoedema is characterised by nodular and painful \nfat, easy bruising, numbness, swelling, and heaviness [ 2] \ncaused by inflammation, fibrosis, and microangiopathy \nin adipose tissue [ 8]. Lipoedema mainly affects the lower \nextremities and sometimes the upper arms. Hands and \nfeet are typically spared [ 2]. The disease onset primarily \noccurs during puberty and causes health problems, limi -\ntations in daily activities, and lower health-related quality \nof life, which tends to worsen as the disease progresses \n[9– 11].\nLipoedema is classified into five different types depend-\ning on its location in the body [ 2]. Type 1 affects the but-\ntocks, Type 2 affects the buttocks and thighs, Type 3 \nextends to the calves, Type 4 involves the arms, and Type \n5 affects only the lower legs. Lipoedema is also classified \naccording to disease progression. Stage 1 refers to regular \nskin but enlarged fat tissue; Stage 2 is uneven skin with \nindentations in the fat tissue and larger mounds of fat \ntissue (lipomas) and Stage 3 features large tissue extru -\nsions causing deformations [ 2]. The clinical presentation \nof lipoedema varies; however, most women experience \ngradual progression over time [ 7, 12]. Diagnosis is based \non medical history and a comprehensive physical exami -\nnation [2, 7].\nCurrently, there is no cure for lipoedema, and guide -\nlines on how to treat it are generally lacking. However, \nsome approaches and treatments have shown promising \nresults in reducing lipoedema symptoms, improving the \nquality of life, and preventing disease progression [ 2]. \nOffering women with lipoedema educational and psy -\nchosocial support to promote self-care - that is, interven -\ntions that people can improve upon to maintain health or \ncope with health problems with or without support from \nhealthcare providers [ 13, 14] - is essential [ 2]. Although \nweight loss has little or no effect on lipoedema, weight \nmanagement through a healthy diet and physical activ -\nity is important for reducing the risk of obesity and obe -\nsity-related conditions and improving mobility [ 2, 15]. \nPhysical exercise should be individualised, and women \nwith severely impaired mobility should be encouraged to \nseek physiotherapy advice for an individual training plan. \nConservative treatment involves individually adapted \nstatic compression garments, active pneumatic compres -\nsion devices, manual lymphatic drainage, and deep tissue \ntherapy to reduce fibrosis, all of which reduce discomfort \nand relieve aches and pain by providing containment and \ntissue support [ 16, 17]. Liposuction is a surgical option \nthat reduces pain, bruising, and swelling and improves \nmobility by treating adipose tissue enlargement [ 18– 20]. \nGiven the variations in disease progression and clinical \npresentation, it is essential to regularly assess function -\ning, limitations in daily activities, and health-related \nquality of life to address individual needs and optimize \ntreatment strategies [ 21]. Furthermore, as lipoedema \noften occurs with multiple and diverse comorbidities \nand health problems such as obesity, hypothyroidism, \nmigraine, fibromyalgia, allergies, and sleep disorders [ 10, \n22], an interdisciplinary approach should be pursued \n[23].\nAn important aspect of care is involving and engaging \npatients in their care and seeing them as equal partners in \nplanning and implementing care tailored to their needs is \na person-centred approach [24, 25], which is closely con -\nnected to the quality of care in terms of higher patient \nsatisfaction and better health outcomes [ 26]. Evaluating \npatient experiences among women living with lipoedema \nis crucial as previous research has indicated that women \nliving with this widely unrecognized disease often face \nseveral barriers in healthcare [ 27], being frequently mis -\nunderstood and stigmatized by healthcare providers [28–\n30]. Patient-reported experience measures (PREMs) can \nbe used to evaluate the quality of care from a patient’s \nperspective. The PREMs gathers valuable information \nabout patients’ experiences and satisfaction with health -\ncare services and provides insights into how patients per-\nceive and evaluate their care. The most common method \nfor measuring PREMs is through questionnaires designed \nto capture patients’ perspectives on various aspects of \ntheir care, including communication with healthcare pro-\nviders, coordination of care between providers and ser -\nvices, and general impressions of healthcare [31].\nIn the last decade, research on conservative and surgi -\ncal lipoedema treatments aiming to improve the quality \nof life has slowly increased. Still, evidence of their efficacy \nremains limited, including lipoedema patients’ experi -\nences of treating lipoedema and their satisfaction with \nhealthcare is sparse [32, 33]. In this study, the overall aim \nwas to investigate experiences of healthcare, self-care, \nand treatments among women with lipoedema. Specific \nKeywords Health, Health care quality, Access and evaluation, Lipoedema, Mixed-methods design, Patient experience, \nSelf-care, Surveys and questionnaires, Treatments, Women´s health\n\nPage 3 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \nresearch questions were: Which experiences do women \nwith lipoedema have of seeking care for lipoedema, and \nhow do they describe these experiences? Which self-care \napproaches and treatments do women with lipoedema \nuse, and how do they perceive their effects?\nMethods\nStudy design\nThis is a national study with a parallel mixed-methods \ndesign. Such design includes at least two parallel strands \nthat address aspects of the same research question, con -\nducted simultaneously but analyzed separately. A par -\nallel mixed-method design is useful for the purpose of \ncomplementary, i.e., to learn about multiple aspects of \nthe topic being studied and for validation or triangulation \nto determine whether various data sets support the over -\nall conclusion [ 34]. In this study, quantitative data from \nclosed questions and qualitative data from open-ended \nquestions were collected through an online survey con -\nducted between June and September 2021. Quantitative \ndata were collected to more comprehensively measure \nthe use and self-reported effects of self-care, lipoedema \ntreatments, and PREM among women with lipo -\nedema. Qualitative data were collected to gain a deeper \ninsight into women’s experiences when seeking care for \nlipoedema.\nMeasurements\nThe first part of the survey was developed in collabora -\ntion with a woman with lipoedema, a spouse of a woman \nwith lipoedema, and a physician from primary healthcare \nwith clinical expertise in lipoedema. This collaboration \naimed to enhance the question’s relevance by captur -\ning diverse perspectives. The survey began with ques -\ntions regarding sociodemographic (age, educational \nlevel, occupation), lipoedema characteristics (time point \nof disease onset; lipoedema type, stage, and diagnosis), \nand experiences of self-care and different lipoedema \ntreatments. After that, questions were asked on which \ntype of healthcare settings the women had sought care \nfor lipoedema and the healthcare setting for their most \nrecent lipoedema healthcare visit. Thereafter, a question-\nnaire was followed, wherein the women could rate on \na six-point Likert scale the use of sixteen prelisted self-\ncare strategies and lipoedema treatments. The overall \nquestion was ‘ Rate the effect you experienced from this \n(self-care/treatment)’ , with the answer options: 1 = I have \nnot used this (self-care/treatment) , 2 = Very poor effect , \n3 = Poor effect , 4 = Neither poor nor good effect , 5 = Good \neffect, and 6 = Very good effect.  The women could also \nrespond in free text if they had tried treatments other \nthan the pre-listed self-care approaches or lipoedema \ntreatments.\nThe second part of the survey included a validated \nquestionnaire from The Swedish National Patient Sur -\nvey (NPS), developed by The Swedish Association of \nLocal Authorities and Regions [ 35]. The NPS consists of \ngeneric PREM questionnaires for inpatient and outpa -\ntient settings that aim to capture patients’ experiences \nof healthcare. The NPS questionnaire used in this study \nincluded a basic item pool with 25 generic items and \nanother five items intended for primary care settings. For \neach item, participants were asked to rate their opinion/\nattitude on a five-point agreement scale ranging from \n1 = No, not at all (strongly disagree)  to 5 = Yes, completely \n(strongly agree). Each item also had an answer option of \nNo opinion/not relevant . The NPS items covered seven \ndimensions: Overall impression, Emotional support , Par-\nticipation and involvement , Respect and treatment , Con-\ntinuity and coordination , Information and knowledge , \nand Availability. Each dimension was scored from 0 to \n100, with a higher score indicating higher patient satis -\nfaction. Permission to use the NPS questionnaire in our \nlipoedema survey and associated manuals for NPS data \nanalysis was obtained from the Swedish Association of \nLocal Authorities and Regions. Reference data for a gen -\neral Swedish female population were obtained from the \nNPS survey for primary care through open access to the \nSwedish Association of Local Authorities and Regions \nwebsite [36].\nQualitative data were collected in the survey through \nself-constructed open-ended questions to explore how \nparticipants experienced healthcare in relation to each \nNPS dimension. The first question was: ‘Describe your \nexperience of the overall process of seeking care for lipo -\nedema’. Thereafter, seven questions were followed with \nthe same structure addressing the NPS dimensions. \nThe question was: ‘Describe your experience of (the NPS \ndimension) in healthcare encounters regarding your \nlipoedema.’.\nData collection procedure\nInformation about the study, an invitation to participate, \nan informed consent form, and a link to the survey were \nsent via email to all members (approximately 700) of all \nknown ( n = 5) Lipoedema Association groups across \nSweden. These groups included women with lipoedema, \nsupport members (e.g. family members), and healthcare \nproviders with a particular interest in lipoedema. How -\never, the inclusion criteria were female, aged 18 years \nor older, and diagnosed with lipoedema or having lipo -\nedema symptoms. The survey distribution (one email \nfollowed by two reminders) was conducted in coop -\neration with the board members of all Lipoedema Asso -\nciation groups. A total of 245 women with lipoedema \nparticipated in this survey. The data were collected \nbetween June and September 2021. Before full-scale data \n\nPage 4 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \ncollection, the survey was tested on 15 women volunteers \nwith lipoedema to identify potential logistical problems, \nassess the questionnaire’s adequacy, and estimate vari -\nability in responses. Ten women provided written feed -\nback on how the questionnaires were carried out, how \nmuch time was required to respond to the survey, and \nsuggestions on content and construction, which led to \nminor revisions for the final survey.\nStatistical analysis\nQuantitative data were analysed using the IBM SPSS Sta -\ntistical Package for Social Sciences version 27.0. Sociode -\nmographic data, lipoedema characteristics, healthcare \nvisits, and effects of self-care and lipoedema treatment \nwere compiled with descriptive statistics. The NPS ques -\ntionnaire generated data at the ordinal level, which were \nweighted, calculated, and averaged into dimensional \nscores according to a standardised NPS manual. Mean \ndifferences in the NPS dimensions between participants \nand the general female Swedish population were analysed \nwith inferential statistics using Student´s t-tests [37]. The \nsignificance level was set at p < 0.05. Cronbach’s alpha \nwas used to calculate item–scale correlations in the NPS \ndimensions, with results ranging from 0.78 to 0.96.\nQualitative analysis\nQualitative data (i.e., the answers from the open-ended \nquestions addressing the NPS dimensions) were ana -\nlyzed using thematic analysis according to Braun and \nClarke [ 38], an approach that was deemed appropri -\nate for this study as it allows for broad flexibility when \nexploring patterns in qualitative data. The software tool \nNVivo [39] version 14 was used to systematically handle \nthis large dataset containing 120-word pages, including \nbetween 185 and 202 free-text answers to each question. \nFirst, the data were read several times to familiarise with \nthe content, including making notes of things of inter -\nest and getting ideas that could be of interest to explore \nfurther in coding. In the next phase, the data was ana -\nlyzed as a whole, capturing 20 codes of the essential fea -\ntures. Thereafter, the codes were explored to identify the \nbroader patterns of meaning. This generated seven can -\ndidate themes. After identifying overlaps, the candidate \nthemes were combined and further developed, resulting \nin four refined, defined, and named themes. The process \ninvolved recurrently assessing the alignment between \nthe themes and the research question (i.e., the women’s \nexperiences of seeking care for lipoedema) to ensure \nthe findings remained relevant and meaningful. Despite \nthe sequential phases described above, the analysis was \na recursive process, with back-and-forth movement \nbetween different stages (reviewing themes, return -\ning to coding, and even data familiarization to ensure \nthe analysis remains accurate and meaningful), which is \ndescribed in the literature as reflexive thematic analysis \n[38].\nIntegration of the quantitative and qualitative inferences\nAfter separate analyses of the quantitative data from the \nNPS and the qualitative data from the free-text answers, \nthe inferences from the two strands were, following an \napproach by Tashakkori et al. [ 34], integrated by inter -\npreting and discussing them in relation to existing litera -\nture. Additionally, practical and theoretical implications \nwere drawn from the combined results.\nResults\nParticipants’ sociodemographic, lipoedema characteristics, \nand diagnosis\nA total of 245 women with lipoedema responded to the \nsurvey (Table 1). The median age was 50–59 years. Most \nwomen had an upper secondary or university education, \nand approximately 70% worked full- or part-time. The \nmost common age range at lipoedema onset was 12–17 \nyears. Over half of the participants had lipoedema stage \n3, and the most common lipoedema type (not presented \nin Table 1) reported among 58.7% of the women was hav-\ning a combination of lipoedema from the buttocks to the \nankles and arms.\nIn this sample, 76.2% of the women had a confirmed \nlipoedema diagnosis, and among them, one-third had \nsought care ten times or more for lipoedema symptoms \nbefore being diagnosed with lipoedema. Moreover, most \nwomen had received a diagnosis of lipoedema within \nthe last five years. It was about as common to have been \ndiagnosed with lipoedema by a physician as it was by a \nlymphatic therapist.\nAmong the 41 participants who had not received a \nlipoedema diagnosis (participants could respond to more \nthan one answer option), the most common answers were \nI have not found a healthcare professional with lipoedema \ncompetence (n = 26), followed by I do not know where or \nwhom to turn to  ( n = 17). Six participants answered not \nhaving received a diagnosis because ‘ I have not sought \ncare yet,’ and four responded ‘I do not require a diagnosis’ . \nSix women answered, ‘Other reason’.\nA total of 233 women responded to the free text \nregarding where they had first heard about lipoedema. \nThe most common answers were (merged into groups) \nin the media/social media  (43.8%) or from a friend/col -\nleague/relative (21.9%). Approximately one-fifth (18.8%) \nof the women had first heard of lipoedema from a health-\ncare provider. Other responses included googling/search-\ning on the Internet  (12.9%) and heard of lipoedema by a \npersonal trainer/masseur (2.6%).\nMost women (61.5%) had primarily sought care \nfor lipoedema in a public healthcare setting. Among \n\nPage 5 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \nVariable Frequency (n) Percentage\nAge (years) 245\n 18–39 16 6.5\n 40–49 57 23.3\n 50–59 97 39.6\n 60–69 45 18.4\n 70 and older 30 12.2\nEducational level 245\n Mandatory/High school 64 26.1\n Upper secondary/University 181 73.9\nOccupation1 244\n Employed (working full- or part-time) 170 69.7\n On sick leave (wholly or partially) 31 13.5\n Unemployed 9 3.7\n Studying 9 3.7\n Retired 48 19.7\n Other occupation 9 3.7\nAge at lipoedema onset (years) 245\n 11 or younger 19 7.8\n 12–17 99 40.4\n 18–29 51 20.8\n 30–39 26 10.6\n 40–49 24 9.8\n 50 or older 26 10.6\nLipoedema stage 245\n Stage 1 23 9.4\n Stage 2 81 33.0\n Stage 3 133 54.2\nWhether healthcare for lipoedema was sought 244\n Yes 216 88.5\n No 28 11.5\nWhether lipoedema diagnosis was confirmed 244\n Yes 186 76.2\n No 41 16.8\n Do not know 17 7.0\nAge at diagnosis (years) 186\n 12–29 3 1.6\n 30–39 30 16.1\n 40–49 52 28.0\n 50–59 65 34.9\n 60 or older 36 19.4\nDuration of lipoedema diagnosis 186\n Less than one year 23 12.4\n 1–2 years 36 19.4\n 3–5 years 76 40.9\n 6–9 years 24 12.9\n 10–19 years 12 6.5\n 20–29 years 4 2.2\n 30 years or longer 11 5.9\nHealthcare visits before lipoedema diagnosis 186\n Diagnosed at first health care visit 30 16.1\n 1–2 25 13.4\n 3–6 44 23.7\n 7–9 23 12.4\nTable 1 Participants’ sociodemographic, lipoedema characteristics and diagnosis\n\nPage 6 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \nparticipants, most had sought care for lipoedema from \na primary care physician (73.5%), and the last healthcare \nvisit for lipoedema had occurred in outpatient healthcare, \nof which 95% had been in primary care and 5% in special-\nized patient clinics (i.e., private liposuction clinics).\nThe use and self-reported effects of self-care and \nlipoedema treatments\nMost women had tried several strategies to treat their \nlipoedema symptoms and health problems, and 60% \nreported using 4–8 lipoedema treatments and self-\ncare approaches. Figure  1 shows the percentages of use \nand rated effects of different self-care approaches and \nlipoedema treatments. Most women performed low-\nintensity exercise, and approximately half rated it as \neffective (good or very good). Four of five women used \ncompression garments; of those, approximately two-\nthirds reported good or very good effects. Lymphatic \ntherapy performed by a lymphatic therapist was rated \nas having a better effect than doing manual lymph \ndrainage as self-care. One-fourth of the women had \nundergone treatment for lipoedema symptoms with \nintermittent pneumatic compression devices. Among \nthem, the majority rated the effect as good or very \ngood. In this study sample, 20% had undergone liposuc -\ntion; all except one participant reported good or very \nFig. 1 Use and self-reported effect of lipoedema treatments and self-care among participants (n = 244)\n \nVariable Frequency (n) Percentage\n 10–19 26 14.0\n 20 visits or more 38 20.4\nHealthcare professional making the diagnosis 185\n Lymphatic therapist 77 41.6\n Physician in primary care 42 22.7\nPhysician in specialist care 37 20\n Nurse 11 5.9\n Physiotherapist 10 5.4\n Occupational therapist 1 0.5\n Other healthcare profession 7 3.8\n1 30 participants chose more than one response option here\nTable 1 (continued) \n\nPage 7 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \ngood results. In addition, 42 participants described (in \nfree-text answers) the use of lipoedema treatments or \nself-care other than those pre-listed. The most common \nanswers were lymphatic massage, a gluten-free and low-\ncarbohydrate diet, and food supplements (magnesium, \nD-vitamin). Vibration massages with infrared therapy, \nexercise with a personal trainer, elevating the legs, and \nusing an infrared sauna were also frequently mentioned.\nExperiences of healthcare\nWomen with lipoedema scored significantly lower on \nsatisfaction with care in all NPS dimensions than did \nthe general Swedish female population (Fig.  2). The NPS \nscores ranged from 48 to 69 points for women with lipo -\nedema and from 71 to 85 points for the general Swedish \nfemale population. In this study sample, the lowest score \n(48 points) was found for Overall impression , reflecting \nlower patient satisfaction in terms of expectation of care, \nperceived efficiency, being cared for, and feeling safe. The \ndimension of Emotional support  relates to the experi -\nence of healthcare providers being available, responsive, \nand supportive of patients’ worries, anxiety, pain, or fear. \nIn this dimension, the participants scored 51 points, \ncompared with 76 points in the general female popula -\ntion. Although the highest score among women with \nlipoedema (69 points) was found in the dimension of \nRespect and treatment , which includes parameters such \nas compassion, commitment, and care for the patient and \nindividual needs, there was still a difference of 16 points, \nas this dimension was also found to have the highest \nscore in the general female population (85 points). More-\nover, women with lipoedema scored 22 points lower than \nthe general population for Information and knowledge.  \nThis dimension measures how well the patient feels that \nhealthcare providers can inform and communicate in a \nwell-adapted manner, obtain answers to questions, and \nreceive information about treatments, potential side \neffects, and warning signs to pay attention to.\nThe analysis of the qualitative data addressing which \nexperiences women with lipoedema have of seeking \ncare for lipoedema generated four themes: A lonely and \ndemanding journey in the healthcare system , An uncer -\ntainty of and inconsistency in available healthcare, A bur-\nden of being unheard and disrespected in healthcare , and \nThe impact of lack of knowledge in care.\nA lonely and demanding journey in the healthcare system\nOverall, the women expressed profound dissatisfaction \nwith lipoedema care. From the perspective of continuity \nand coordination, the healthcare system was described \nas challenging, in which no provider took overall respon -\nsibility. In general, healthcare providers were found to \nlack awareness of what to do and how to care for these \nwomen. Moreover, the women felt that healthcare \nFig. 2 The NPS dimension scores for women who had sought care for lipoedema 1 (n = 209) and a general Swedish female population ( n = 52,517) in \nprimary. care settings2. 1In this group, seven of the women did not respond to the NPS questionnaire. 2 Significant differences in mean scores between \nthe groups in all seven dimensions = p < 0.001\n \n\nPage 8 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \nproviders did not collaborate with other clinics. The \nwomen shared experiences of feeling isolated in their \nefforts to navigate the healthcare system. Without a coor-\ndinated care plan, the women described their journey in \ncare as a lonely and demanding struggle with extensive \ndelays, a lack of referrals, and insufficient feedback from \nhealthcare providers. A woman described it as follows:\n‘There is no collaboration or coordination. No refer-\nrals. You must search for information about every -\nthing and find all the contacts yourself’ .\nParticipant no 29.\nEven if some of the women had met providers who dem -\nonstrated a willingness to help, the women were simul -\ntaneously informed that the providers were unable to \nact, as there were no guidelines on which care to offer or \nwhom to refer to. A woman described this as:\n‘My doctor has done all she can—it is not her fault \nthat specialist (lipoedema) clinics do not exist’ .\nParticipant no 101.\nFurthermore, low patient satisfaction regarding par -\nticipation and involvement in care-related matters was \nexpressed as a sense of loneliness and isolation. The lack \nof collaboration between healthcare providers left the \nwomen feeling abandoned and shut out of their needed \ncare. This lack of coordination was described as being let \ndown:\n‘The Swedish healthcare has let me down…my qual -\nity of life just worsens, but no one cares’ .\nParticipant no 98.\nAn uncertainty of and inconsistency in available healthcare\nThe availability of lipoedema care was described as very \nlimited and unequal, and depended mainly on the pri -\nvate economy, meaning if one could pay for care in the \nprivate sector. Even though overall, there were high bar -\nriers to public care, there were also regional differences, \nand a few regions offered some support such as referral \nto a dietician, water exercise, and the prescription of per -\nsonalised compression garments. In general, the women \ndescribed lipoedema care as unequal, and the few women \nwith access to lipoedema expertise in public health -\ncare described it as fortuitous. A woman described it as \nfollows:\n‘It was a lucky coincidence that I came to a doc -\ntor who could give me the correct diagnosis after so \nmany years of being misdiagnosed… ’ .\nParticipant no 26.\nHaving access to good care was described as an uncertain \nand often ever-shifting process, as the women suddenly \ncould be left without care when, for example, they or a \nhealthcare provider moved or a healthcare center with \nlipoedema expertise closed down. This was described by \na woman as this:\n‘A physiotherapist in public care had the knowledge, \nbut I only was there once because she quit working \nthere. After that, I haven’t received any other help’ .\nParticipant no 92.\nA burden of being unheard and disrespected in healthcare\nRegarding experiences from the dimension of respect \nand treatment in healthcare encounters, the women \ndescribed a dark picture characterised by a long and often \nunsuccessful struggle to be heard and acknowledged for \ntheir health problems and needs. Their attempts to con -\nvince the provider that something was wrong and to be \nheard were described as useless. The women felt that \nthey were unheard, and that providers instead blamed \nthem for being overweight and questioned them if they \nwere actually telling the truth about their lifestyle behav -\niour. These experiences were closely related to the dimen-\nsion of not receiving emotional support for worries and \npain, as they often encountered an attitude of ignorance \nand a lack of interest. Such experiences was described by \na woman in the following way:\n‘In every contact with the doctor at the healthcare \ncentre, she dismissed my problems with the same \ncomment: “It can’t be like that” . She thought I was \nmaking it all up’ .\nParticipant no 29.\nThe care providers’ preconception that the women them-\nselves were responsible for their weight gain and health \nproblems was made without being open to whether \nstrategies for losing weight had been attempted before \nor why they eventually did not work. The women stated \nthat their health problems, medical history, and efforts \nto manage their health problems were underestimated. A \nwoman described it as follows:\n‘…they see me as a person with very poor self-dis -\ncipline who gobbles up food and doesn’t exercise \nbecause I’m lazy. It is so far from the person I am \nand has been’ .\nParticipant no 124.\nThe experiences of being met disrespectfully and of \nlacking support affected the women emotionally, caus -\ning distress and leaving them feeling disregarded and \n\nPage 9 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \nunsupported. Moreover, the dismissive attitudes of pro -\nviders contributed to undermining these women’s trust \nand confidence in healthcare and made them ques -\ntion the value of seeking care in the future. As a woman \ndescribed:\n‘I have been laughed at in the primary health care \ncentre and told that lipoedema does not exist. I will \nnever go back there again and be humiliated’ .\nParticipant no 9.\nThe impact of lack of knowledge in healthcare\nThe pervading lack of information and knowledge of \nlipoedema in public care decreased the women’s oppor -\ntunities to receive adequate advice on how to manage \ntheir health problems and on different options for suit -\nable treatments. A woman described it as follows:\n‘Unfortunately, no one in regular healthcare has the \nknowledge. There are probably exceptions, but I have \nnot met them’ .\nParticipant no 92.\nMany women experienced prolonged delays in diagnosis, \nmisdiagnoses, and inadequate assessments of their health \nconditions. Moreover, the women reported that they did \nnot receive satisfactory answers to questions on how to \ncope with their health problems or information about \ndifferent treatment options that could be beneficial. Due \nto healthcare providers’ limited awareness of lipoedema, \nthese women were forced to seek information about \ntheir symptoms independently. When they attempted to \nshare their knowledge about lipoedema during health -\ncare encounters, it frequently led to miscommunication, \ncreating tension and misunderstanding. Healthcare pro -\nviders often dismissed the information or questioned \nwhether lipoedema was legitimate, casting doubt on the \ndiagnosis. A woman revealed:\n‘The next doctor I sought help from started googling \nand stated that lipoedema is a wastebasket diagno -\nsis that I should watch out for. [They] compared it \nwith fibromyalgia’ .\nParticipant no 70.\nHowever, some providers attempted to find out more \nby conducting various physical examinations and taking \nblood tests. However, when a reasonable medical expla -\nnation for the symptoms could not be determined, they \nnormalised the women’s problems. As expressed by a \nwoman:\n‘The tests showed that I was perfectly healthy. After \nsome time, the pain got even worse, and I went to \nanother healthcare centre. Same story’ .\nParticipant no 98.\nFor the women, this meant that their care needs were \noverlooked and disregarded. Therefore, despite disease \nprogression, they continued to face obstacles in access -\ning appropriate information from healthcare provid -\ners regarding how to manage their health issues and the \nprognosis of their future health.\nDiscussion\nTo the best of our knowledge, this is the first national \nstudy involving quantitative and qualitative data on expe-\nriences of healthcare, self-care, and treatments among \nwomen with lipoedema. The key findings of this study \nwere that women with lipoedema often experienced a \ndelay in lipoedema diagnosis spanning decades, com -\nmonly preceded by numerous healthcare visits. Com -\npared to a general female population, women with \nlipoedema reported significantly lower satisfaction with \nhealthcare in all dimensions. Most of the women treated, \nwith various effects, their lipoedema with different self-\ncare approaches. Even though lipoedema treatments \nperformed in healthcare were perceived as the most \neffective, they were used less.\nThe first research question in this study aimed to \naddress the women’s experiences of seeking care for lipo-\nedema. Following the mixed method design, the infer -\nences from the two strands, comprising of data from the \nNPS questionnaire and free-text answers related to the \nNPS dimension, are integrated by discussing them in \nrelation to each other and relevant existing literature.\nTo begin, study participants described the availability \nof lipoedema care as low, unequal, and unpredictable, \ndepending on either being lucky to have met the ‘right \ndoctor’ or facing a general lack of awareness of lipoedema \namong providers. Also, the absence of guidelines for lipo-\nedema treatments in public healthcare was pointed out \nas a barrier to availability. Such obstacles can be dis -\ncussed in relation to a model of symbolic violence in \nhealthcare, where women with chronic diseases are mar -\nginalized through non-recognition (providers deny the \ncondition as a chronic disease), institutionalized medical \nun-care (no providers take care of the patient), scientific \nun-care (waiting for more evidence), or con-descension \n(lack of consensus around the disease) [ 40]. The model \nof symbolic violence can contribute to the understanding \nof why lipoedema remains a “hidden women’s disease” \nand is not being paid attention to in the broader medical \ncommunity or society at large. Regarding lipoedema, this \nmeans that without a proper acknowledgment of lipo -\nedema as a chronic disease requiring qualified care, many \n\nPage 10 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \nwomen will continue to be misdiagnosed and left without \nappropriate medical support.\nThe dissatisfaction regarding care availability is closely \nconnected to the women’s low patient satisfaction in \nthe NPS dimensions of continuity and coordination in \nhealthcare. Many of the undiagnosed women reported \nthat they lacked guidance on where or from whom to \nseek help. These results align with how the women \ndescribed repetitive unsuccessful efforts to navigate the \nsystem independently and that they felt left alone. Previ -\nous studies have revealed that planning and conducting \ntreatments in interdisciplinary teams with women who \nsuffer from other chronic diseases that have complex \netiology and multiple comorbidities like lipoedema has \nshown promising results in terms of improved func -\ntional quality of life and reduced chronic pain [ 41– 43]. \nHence, the importance of a holistic approach in address -\ning the diverse and complex healthcare needs of women \nwith lipoedema cannot be overstated. Collaborative \nefforts among healthcare providers, including physicians, \nnurses, lymphatic therapists, physiotherapists, dieticians, \npsychologists, and other specialists, may provide more \nintegrated healthcare to ensure women receive the best \npossible care. While the United States, Great Britain, the \nNetherlands and Germany have provided guidelines that \ninclude recommendations for the diagnostic criteria and \ntreatments for lipoedema [ 2, 17, 21, 44], the absence of \npublished guidelines in Sweden remains an unmet need \nto improve and expand care for affected women [ 45, 46]. \nFurthermore, an implication for clinical practice is the \ncreation of individual care plans for women with lipo -\nedema to address their specific health needs. This may be \nbecause each woman receives support and suitable treat -\nment based on her unique medical history and health \nstatus. Such an approach could also empower women \nand help them maintain an active role in their health by \nproviding information and education on optimising their \nhealth and well-being [47].\nAnother key finding of this study was the women’s \nexperiences in healthcare, described as a lonely and \nexhausting struggle that often extended over many years, \ncolored by disrespect and ignorance from healthcare pro-\nviders. The low score in the NPS dimensions of respect \nand treatments, and emotional support corresponded \nwith the theme derived from the qualitative data—the \nburden of being unheard and disrespected in healthcare. \nThe women’s experiences can be shed in the light of pre-\nvious research, showing that female sex, large body size, \nand chronic pain are factors that constitute bias and put \nwomen in unfavourable positions in healthcare encoun -\nters, wherein healthcare providers tend to ignore or min -\nimize symptom severity or attribute it to a psychological \netiology [48, 49]. Gender bias, consolidated by andronor -\nmativity in healthcare, is grounded in stereotypes that \nwomen are fragile and overemotional, and can affect both \ncare and health outcomes for women, wherein women’s \npain and other physical health problems are often attrib -\nuted to psychosomatic causes [ 50– 52]. Moreover, the \nperceptions of weight bias among healthcare provid -\ners can negatively influence the patient’s experiences \nand engagement with healthcare services [ 53]. In this \nstudy, several women reported that healthcare provid -\ners tended to attribute their health problems to over -\nweight and that they were met with wrong assumptions \naccording to their weight gain. Overall, such biases can \nconstitute barriers for women with chronic conditions \nwhen managing health problems and seeking healthcare \nand have also previously been described among women \nwith lipoedema in diverse international contexts [ 29, 30]. \nTo provide more equitable care for women with lipo -\nedema, such biases must be recognized and addressed \nin a healthcare setting. One way to do this is to provide \nhealthcare providers with ongoing training on the impact \nof care bias [54].\nThe lack of awareness of lipoedema among health -\ncare providers was reflected in low scores on the NPS \ndimension of knowledge and information. The women \ndescribed this as the main reason for not receiving a \ndiagnosis or adequate information on their health condi -\ntion. The qualitative data generated a theme- the impact \nof lack of knowledge in care- pointing out the women’s \nexperiences with healthcare providers failing to explain \nwomen’s health problems. It has been previously known \nthat medically unexplained symptoms may strain the \nrelationship between the patient and provider, contrib -\nuting to mutual feelings of being stuck, lack of trust, \nand a sense of helplessness [ 55]. A study claims that for \nhealthcare providers, patients with diffuse symptoms \nthat are difficult to diagnose and treat constitute appar -\nent deviations and are described as difficult and complex \n[50]. Another study concludes that, although health -\ncare providers recognize the importance of an adequate \nexplanation or diagnosis of unexplained symptoms \nand fear neglecting the patient’s symptoms and miss -\ning underlying diseases, they face difficulties explain -\ning the nature of the symptoms during their encounters \nwith these patients [56, 57]. Instead, healthcare providers \noften use different approaches to explain the symptoms \nto the patient, for example, telling the patient that there \nis no disease or using metaphors referring to psychologi -\ncal or social problems [ 57]. In the context of lipoedema, \neducating healthcare providers about lipoedema is of \nutmost importance. Moreover, it is essential for provid -\ners to listen actively, acknowledge and address the indi -\nvidual needs of women with lipoedema, and collaborate \nintra-disciplinarily.\nThe other research question in this study was to exam -\nine which self-care approaches and lipoedema treatments \n\nPage 11 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \nthe women had used and how they perceived their \neffects. Important to acknowledge is that many women \nreported that they had sought care for lipoedema mul -\ntiple times before being diagnosed, indicating that they \nhad lived a considerably long part of their adult lives \nwithout access to well-suited treatments. As such, many \nwomen had experiences of using several strategies to \ntreat their health problems independently, and the most \ncommon were those that could be performed at home. \nAlthough most women performed low-intensity exercise, \nonly approximately half reported positive effects, which \naligns with previous research findings [ 58]. This can be \nexplained by the fact that many women with lipoedema \nexperience daily pain and limitations in physical func -\ntion [10]. The disproportionate distribution of lipoedema \ntissue combined with hypermobile joints can negatively \naffect musculoskeletal health, including orthopaedic \nconditions such as valgus knee, ankle pronation, gait \nalterations, arthritis, and knee replacement [ 2]. There-\nfore, individually adapted physical therapy regimens, \nwhich should be started slowly and advanced based on \nindividual tolerance, are recommended and have shown \npromising results regarding pain and quality of life in \nearlier stages [ 2]. Another key finding in this study was \nthat although the perceived effects of different self-care \napproaches and treatments varied, treatments performed \nby healthcare providers, such as manual lymphatic drain-\nage and liposuction, were generally perceived to have the \nbest effect. These findings could be attributed to the fact \nthat co-creating more tailored treatments in healthcare \nfor patients with multi-complex care needs is essential \nfor achieving better health outcomes [ 59]. Importantly, \nself-care should not be underestimated as it plays a cru -\ncial role in managing lipoedema. Hence, healthcare pro -\nviders should actively encourage women with lipoedema \nto adopt or maintain a healthy lifestyle, as it enhances \ntheir ability to manage symptoms, improve mobility, \nand increase quality of life [ 60]. This can be achieved \nby offering patient education, individualized care plans, \nand emotional support, which, in turn, not only contrib -\nute to enhancing the women’s overall well-being but also \nfoster a collaborative patient-provider partnership [ 2, \n60]. This study also revealed that more than 80% of the \nwomen used compression garments, and the vast major -\nity reported a good or very good effect. It should be \nacknowledged that this study did not explore the specific \neffects of different treatments on certain health issues, \nsuch as pain, leg heaviness, or mobility. However, similar \ndata from a previous study has shown that women with \nlipoedema reported that using compression garments \nwas beneficial in reducing pain, supporting tissue, and \nimproving overall comfort [ 61]. In this study, one-fifth \nof the women had undergone liposuction, a treatment \nshown to have the highest proportion of reports of very \ngood effects. Although randomized controlled lipoedema \ntrials on liposuction are currently lacking, a previous \nstudy revealed positive results on the quality of life and \nhealth status of patients with lipoedema who underwent \nthis treatment [62].\nConsidering the findings of this study, it is evident \nthat women with lipoedema have challenging journeys \nin healthcare, characterized by repeated misdiagnoses, \ndisrespectful reception, and low or no access to proper \ncare. This highlights the need for further research and \nintervention in this area. It is recommended to provide \ncomprehensive education on lipoedema to healthcare \nproviders along with training in addressing biases in care. \nFurthermore, as lipoedema is a complex disease that \naffects one’s physical, mental, and social life, the authors \nof this study suggest developing clinical guidelines to \ntreat and support women with lipoedema. Furthermore, \nfuture research should focus on the development and \neffectiveness of healthcare interventions such as different \nlipoedema treatments, patient education, and self-man -\nagement, as well as on studying various dimensions of \nthe psychosocial impact of living with lipoedema. Finally, \nthis study was conducted in the Swedish context, and it \nshould be considered that healthcare systems, cultural \nnorms, and access to care vary significantly across coun -\ntries. To enhance our understanding of this topic, it is \nadvisable to undertake future investigations encompass -\ning women with lipoedema from diverse populations, \nembrace cross-cultural comparisons, and foster interna -\ntional collaboration in lipoedema research.\nThis study has some limitations. Due to non-existent \nnational public authority registers or other Swedish \nlipoedema data sources, participants were exclusively \nrecruited from Lipoedema Association groups, which \nmay have affected the external validity of these findings. \nMoreover, information on how many of the 700 mem -\nbers were eligible for inclusion was unavailable, nor \ncould it be confirmed how many of the members actu -\nally received the email/study invitation. Therefore, the \nproportion of confirmed lipoedema diagnoses among \nthe participants in this study is probably not representa -\ntive of the general lipoedema population. There may also \nhave been selection bias because we had no information \nabout those who did not participate, and one in four of \nthe participants was self-diagnosed. Moreover, this study \ndid not compare the women in groups based on socio -\neconomic background factors, and the high proportion \nof educated participants may have skewed the results. \nAll data were self-reported, indicating that there might \nhave been recall bias among participants in questions on \nlipoedema characteristics and those on their retrospec -\ntive experiences of the effectiveness of lipoedema treat -\nments. Furthermore, the data collection was conducted \nthrough a survey, enabling answers from a large number \n\nPage 12 of 14\nFalck et al. BMC Women's Health          (2025) 25:171 \nof participants and enhancing a broad variation of experi-\nences. The prominence of collecting data through written \ntext in qualitative research lies in its time efficiency and \npracticality for participants [63]. Although the qualitative \ndata was comprehensive, one important consideration is \nthat written text, compared to interviews, is limited by \nthe risk of superficial answers and the lack of contextual \ndepth [63]. However, after evaluating its depth, variation, \nand contextual details, the data in this study were consid-\nered rich and descriptive, containing detailed responses \nand diverse perspectives. Moreover, a key strength was \nthe mixed-methods approach, where quantitative and \nqualitative data complemented each other, providing a \ndeeper understanding of the research questions. This \ntype of triangulation, which refers to using multiple \nmethods and data sources [34], contributed to improving \nthe study’s credibility and robustness.\nConclusions\nThis study shows that women with lipoedema make great \nefforts and use several strategies to manage their health \nproblems with little or no support from the healthcare \nsystem. The women’s dissatisfaction with care and the \nlow use of lipoedema treatments performed by health -\ncare providers were primarily described as a result of \npervasive low knowledge of lipoedema, repeated misdi -\nagnoses, fat-shaming, and a lack of recommendations for \nmedical treatments. Therefore, there is an urgent need to \nidentify lipoedema in women to enhance timely diagno -\nsis. This should be done by educating healthcare provid -\ners regarding lipoedema and offering them continuous \ntraining on how to address biases in care. Moreover, to \nmeet the women’s individual needs, provide them with \nhigh-quality care, and improve their quality of life, it is \ncritical to develop clinical guidelines for lipoedema, \nincluding interdisciplinary collaboration and strategies.\nAbbreviations\nPREMs  Patient Reported Experiences Measurements\nNPS  The Swedish National Patient Survey\nAcknowledgements\nWe express our appreciation to Marita Melin, Tomas Haag (Patientföreningen \nLymf Region Jönköping), and Elin Ambjörnsson (Region Jönköping Län) for \ntheir cooperation in the development of the survey used in this study. We \nalso thank the board members of the Lipoedema Associations in Sweden, \nincluding Margareta Haag (Svenska Ödemförbundet), Ulrika Fransson (Lymf \nKalmar län), and Gunilla Jansson (Lymf- och lipödemföreningen Stockholms \nlän) for their collaboration and dedication in organising the survey logistics.\nAuthor contributions\nAll authors, Johanna Falck, Annette Nygårdh, Bo Rolander, Lise-Lotte Jonasson, \nJan Mårtensson, have substantially contributed to this article and met \nthe International Committee of Medical Journal Editors (ICMJE) criteria for \nauthorship. All authors have reviewed the manuscript.\nFunding\nOpen access funding provided by Jönköping University.\nThis study is part of a Ph.D. thesis provided by the School of Health and \nWelfare, Jönköping University, Sweden. No external funding was received for \nit.\nData availability\n The datasets generated and analyzed during this study are not publicly \navailable due to ethical restrictions. For further information related to this \ndataset, please contact the corresponding author.\nDeclarations\nEthics approval and consent to participate\nThe ethical considerations followed the principles of the Declaration of \nHelsinki (World Medical Association, 2013). All participants received written \ninformation regarding the study, the nature of voluntary participation, \nhandling and confidentiality of the data, and how the study results would be \npresented. Participants were informed that they, at any time, could leave the \nstudy without requiring justification. If responding to the survey caused any \nharm or discomfort, the participants could contact and receive support from \na named physician (not involved in this research project) with knowledge \nabout lipoedema. Informed consent was obtained from all the participants. \nThis study was approved by the Swedish Ethical Review Authority (Approval \nID). 2021 − 01879.\nConsent for publication\nNot applicable.\nCompeting interests\nThe authors declare no competing interests.\nAuthor details\n1Department of Nursing Science, School of Health and Welfare, \nJönköping University, Jönköping, Sweden\n2Faculty of Caring Science, Work Life and Social Welfare, University of \nBorås, Borås, Sweden\n3Academy for Health and Care, Futurum, Jönköping County Council, \nJönköping, Sweden\n4Department of Behavioural Science and Social Work, School of Health \nSciences, Jönköping University, Jönköping, Sweden\nReceived: 4 December 2023 / Accepted: 1 April 2025\nReferences\n1. Ernst AM, Bauer H, Bauer H-C, Steiner M, Malfertheiner A, Lipp A-T. Lipedema \nresearch;quo vadis?? J Pers Med. 2023;13(1):98.  h t t p  s : /  / d o i  . o  r g /  1 0 .  3 3 9 0  / j  p m 1 \n3 0 1 0 0 9 8.\n2. 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