Dealing with lipoedema: women’s experiences of healthcare, self-care, and treatments—a mixed-methods study

Background Lipoedema is a loose connective tissue disease primarily affecting women characterized by an abnormal build-up of painful fat in the legs and arms. In healthcare, lipoedema is often confused with obesity, and today, diagnostic tools and standardized guidelines for adequate treatments are lacking. Still, research on how affected women manage their health problems and whether they are satisfied with their care remains sparse. Therefore, this study aimed to contribute knowledge on healthcare experiences, and their use and self-reported effects of self-care and treatments among women with lipoedema.

This national study, with a mixed-methods design, involved 245 women with lipoedema, recruited from all Lipoedema Association groups across Sweden. Data were collected between June and September 2021 through an online survey that included closed- and open-ended questions on self-care, lipoedema treatment, patient satisfaction, and healthcare experiences. Data were analysed using descriptive and inferential statistics, and qualitative reflexive thematic analysis.

The results showed a delay in diagnosis spanning decades, often preceded by numerous healthcare visits. Many women attempted to cope with their health problems using various self-care approaches. However, lipoedema treatments performed by healthcare providers were deemed the most effective. Overall, the women reported significantly low satisfaction with healthcare. The lowest score, 48 points out of 100, was found in the overall impression of offered care, reflecting perceived inefficiency and unmet expectations. Compared to a general Swedish female population, the most significant gaps were found in the dimensions of information and knowledge, and emotional support, 22 and 25 points lower, respectively. The women described their experiences in healthcare as a challenging and isolated journey. Four themes were generated: A lonely and demanding journey in the healthcare system; An uncertainty of and inconsistency in available healthcare; A burden of being unheard and disrespected in healthcare; and The impact of lack of knowledge in healthcare.

Seeking care for lipoedema is a long and burdensome journey with limited access to tailored care. Many women make significant efforts to manage their health problems independently. This emphasizes a need for timely lipoedema diagnosis, improved support, and better access to effective treatments. Dealing with lipoedema: women’s experiences of healthcare, self-care, and treatments—a mixed-methods study Johanna Falck1*, Annette Nygårdh2, Bo Rolander3,4, Lise-Lotte Jonasson1 and Jan Mårtensson1 Page 2 of 14 Falck et al. BMC Women's Health (2025) 25:171

Lipoedema is a loose connective (adipose) tissue disease that almost exclusively affects women and manifests as an abnormal accumulation of painful fat, mainly in the but - tocks, lower extremities, and arms [ 1, 2]. Disease onset mainly occurs during periods of hormonal change such as puberty, pregnancy, and menopause. The aetiology of lipoedema is not fully known; however, the female hor - mone oestrogen, is believed to play a role [ 3, 4]. Another contributing factor appears to be heredity, as there is often a (female) family history of lipoedema [5– 7]. Lipoedema is characterised by nodular and painful fat, easy bruising, numbness, swelling, and heaviness [ 2] caused by inflammation, fibrosis, and microangiopathy in adipose tissue [ 8]. Lipoedema mainly affects the lower extremities and sometimes the upper arms. Hands and feet are typically spared [ 2]. The disease onset primarily occurs during puberty and causes health problems, limi - tations in daily activities, and lower health-related quality of life, which tends to worsen as the disease progresses [9– 11]. Lipoedema is classified into five different types depend- ing on its location in the body [ 2]. Type 1 affects the but- tocks, Type 2 affects the buttocks and thighs, Type 3 extends to the calves, Type 4 involves the arms, and Type 5 affects only the lower legs. Lipoedema is also classified according to disease progression. Stage 1 refers to regular skin but enlarged fat tissue; Stage 2 is uneven skin with indentations in the fat tissue and larger mounds of fat tissue (lipomas) and Stage 3 features large tissue extru - sions causing deformations [ 2]. The clinical presentation of lipoedema varies; however, most women experience gradual progression over time [ 7, 12]. Diagnosis is based on medical history and a comprehensive physical exami - nation [2, 7]. Currently, there is no cure for lipoedema, and guide - lines on how to treat it are generally lacking. However, some approaches and treatments have shown promising

in reducing lipoedema symptoms, improving the quality of life, and preventing disease progression [ 2]. Offering women with lipoedema educational and psy - chosocial support to promote self-care - that is, interven - tions that people can improve upon to maintain health or cope with health problems with or without support from healthcare providers [ 13, 14] - is essential [ 2]. Although weight loss has little or no effect on lipoedema, weight management through a healthy diet and physical activ - ity is important for reducing the risk of obesity and obe - sity-related conditions and improving mobility [ 2, 15]. Physical exercise should be individualised, and women with severely impaired mobility should be encouraged to seek physiotherapy advice for an individual training plan. Conservative treatment involves individually adapted static compression garments, active pneumatic compres - sion devices, manual lymphatic drainage, and deep tissue therapy to reduce fibrosis, all of which reduce discomfort and relieve aches and pain by providing containment and tissue support [ 16, 17]. Liposuction is a surgical option that reduces pain, bruising, and swelling and improves mobility by treating adipose tissue enlargement [ 18– 20]. Given the variations in disease progression and clinical presentation, it is essential to regularly assess function - ing, limitations in daily activities, and health-related quality of life to address individual needs and optimize treatment strategies [ 21]. Furthermore, as lipoedema often occurs with multiple and diverse comorbidities and health problems such as obesity, hypothyroidism, migraine, fibromyalgia, allergies, and sleep disorders [ 10, 22], an interdisciplinary approach should be pursued [23]. An important aspect of care is involving and engaging patients in their care and seeing them as equal partners in planning and implementing care tailored to their needs is a person-centred approach [24, 25], which is closely con - nected to the quality of care in terms of higher patient satisfaction and better health outcomes [ 26]. Evaluating patient experiences among women living with lipoedema is crucial as previous research has indicated that women living with this widely unrecognized disease often face several barriers in healthcare [ 27], being frequently mis - understood and stigmatized by healthcare providers [28– 30]. Patient-reported experience measures (PREMs) can be used to evaluate the quality of care from a patient’s perspective. The PREMs gathers valuable information about patients’ experiences and satisfaction with health - care services and provides insights into how patients per- ceive and evaluate their care. The most common method for measuring PREMs is through questionnaires designed to capture patients’ perspectives on various aspects of their care, including communication with healthcare pro- viders, coordination of care between providers and ser - vices, and general impressions of healthcare [31]. In the last decade, research on conservative and surgi - cal lipoedema treatments aiming to improve the quality of life has slowly increased. Still, evidence of their efficacy remains limited, including lipoedema patients’ experi - ences of treating lipoedema and their satisfaction with healthcare is sparse [32, 33]. In this study, the overall aim was to investigate experiences of healthcare, self-care, and treatments among women with lipoedema. Specific

Health, Health care quality, Access and evaluation, Lipoedema, Mixed-methods design, Patient experience, Self-care, Surveys and questionnaires, Treatments, Women´s health Page 3 of 14 Falck et al. BMC Women's Health (2025) 25:171 research questions were: Which experiences do women with lipoedema have of seeking care for lipoedema, and how do they describe these experiences? Which self-care approaches and treatments do women with lipoedema use, and how do they perceive their effects?

Study design This is a national study with a parallel mixed-methods design. Such design includes at least two parallel strands that address aspects of the same research question, con - ducted simultaneously but analyzed separately. A par - allel mixed-method design is useful for the purpose of complementary, i.e., to learn about multiple aspects of the topic being studied and for validation or triangulation to determine whether various data sets support the over - all conclusion [ 34]. In this study, quantitative data from closed questions and qualitative data from open-ended questions were collected through an online survey con - ducted between June and September 2021. Quantitative data were collected to more comprehensively measure the use and self-reported effects of self-care, lipoedema treatments, and PREM among women with lipo - edema. Qualitative data were collected to gain a deeper insight into women’s experiences when seeking care for lipoedema. Measurements The first part of the survey was developed in collabora - tion with a woman with lipoedema, a spouse of a woman with lipoedema, and a physician from primary healthcare with clinical expertise in lipoedema. This collaboration aimed to enhance the question’s relevance by captur - ing diverse perspectives. The survey began with ques - tions regarding sociodemographic (age, educational level, occupation), lipoedema characteristics (time point of disease onset; lipoedema type, stage, and diagnosis), and experiences of self-care and different lipoedema treatments. After that, questions were asked on which type of healthcare settings the women had sought care for lipoedema and the healthcare setting for their most recent lipoedema healthcare visit. Thereafter, a question- naire was followed, wherein the women could rate on a six-point Likert scale the use of sixteen prelisted self- care strategies and lipoedema treatments. The overall question was ‘ Rate the effect you experienced from this (self-care/treatment)’ , with the answer options: 1 = I have not used this (self-care/treatment) , 2 = Very poor effect , 3 = Poor effect , 4 = Neither poor nor good effect , 5 = Good effect, and 6 = Very good effect. The women could also respond in free text if they had tried treatments other than the pre-listed self-care approaches or lipoedema treatments. The second part of the survey included a validated questionnaire from The Swedish National Patient Sur - vey (NPS), developed by The Swedish Association of Local Authorities and Regions [ 35]. The NPS consists of generic PREM questionnaires for inpatient and outpa - tient settings that aim to capture patients’ experiences of healthcare. The NPS questionnaire used in this study included a basic item pool with 25 generic items and another five items intended for primary care settings. For each item, participants were asked to rate their opinion/ attitude on a five-point agreement scale ranging from 1 = No, not at all (strongly disagree) to 5 = Yes, completely (strongly agree). Each item also had an answer option of No opinion/not relevant . The NPS items covered seven dimensions: Overall impression, Emotional support , Par- ticipation and involvement , Respect and treatment , Con- tinuity and coordination , Information and knowledge , and Availability. Each dimension was scored from 0 to 100, with a higher score indicating higher patient satis - faction. Permission to use the NPS questionnaire in our lipoedema survey and associated manuals for NPS data analysis was obtained from the Swedish Association of Local Authorities and Regions. Reference data for a gen - eral Swedish female population were obtained from the NPS survey for primary care through open access to the Swedish Association of Local Authorities and Regions website [36]. Qualitative data were collected in the survey through self-constructed open-ended questions to explore how participants experienced healthcare in relation to each NPS dimension. The first question was: ‘Describe your experience of the overall process of seeking care for lipo - edema’. Thereafter, seven questions were followed with the same structure addressing the NPS dimensions. The question was: ‘Describe your experience of (the NPS dimension) in healthcare encounters regarding your lipoedema.’. Data collection procedure Information about the study, an invitation to participate, an informed consent form, and a link to the survey were sent via email to all members (approximately 700) of all known ( n = 5) Lipoedema Association groups across Sweden. These groups included women with lipoedema, support members (e.g. family members), and healthcare providers with a particular interest in lipoedema. How - ever, the inclusion criteria were female, aged 18 years or older, and diagnosed with lipoedema or having lipo - edema symptoms. The survey distribution (one email followed by two reminders) was conducted in coop - eration with the board members of all Lipoedema Asso - ciation groups. A total of 245 women with lipoedema participated in this survey. The data were collected between June and September 2021. Before full-scale data Page 4 of 14 Falck et al. BMC Women's Health (2025) 25:171 collection, the survey was tested on 15 women volunteers with lipoedema to identify potential logistical problems, assess the questionnaire’s adequacy, and estimate vari - ability in responses. Ten women provided written feed - back on how the questionnaires were carried out, how much time was required to respond to the survey, and suggestions on content and construction, which led to minor revisions for the final survey. Statistical analysis Quantitative data were analysed using the IBM SPSS Sta - tistical Package for Social Sciences version 27.0. Sociode - mographic data, lipoedema characteristics, healthcare visits, and effects of self-care and lipoedema treatment were compiled with descriptive statistics. The NPS ques - tionnaire generated data at the ordinal level, which were weighted, calculated, and averaged into dimensional scores according to a standardised NPS manual. Mean differences in the NPS dimensions between participants and the general female Swedish population were analysed with inferential statistics using Student´s t-tests [37]. The significance level was set at p < 0.05. Cronbach’s alpha was used to calculate item–scale correlations in the NPS dimensions, with results ranging from 0.78 to 0.96. Qualitative analysis Qualitative data (i.e., the answers from the open-ended questions addressing the NPS dimensions) were ana - lyzed using thematic analysis according to Braun and Clarke [ 38], an approach that was deemed appropri - ate for this study as it allows for broad flexibility when exploring patterns in qualitative data. The software tool NVivo [39] version 14 was used to systematically handle this large dataset containing 120-word pages, including between 185 and 202 free-text answers to each question. First, the data were read several times to familiarise with the content, including making notes of things of inter - est and getting ideas that could be of interest to explore further in coding. In the next phase, the data was ana - lyzed as a whole, capturing 20 codes of the essential fea - tures. Thereafter, the codes were explored to identify the broader patterns of meaning. This generated seven can - didate themes. After identifying overlaps, the candidate themes were combined and further developed, resulting in four refined, defined, and named themes. The process involved recurrently assessing the alignment between the themes and the research question (i.e., the women’s experiences of seeking care for lipoedema) to ensure the findings remained relevant and meaningful. Despite the sequential phases described above, the analysis was a recursive process, with back-and-forth movement between different stages (reviewing themes, return - ing to coding, and even data familiarization to ensure the analysis remains accurate and meaningful), which is described in the literature as reflexive thematic analysis [38]. Integration of the quantitative and qualitative inferences After separate analyses of the quantitative data from the NPS and the qualitative data from the free-text answers, the inferences from the two strands were, following an approach by Tashakkori et al. [ 34], integrated by inter - preting and discussing them in relation to existing litera - ture. Additionally, practical and theoretical implications were drawn from the combined results.

Participants’ sociodemographic, lipoedema characteristics, and diagnosis A total of 245 women with lipoedema responded to the survey (Table 1). The median age was 50–59 years. Most women had an upper secondary or university education, and approximately 70% worked full- or part-time. The most common age range at lipoedema onset was 12–17 years. Over half of the participants had lipoedema stage 3, and the most common lipoedema type (not presented in Table 1) reported among 58.7% of the women was hav- ing a combination of lipoedema from the buttocks to the ankles and arms. In this sample, 76.2% of the women had a confirmed lipoedema diagnosis, and among them, one-third had sought care ten times or more for lipoedema symptoms before being diagnosed with lipoedema. Moreover, most women had received a diagnosis of lipoedema within the last five years. It was about as common to have been diagnosed with lipoedema by a physician as it was by a lymphatic therapist. Among the 41 participants who had not received a lipoedema diagnosis (participants could respond to more than one answer option), the most common answers were I have not found a healthcare professional with lipoedema competence (n = 26), followed by I do not know where or whom to turn to ( n = 17). Six participants answered not having received a diagnosis because ‘ I have not sought care yet,’ and four responded ‘I do not require a diagnosis’ . Six women answered, ‘Other reason’. A total of 233 women responded to the free text regarding where they had first heard about lipoedema. The most common answers were (merged into groups) in the media/social media (43.8%) or from a friend/col - league/relative (21.9%). Approximately one-fifth (18.8%) of the women had first heard of lipoedema from a health- care provider. Other responses included googling/search- ing on the Internet (12.9%) and heard of lipoedema by a personal trainer/masseur (2.6%). Most women (61.5%) had primarily sought care for lipoedema in a public healthcare setting. Among Page 5 of 14 Falck et al. BMC Women's Health (2025) 25:171 Variable Frequency (n) Percentage Age (years) 245 18–39 16 6.5 40–49 57 23.3 50–59 97 39.6 60–69 45 18.4 70 and older 30 12.2 Educational level 245 Mandatory/High school 64 26.1 Upper secondary/University 181 73.9 Occupation1 244 Employed (working full- or part-time) 170 69.7 On sick leave (wholly or partially) 31 13.5 Unemployed 9 3.7 Studying 9 3.7 Retired 48 19.7 Other occupation 9 3.7 Age at lipoedema onset (years) 245 11 or younger 19 7.8 12–17 99 40.4 18–29 51 20.8 30–39 26 10.6 40–49 24 9.8 50 or older 26 10.6 Lipoedema stage 245 Stage 1 23 9.4 Stage 2 81 33.0 Stage 3 133 54.2 Whether healthcare for lipoedema was sought 244 Yes 216 88.5 No 28 11.5 Whether lipoedema diagnosis was confirmed 244 Yes 186 76.2 No 41 16.8 Do not know 17 7.0 Age at diagnosis (years) 186 12–29 3 1.6 30–39 30 16.1 40–49 52 28.0 50–59 65 34.9 60 or older 36 19.4 Duration of lipoedema diagnosis 186 Less than one year 23 12.4 1–2 years 36 19.4 3–5 years 76 40.9 6–9 years 24 12.9 10–19 years 12 6.5 20–29 years 4 2.2 30 years or longer 11 5.9 Healthcare visits before lipoedema diagnosis 186 Diagnosed at first health care visit 30 16.1 1–2 25 13.4 3–6 44 23.7 7–9 23 12.4 Table 1 Participants’ sociodemographic, lipoedema characteristics and diagnosis Page 6 of 14 Falck et al. BMC Women's Health (2025) 25:171 participants, most had sought care for lipoedema from a primary care physician (73.5%), and the last healthcare visit for lipoedema had occurred in outpatient healthcare, of which 95% had been in primary care and 5% in special- ized patient clinics (i.e., private liposuction clinics). The use and self-reported effects of self-care and lipoedema treatments Most women had tried several strategies to treat their lipoedema symptoms and health problems, and 60% reported using 4–8 lipoedema treatments and self- care approaches. Figure  1 shows the percentages of use and rated effects of different self-care approaches and lipoedema treatments. Most women performed low- intensity exercise, and approximately half rated it as effective (good or very good). Four of five women used compression garments; of those, approximately two- thirds reported good or very good effects. Lymphatic therapy performed by a lymphatic therapist was rated as having a better effect than doing manual lymph drainage as self-care. One-fourth of the women had undergone treatment for lipoedema symptoms with intermittent pneumatic compression devices. Among them, the majority rated the effect as good or very good. In this study sample, 20% had undergone liposuc - tion; all except one participant reported good or very Fig. 1 Use and self-reported effect of lipoedema treatments and self-care among participants (n = 244) Variable Frequency (n) Percentage 10–19 26 14.0 20 visits or more 38 20.4 Healthcare professional making the diagnosis 185 Lymphatic therapist 77 41.6 Physician in primary care 42 22.7 Physician in specialist care 37 20 Nurse 11 5.9 Physiotherapist 10 5.4 Occupational therapist 1 0.5 Other healthcare profession 7 3.8 1 30 participants chose more than one response option here Table 1 (continued) Page 7 of 14 Falck et al. BMC Women's Health (2025) 25:171 good results. In addition, 42 participants described (in free-text answers) the use of lipoedema treatments or self-care other than those pre-listed. The most common answers were lymphatic massage, a gluten-free and low- carbohydrate diet, and food supplements (magnesium, D-vitamin). Vibration massages with infrared therapy, exercise with a personal trainer, elevating the legs, and using an infrared sauna were also frequently mentioned. Experiences of healthcare Women with lipoedema scored significantly lower on satisfaction with care in all NPS dimensions than did the general Swedish female population (Fig.  2). The NPS scores ranged from 48 to 69 points for women with lipo - edema and from 71 to 85 points for the general Swedish female population. In this study sample, the lowest score (48 points) was found for Overall impression , reflecting lower patient satisfaction in terms of expectation of care, perceived efficiency, being cared for, and feeling safe. The dimension of Emotional support relates to the experi - ence of healthcare providers being available, responsive, and supportive of patients’ worries, anxiety, pain, or fear. In this dimension, the participants scored 51 points, compared with 76 points in the general female popula - tion. Although the highest score among women with lipoedema (69 points) was found in the dimension of Respect and treatment , which includes parameters such as compassion, commitment, and care for the patient and individual needs, there was still a difference of 16 points, as this dimension was also found to have the highest score in the general female population (85 points). More- over, women with lipoedema scored 22 points lower than the general population for Information and knowledge. This dimension measures how well the patient feels that healthcare providers can inform and communicate in a well-adapted manner, obtain answers to questions, and receive information about treatments, potential side effects, and warning signs to pay attention to. The analysis of the qualitative data addressing which experiences women with lipoedema have of seeking care for lipoedema generated four themes: A lonely and demanding journey in the healthcare system , An uncer - tainty of and inconsistency in available healthcare, A bur- den of being unheard and disrespected in healthcare , and The impact of lack of knowledge in care. A lonely and demanding journey in the healthcare system Overall, the women expressed profound dissatisfaction with lipoedema care. From the perspective of continuity and coordination, the healthcare system was described as challenging, in which no provider took overall respon - sibility. In general, healthcare providers were found to lack awareness of what to do and how to care for these women. Moreover, the women felt that healthcare Fig. 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 primary. care settings2. 1In this group, seven of the women did not respond to the NPS questionnaire. 2 Significant differences in mean scores between the groups in all seven dimensions = p < 0.001 Page 8 of 14 Falck et al. BMC Women's Health (2025) 25:171 providers did not collaborate with other clinics. The women shared experiences of feeling isolated in their efforts to navigate the healthcare system. Without a coor- dinated care plan, the women described their journey in care as a lonely and demanding struggle with extensive delays, a lack of referrals, and insufficient feedback from healthcare providers. A woman described it as follows: ‘There is no collaboration or coordination. No refer- rals. You must search for information about every - thing and find all the contacts yourself’ . Participant no 29. Even if some of the women had met providers who dem - onstrated a willingness to help, the women were simul - taneously informed that the providers were unable to act, as there were no guidelines on which care to offer or whom to refer to. A woman described this as: ‘My doctor has done all she can—it is not her fault that specialist (lipoedema) clinics do not exist’ . Participant no 101. Furthermore, low patient satisfaction regarding par - ticipation and involvement in care-related matters was expressed as a sense of loneliness and isolation. The lack of collaboration between healthcare providers left the women feeling abandoned and shut out of their needed care. This lack of coordination was described as being let down: ‘The Swedish healthcare has let me down…my qual - ity of life just worsens, but no one cares’ . Participant no 98. An uncertainty of and inconsistency in available healthcare The availability of lipoedema care was described as very limited and unequal, and depended mainly on the pri - vate economy, meaning if one could pay for care in the private sector. Even though overall, there were high bar - riers to public care, there were also regional differences, and a few regions offered some support such as referral to a dietician, water exercise, and the prescription of per - sonalised compression garments. In general, the women described lipoedema care as unequal, and the few women with access to lipoedema expertise in public health - care described it as fortuitous. A woman described it as follows: ‘It was a lucky coincidence that I came to a doc - tor who could give me the correct diagnosis after so many years of being misdiagnosed… ’ . Participant no 26. Having access to good care was described as an uncertain and often ever-shifting process, as the women suddenly could be left without care when, for example, they or a healthcare provider moved or a healthcare center with lipoedema expertise closed down. This was described by a woman as this: ‘A physiotherapist in public care had the knowledge, but I only was there once because she quit working there. After that, I haven’t received any other help’ . Participant no 92. A burden of being unheard and disrespected in healthcare Regarding experiences from the dimension of respect and treatment in healthcare encounters, the women described a dark picture characterised by a long and often unsuccessful struggle to be heard and acknowledged for their health problems and needs. Their attempts to con - vince the provider that something was wrong and to be heard were described as useless. The women felt that they were unheard, and that providers instead blamed them for being overweight and questioned them if they were actually telling the truth about their lifestyle behav - iour. These experiences were closely related to the dimen- sion of not receiving emotional support for worries and pain, as they often encountered an attitude of ignorance and a lack of interest. Such experiences was described by a woman in the following way: ‘In every contact with the doctor at the healthcare centre, she dismissed my problems with the same comment: “It can’t be like that” . She thought I was making it all up’ . Participant no 29. The care providers’ preconception that the women them- selves were responsible for their weight gain and health problems was made without being open to whether strategies for losing weight had been attempted before or why they eventually did not work. The women stated that their health problems, medical history, and efforts to manage their health problems were underestimated. A woman described it as follows: ‘…they see me as a person with very poor self-dis - cipline who gobbles up food and doesn’t exercise because I’m lazy. It is so far from the person I am and has been’ . Participant no 124. The experiences of being met disrespectfully and of lacking support affected the women emotionally, caus - ing distress and leaving them feeling disregarded and Page 9 of 14 Falck et al. BMC Women's Health (2025) 25:171 unsupported. Moreover, the dismissive attitudes of pro - viders contributed to undermining these women’s trust and confidence in healthcare and made them ques - tion the value of seeking care in the future. As a woman described: ‘I have been laughed at in the primary health care centre and told that lipoedema does not exist. I will never go back there again and be humiliated’ . Participant no 9. The impact of lack of knowledge in healthcare The pervading lack of information and knowledge of lipoedema in public care decreased the women’s oppor - tunities to receive adequate advice on how to manage their health problems and on different options for suit - able treatments. A woman described it as follows: ‘Unfortunately, no one in regular healthcare has the knowledge. There are probably exceptions, but I have not met them’ . Participant no 92. Many women experienced prolonged delays in diagnosis, misdiagnoses, and inadequate assessments of their health conditions. Moreover, the women reported that they did not receive satisfactory answers to questions on how to cope with their health problems or information about different treatment options that could be beneficial. Due to healthcare providers’ limited awareness of lipoedema, these women were forced to seek information about their symptoms independently. When they attempted to share their knowledge about lipoedema during health - care encounters, it frequently led to miscommunication, creating tension and misunderstanding. Healthcare pro - viders often dismissed the information or questioned whether lipoedema was legitimate, casting doubt on the diagnosis. A woman revealed: ‘The next doctor I sought help from started googling and stated that lipoedema is a wastebasket diagno - sis that I should watch out for. [They] compared it with fibromyalgia’ . Participant no 70. However, some providers attempted to find out more by conducting various physical examinations and taking blood tests. However, when a reasonable medical expla - nation for the symptoms could not be determined, they normalised the women’s problems. As expressed by a woman: ‘The tests showed that I was perfectly healthy. After some time, the pain got even worse, and I went to another healthcare centre. Same story’ . Participant no 98. For the women, this meant that their care needs were overlooked and disregarded. Therefore, despite disease progression, they continued to face obstacles in access - ing appropriate information from healthcare provid - ers regarding how to manage their health issues and the prognosis of their future health.

To the best of our knowledge, this is the first national study involving quantitative and qualitative data on expe- riences of healthcare, self-care, and treatments among women with lipoedema. The key findings of this study were that women with lipoedema often experienced a delay in lipoedema diagnosis spanning decades, com - monly preceded by numerous healthcare visits. Com - pared to a general female population, women with lipoedema reported significantly lower satisfaction with healthcare in all dimensions. Most of the women treated, with various effects, their lipoedema with different self- care approaches. Even though lipoedema treatments performed in healthcare were perceived as the most effective, they were used less. The first research question in this study aimed to address the women’s experiences of seeking care for lipo- edema. Following the mixed method design, the infer - ences from the two strands, comprising of data from the NPS questionnaire and free-text answers related to the NPS dimension, are integrated by discussing them in relation to each other and relevant existing literature. To begin, study participants described the availability of lipoedema care as low, unequal, and unpredictable, depending on either being lucky to have met the ‘right doctor’ or facing a general lack of awareness of lipoedema among providers. Also, the absence of guidelines for lipo- edema treatments in public healthcare was pointed out as a barrier to availability. Such obstacles can be dis - cussed in relation to a model of symbolic violence in healthcare, where women with chronic diseases are mar - ginalized through non-recognition (providers deny the condition as a chronic disease), institutionalized medical un-care (no providers take care of the patient), scientific un-care (waiting for more evidence), or con-descension (lack of consensus around the disease) [ 40]. The model of symbolic violence can contribute to the understanding of why lipoedema remains a “hidden women’s disease” and is not being paid attention to in the broader medical community or society at large. Regarding lipoedema, this means that without a proper acknowledgment of lipo - edema as a chronic disease requiring qualified care, many Page 10 of 14 Falck et al. BMC Women's Health (2025) 25:171 women will continue to be misdiagnosed and left without appropriate medical support. The dissatisfaction regarding care availability is closely connected to the women’s low patient satisfaction in the NPS dimensions of continuity and coordination in healthcare. Many of the undiagnosed women reported that they lacked guidance on where or from whom to seek help. These results align with how the women described repetitive unsuccessful efforts to navigate the system independently and that they felt left alone. Previ - ous studies have revealed that planning and conducting treatments in interdisciplinary teams with women who suffer from other chronic diseases that have complex etiology and multiple comorbidities like lipoedema has shown promising results in terms of improved func - tional quality of life and reduced chronic pain [ 41– 43]. Hence, the importance of a holistic approach in address - ing the diverse and complex healthcare needs of women with lipoedema cannot be overstated. Collaborative efforts among healthcare providers, including physicians, nurses, lymphatic therapists, physiotherapists, dieticians, psychologists, and other specialists, may provide more integrated healthcare to ensure women receive the best possible care. While the United States, Great Britain, the Netherlands and Germany have provided guidelines that include recommendations for the diagnostic criteria and treatments for lipoedema [ 2, 17, 21, 44], the absence of published guidelines in Sweden remains an unmet need to improve and expand care for affected women [ 45, 46]. Furthermore, an implication for clinical practice is the creation of individual care plans for women with lipo - edema to address their specific health needs. This may be because each woman receives support and suitable treat - ment based on her unique medical history and health status. Such an approach could also empower women and help them maintain an active role in their health by providing information and education on optimising their health and well-being [47]. Another key finding of this study was the women’s experiences in healthcare, described as a lonely and exhausting struggle that often extended over many years, colored by disrespect and ignorance from healthcare pro- viders. The low score in the NPS dimensions of respect and treatments, and emotional support corresponded with the theme derived from the qualitative data—the burden of being unheard and disrespected in healthcare. The women’s experiences can be shed in the light of pre- vious research, showing that female sex, large body size, and chronic pain are factors that constitute bias and put women in unfavourable positions in healthcare encoun - ters, wherein healthcare providers tend to ignore or min - imize symptom severity or attribute it to a psychological etiology [48, 49]. Gender bias, consolidated by andronor - mativity in healthcare, is grounded in stereotypes that women are fragile and overemotional, and can affect both care and health outcomes for women, wherein women’s pain and other physical health problems are often attrib - uted to psychosomatic causes [ 50– 52]. Moreover, the perceptions of weight bias among healthcare provid - ers can negatively influence the patient’s experiences and engagement with healthcare services [ 53]. In this study, several women reported that healthcare provid - ers tended to attribute their health problems to over - weight and that they were met with wrong assumptions according to their weight gain. Overall, such biases can constitute barriers for women with chronic conditions when managing health problems and seeking healthcare and have also previously been described among women with lipoedema in diverse international contexts [ 29, 30]. To provide more equitable care for women with lipo - edema, such biases must be recognized and addressed in a healthcare setting. One way to do this is to provide healthcare providers with ongoing training on the impact of care bias [54]. The lack of awareness of lipoedema among health - care providers was reflected in low scores on the NPS dimension of knowledge and information. The women described this as the main reason for not receiving a diagnosis or adequate information on their health condi - tion. The qualitative data generated a theme- the impact of lack of knowledge in care- pointing out the women’s experiences with healthcare providers failing to explain women’s health problems. It has been previously known that medically unexplained symptoms may strain the relationship between the patient and provider, contrib - uting to mutual feelings of being stuck, lack of trust, and a sense of helplessness [ 55]. A study claims that for healthcare providers, patients with diffuse symptoms that are difficult to diagnose and treat constitute appar - ent deviations and are described as difficult and complex [50]. Another study concludes that, although health - care providers recognize the importance of an adequate explanation or diagnosis of unexplained symptoms and fear neglecting the patient’s symptoms and miss - ing underlying diseases, they face difficulties explain - ing the nature of the symptoms during their encounters with these patients [56, 57]. Instead, healthcare providers often use different approaches to explain the symptoms to the patient, for example, telling the patient that there is no disease or using metaphors referring to psychologi - cal or social problems [ 57]. In the context of lipoedema, educating healthcare providers about lipoedema is of utmost importance. Moreover, it is essential for provid - ers to listen actively, acknowledge and address the indi - vidual needs of women with lipoedema, and collaborate intra-disciplinarily. The other research question in this study was to exam - ine which self-care approaches and lipoedema treatments Page 11 of 14 Falck et al. BMC Women's Health (2025) 25:171 the women had used and how they perceived their effects. Important to acknowledge is that many women reported that they had sought care for lipoedema mul - tiple times before being diagnosed, indicating that they had lived a considerably long part of their adult lives without access to well-suited treatments. As such, many women had experiences of using several strategies to treat their health problems independently, and the most common were those that could be performed at home. Although most women performed low-intensity exercise, only approximately half reported positive effects, which aligns with previous research findings [ 58]. This can be explained by the fact that many women with lipoedema experience daily pain and limitations in physical func - tion [10]. The disproportionate distribution of lipoedema tissue combined with hypermobile joints can negatively affect musculoskeletal health, including orthopaedic conditions such as valgus knee, ankle pronation, gait alterations, arthritis, and knee replacement [ 2]. There- fore, individually adapted physical therapy regimens, which should be started slowly and advanced based on individual tolerance, are recommended and have shown promising results regarding pain and quality of life in earlier stages [ 2]. Another key finding in this study was that although the perceived effects of different self-care approaches and treatments varied, treatments performed by healthcare providers, such as manual lymphatic drain- age and liposuction, were generally perceived to have the best effect. These findings could be attributed to the fact that co-creating more tailored treatments in healthcare for patients with multi-complex care needs is essential for achieving better health outcomes [ 59]. Importantly, self-care should not be underestimated as it plays a cru - cial role in managing lipoedema. Hence, healthcare pro - viders should actively encourage women with lipoedema to adopt or maintain a healthy lifestyle, as it enhances their ability to manage symptoms, improve mobility, and increase quality of life [ 60]. This can be achieved by offering patient education, individualized care plans, and emotional support, which, in turn, not only contrib - ute to enhancing the women’s overall well-being but also foster a collaborative patient-provider partnership [ 2, 60]. This study also revealed that more than 80% of the women used compression garments, and the vast major - ity reported a good or very good effect. It should be acknowledged that this study did not explore the specific effects of different treatments on certain health issues, such as pain, leg heaviness, or mobility. However, similar data from a previous study has shown that women with lipoedema reported that using compression garments was beneficial in reducing pain, supporting tissue, and improving overall comfort [ 61]. In this study, one-fifth of the women had undergone liposuction, a treatment shown to have the highest proportion of reports of very good effects. Although randomized controlled lipoedema trials on liposuction are currently lacking, a previous study revealed positive results on the quality of life and health status of patients with lipoedema who underwent this treatment [62]. Considering the findings of this study, it is evident that women with lipoedema have challenging journeys in healthcare, characterized by repeated misdiagnoses, disrespectful reception, and low or no access to proper care. This highlights the need for further research and intervention in this area. It is recommended to provide comprehensive education on lipoedema to healthcare providers along with training in addressing biases in care. Furthermore, as lipoedema is a complex disease that affects one’s physical, mental, and social life, the authors of this study suggest developing clinical guidelines to treat and support women with lipoedema. Furthermore, future research should focus on the development and effectiveness of healthcare interventions such as different lipoedema treatments, patient education, and self-man - agement, as well as on studying various dimensions of the psychosocial impact of living with lipoedema. Finally, this study was conducted in the Swedish context, and it should be considered that healthcare systems, cultural norms, and access to care vary significantly across coun - tries. To enhance our understanding of this topic, it is advisable to undertake future investigations encompass - ing women with lipoedema from diverse populations, embrace cross-cultural comparisons, and foster interna - tional collaboration in lipoedema research. This study has some limitations. Due to non-existent national public authority registers or other Swedish lipoedema data sources, participants were exclusively recruited from Lipoedema Association groups, which may have affected the external validity of these findings. Moreover, information on how many of the 700 mem - bers were eligible for inclusion was unavailable, nor could it be confirmed how many of the members actu - ally received the email/study invitation. Therefore, the proportion of confirmed lipoedema diagnoses among the participants in this study is probably not representa - tive of the general lipoedema population. There may also have been selection bias because we had no information about those who did not participate, and one in four of the participants was self-diagnosed. Moreover, this study did not compare the women in groups based on socio - economic background factors, and the high proportion of educated participants may have skewed the results. All data were self-reported, indicating that there might have been recall bias among participants in questions on lipoedema characteristics and those on their retrospec - tive experiences of the effectiveness of lipoedema treat - ments. Furthermore, the data collection was conducted through a survey, enabling answers from a large number Page 12 of 14 Falck et al. BMC Women's Health (2025) 25:171 of participants and enhancing a broad variation of experi- ences. The prominence of collecting data through written text in qualitative research lies in its time efficiency and practicality for participants [63]. Although the qualitative data was comprehensive, one important consideration is that written text, compared to interviews, is limited by the risk of superficial answers and the lack of contextual depth [63]. However, after evaluating its depth, variation, and contextual details, the data in this study were consid- ered rich and descriptive, containing detailed responses and diverse perspectives. Moreover, a key strength was the mixed-methods approach, where quantitative and qualitative data complemented each other, providing a deeper understanding of the research questions. This type of triangulation, which refers to using multiple

and data sources [34], contributed to improving the study’s credibility and robustness.

This study shows that women with lipoedema make great efforts and use several strategies to manage their health problems with little or no support from the healthcare system. The women’s dissatisfaction with care and the low use of lipoedema treatments performed by health - care providers were primarily described as a result of pervasive low knowledge of lipoedema, repeated misdi - agnoses, fat-shaming, and a lack of recommendations for medical treatments. Therefore, there is an urgent need to identify lipoedema in women to enhance timely diagno - sis. This should be done by educating healthcare provid - ers regarding lipoedema and offering them continuous training on how to address biases in care. Moreover, to meet the women’s individual needs, provide them with high-quality care, and improve their quality of life, it is critical to develop clinical guidelines for lipoedema, including interdisciplinary collaboration and strategies. Abbreviations PREMs Patient Reported Experiences Measurements NPS The Swedish National Patient Survey

We express our appreciation to Marita Melin, Tomas Haag (Patientföreningen Lymf Region Jönköping), and Elin Ambjörnsson (Region Jönköping Län) for their cooperation in the development of the survey used in this study. We also thank the board members of the Lipoedema Associations in Sweden, including Margareta Haag (Svenska Ödemförbundet), Ulrika Fransson (Lymf Kalmar län), and Gunilla Jansson (Lymf- och lipödemföreningen Stockholms län) for their collaboration and dedication in organising the survey logistics. Author contributions All authors, Johanna Falck, Annette Nygårdh, Bo Rolander, Lise-Lotte Jonasson, Jan Mårtensson, have substantially contributed to this article and met the International Committee of Medical Journal Editors (ICMJE) criteria for authorship. All authors have reviewed the manuscript. Funding Open access funding provided by Jönköping University. This study is part of a Ph.D. thesis provided by the School of Health and Welfare, Jönköping University, Sweden. No external funding was received for it. Data availability The datasets generated and analyzed during this study are not publicly available due to ethical restrictions. For further information related to this dataset, please contact the corresponding author. Declarations Ethics approval and consent to participate The ethical considerations followed the principles of the Declaration of Helsinki (World Medical Association, 2013). All participants received written information regarding the study, the nature of voluntary participation, handling and confidentiality of the data, and how the study results would be presented. Participants were informed that they, at any time, could leave the study without requiring justification. If responding to the survey caused any harm or discomfort, the participants could contact and receive support from a named physician (not involved in this research project) with knowledge about lipoedema. Informed consent was obtained from all the participants. This study was approved by the Swedish Ethical Review Authority (Approval ID). 2021 − 01879. Consent for publication Not applicable. Competing interests The authors declare no competing interests. Author details 1Department of Nursing Science, School of Health and Welfare, Jönköping University, Jönköping, Sweden 2Faculty of Caring Science, Work Life and Social Welfare, University of Borås, Borås, Sweden 3Academy for Health and Care, Futurum, Jönköping County Council, Jönköping, Sweden 4Department of Behavioural Science and Social Work, School of Health Sciences, Jönköping University, Jönköping, Sweden Received: 4 December 2023 / Accepted: 1 April 2025

1. Ernst AM, Bauer H, Bauer H-C, Steiner M, Malfertheiner A, Lipp A-T. Lipedema research;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 3 0 1 0 0 9 8. 2. Herbst KL, Kahn LA, Iker E, Ehrlich C, Wright T, McHutchison L, et al. Standard of care for lipedema in the united States. Phlebology. 2021;36(10):779–96. h t t p s : / / d o i . o r g / 1 0 . 1 1 7 7 / 0 2 6 8 3 5 5 5 2 1 1 0 1 5 8 8 7. 3. Al-Ghadban S, Teeler ML, Bunnell BA. Estrogen as a contributing factor to the development of lipedema. In: Heshmati HM, editor. Hot topics in endocrinol- ogy and metabolism. London: IntechOpen; 2021. h t t p s : / / d o i . o r g / 1 0 . 5 7 7 2 / i n t e c h o p e n . 9 6 4 0 2. 4. Katzer K, Hill JL, McIver KB, Foster MT. Lipedema and the potential role of Estrogen in excessive adipose tissue accumulation. Int J Mol Sci. 2021;22(21):11720. h t t p s : / / d o i . o r g / 1 0 . 3 3 9 0 / i j m s 2 2 2 1 1 1 7 2 0. 5. Grigoriadis D, Sackey E, Riches K, van Zanten M, Brice G, England R, et al. Investigation of clinical characteristics and genome associations in the ‘UK Lipoedema’ cohort. PLoS ONE. 2022;17(10). h t t p s : / / d o i . o r g / 1 0 . 1 3 7 1 / j o u r n a l . p o n e . 0 2 7 4 8 6 7. 6. Ishaq M, Bandara N, Morgan S, Nowell C, Mehdi AM, Lyu R, et al. Key signal- ing networks are dysregulated in patients with the adipose tissue disorder, lipedema. Int J Obes. 2022;46(3):502–14. h t t p s : / / d o i . o r g / 1 0 . 1 0 3 8 / s 4 1 3 6 6 - 0 2 1 - 0 1 0 0 2 - 1. 7. Poojari A, Dev K, Rabiee A, Lipedema. Insights into morphology, pathophysi- ology, and challenges. Biomedicines. 2022;10(12):3081. h t t p s : / / d o i . o r g / 1 0 . 3 3 9 0 / b i o m e d i c i n e s 1 0 1 2 3 0 8 1. Page 13 of 14 Falck et al. BMC Women's Health (2025) 25:171 8. Al-Ghadban S, Cromer W, Allen M, Ussery C, Badowski M, Harris D, et al. Dilated blood and lymphatic microvessels, angiogenesis, increased macro- phages, and adipocyte hypertrophy in lipedema thigh skin and fat tissue. J Obes. 2019;2019:8747461. h t t p s : / / d o i . o r g / 1 0 . 1 1 5 5 / 2 0 1 9 / 8 7 4 7 4 6 1. 9. Dudek J, Białaszek W, Ostaszewski P . Quality of life in women with lipoedema: a contextual behavioral approach. Qual Life Res. 2016;25(2):401–8. h t t p s : / / d o i . o r g / 1 0 . 1 0 0 7 / s 1 1 1 3 6 - 0 1 5 - 1 0 8 0 - x. 10. Falck J, Rolander B, Nygårdh A, Jonasson L-L, Mårtensson J. Women with lipoedema: a National survey on their health, health-related quality of life, and sense of coherence. BMC Womens Health. 2022;22(1):457. h t t p s : / / d o i . o r g / 1 0 . 1 1 8 6 / s 1 2 9 0 5 - 0 2 2 - 0 2 0 2 2 - 3. 11. Romeijn JR, de Rooij MJ, Janssen L, Martens H. Exploration of patient characteristics and quality of life in patients with lipoedema using a survey. Dermatol Ther. 2018;8(2):303–11. h t t p s : / / d o i . o r g / 1 0 . 1 0 0 7 / s 1 3 5 5 5 - 0 1 8 - 0 2 4 1 - 6. 12. Langendoen SI, Habbema L, Nijsten TEC, Neumann HAM. Lipoedema: from clinical presentation to therapy. A review of the literature. Br J Dermatol. 2009;161(5):980–6. h t t p s : / / d o i . o r g / 1 0 . 1 1 1 1 / j . 1 3 6 5 - 2 1 3 3 . 2 0 0 9 . 0 9 4 1 3 . x. 13. World Health Organization. Self-care interventions for health. h t t p s : / / w w w . w h o . i n t / h e a l t h - t o p i c s / s e l f - c a r e # t a b = t a b _ 1. Accessed 30 Nov 2023. 14. Socialstyrelsen. Egenvård. h t t p s : / / p a t i e n t s a k e r h e t . s o c i a l s t y r e l s e n . s e / r i s k e r - o c h - v a r d s k a d o r / r i s k o m r a d e n / e g e n v a r d /. Accessed 30 Nov 2023. 15. Fetzer A, Wise C. Living with lipoedema: reviewing different self-management techniques. Br J Community Nurs. 2015;20(Sup10):S14–9. h t t p s : / / d o i . o r g / 1 0 . 1 2 9 6 8 / b j c n . 2 0 1 5 . 2 0 . s u p 1 0 . s 1 4. 16. Cooper-Stanton G. Adjustable compression devices for chronic oedema and lipoedema: purpose, selection and application. Br J Community Nurs. 2019;24(6):278–82. h t t p s : / / d o i . o r g / 1 0 . 1 2 9 6 8 / b j c n . 2 0 1 9 . 2 4 . 6 . 2 7 8. 17. Hardy D, Williams A. Best practice guidelines for the management of lipo- edema. Br J Community Nurs. 2017;22(Sup10):S44–8. h t t p s : / / d o i . o r g / 1 0 . 1 2 9 6 8 / b j c n . 2 0 1 7 . 2 2 . s u p 1 0 . s 4 4. 18. Baumgartner A, Hueppe M, Meier-Vollrath I, Schmeller W. Improvements in patients with lipedema 4, 8 and 12 years after liposuction. Phlebology. 2021;36(2):152–9. h t t p s : / / d o i . o r g / 1 0 . 1 1 7 7 / 0 2 6 8 3 5 5 5 2 0 9 4 9 7 7 5. 19. Dadras M, Mallinger PJ, Corterier CC, Theodosiadi S, Ghods M. Liposuction in the treatment of lipedema: A longitudinal study. Arch Plast Surg: APS. 2017;44(4):324–31. h t t p s : / / d o i . o r g / 1 0 . 5 9 9 9 / a p s . 2 0 1 7 . 4 4 . 4 . 3 2 4. 20. Wollina U, Heinig B. Treatment of lipedema by low-volume micro-cannular liposuction in tumescent anesthesia: results in 111 patients. Dermatol Ther. 2019;32(2):e12820. h t t p s : / / d o i . o r g / 1 0 . 1 1 1 1 / d t h . 1 2 8 2 0. 21. Halk AB, Damstra RJ. First Dutch guidelines on lipedema using the inter- national classification of functioning, disability and health. Phlebology. 2017;32(3):152–9. h t t p s : / / d o i . o r g / 1 0 . 1 1 7 7 / 0 2 6 8 3 5 5 5 1 6 6 3 9 4 2 1. 22. Ghods M, Georgiou I, Schmidt J, Kruppa P . Disease progression and comor- bidities in lipedema patients–a 10-year retrospective analysis. Dermatol Ther. 2020;e14534. h t t p s : / / d o i . o r g / 1 0 . 1 1 1 1 / d t h . 1 4 5 3 4. 23. Tuğral A, Bakar Y. An approach to lipedema: a literature review of cur- rent knowledge of an underestimated health problem. Eur J Plast Surg. 2019;42(6):549–58. h t t p s : / / d o i . o r g / 1 0 . 1 0 0 7 / s 0 0 2 3 8 - 0 1 9 - 0 1 5 1 9 - 9. 24. McCormack B, McCance T. Person-Centred Practice in Nursing and Health Care: Theory and Practice. In Riddett J. Person-Centred Practice in Nursing and Health Care: Nursing Management. England; 2017;23(10):15–15.32. 25. Krist AH, Tong ST, Aycock RA, Longo DR. Engaging patients in Decision- Making and behavior change to promote prevention. Stud Health Technol Inf. 2017;240:284–302. h t t p : / / w w w . n c b i . n l m . n i h . g o v / p m c / a r t i c l e s / p m c 6 9 9 6 0 0 4 /. 26. Ekman I, Ebrahimi Z, Olaya Contreras P . Person-centred care: looking back, looking forward. Eur J Cardiovasc Nurs. 2021;20(2):93–5. h t t p s : / / d o i . o r g / 1 0 . 1 0 9 3 / e u r j c n / z v a a 0 2 5. 27. Szypłowska M, Gorecka A, Kuś A, Zaremba B, Obel M. Diagnosis and manage- ment of lipoedema– a review paper. J Edu Health Sport. 2020;10(9):494–9. h t t p s : / / d o i . o r g / 1 0 . 1 2 7 7 5 / J E H S . 2 0 2 0 . 1 0 . 0 9 . 0 5 9. 28. Christoffersen V, Tennfjord MK. Younger women with lipedema, their experiences with healthcare providers, and the importance of social sup- port and belonging: A qualitative study. Int J Environ Res Public Health. 2023;20(3):1925. h t t p s : / / d o i . o r g / 1 0 . 3 3 9 0 / i j e r p h 2 0 0 3 1 9 2 5. 29. Clarke C, Kirby JN, Smidt T, Best T. Stages of lipoedema: experiences of physi- cal and mental health and health care. Qual Life Res. 2022. h t t p s : / / d o i . o r g / 1 0 . 1 0 0 7 / s 1 1 1 3 6 - 0 2 2 - 0 3 2 1 6 - w. 30. Melander C, Juuso P , Olsson M. Women’s experiences of living with lipedema. Health Care Women. 2021;1–16. h t t p s : / / d o i . o r g / 1 0 . 1 0 8 0 / 0 7 3 9 9 3 3 2 . 2 0 2 1 . 1 9 3 2 8 9 4. 31. Kingsley C, Patel S. Patient-reported outcome measures and patient-reported experience measures. BJA Educ. 2017;17(4):137–44. h t t p s : / / d o i . o r g / 1 0 . 1 0 9 3 / b j a e d / m k w 0 6 0. 32. Kamamoto F, Baiocchi JMT, Batista BN, Ribeiro RDA, Modena DAO, Gornati VC. (2025). Lipedema: exploring pathophysiology and treatment strategies - state of the art. J Vasc Bras. 2025;23:e20240025. h t t p s : / / d o i . o r g / 1 0 . 1 5 9 0 / 1 6 7 7 - 5 4 4 9 . 2 0 2 4 0 0 2 5 2 33. Lipedema Foundation. FIRST LOOK. Learning by Listening - Early findings from the Lipedema Foundation Registry survey. 2022. h t t p s : / / s t a t i c 1 . s q u a r e s p a c e . c o m / s t a t i c / 5 7 7 5 8 9 9 a c 5 3 4 a 5 e 8 1 3 c 0 5 0 d b / t / 6 2 9 0 d 2 c d 9 2 3 a 0 1 5 6 d 8 f c e a 1 e / 1 6 5 3 6 5 8 3 1 7 5 0 4 / L F _ F i r s t + L o o k + R e g i s t r y + R e p o r t . p d f Accessed 20 Febr 2025. 34. Tashakkori A, Johnson B, Teddlie C. Foundations of mixed methods research. Integrating quantitative and qualitative approaches in the social and behav- ioral sciences. 2nd ed. London: SAGE Publication; 2020. 35. The Swedish Association of Local Authorities and Regions. Nationell Patien- tenkät. Rapport Analysuppdrag: Modellutveckling, utvärdering samt tidigare studier och enkäter 2015. h t t p s : / / p a t i e n t e n k a t . s e / d o w n l o a d / 1 8 . 4 0 c 8 8 9 3 8 1 8 4 0 e 6 0 5 2 1 a a 1 a 1 4 / 1 6 6 8 0 0 6 1 1 9 0 2 9 / R a p p o r t % 2 0 A n a l y s u p p d r a g _ M o d e l l u t v e c k l i n g , % 2 0 u t v % C 3 % A 4 r d e r i n g % 2 0 s a m t % 2 0 t i d i g a r e % 2 0 s t u d i e r % 2 0 o c h % 2 0 e n k % C 3 % A 4 t e r _ 2 0 1 5 . p d f. Accessed 30 Nov 2023. 36. Swedish Association of Local Authorities and Regions. Nationell patientenkät Primärvård 2021. h t t p s : / / r e s u l t a t . p a t i e n t e n k a t . s e / P r i m % C 3 % A 4 r v % C 3 % A 5 r d / 2 0 2 1. Accessed 30 Nov 2023. 37. Kim HY. Statistical notes for clinical researchers: the independent samples t-test. Restor Dent Endod. 2019;44(3):e26. h t t p s : / / d o i . o r g / 1 0 . 5 3 9 5 / r d e . 2 0 1 9 . 4 4 . e 2 6. 38. Braun V, Clarke V. Thematic analysis: A practical guide. Los Angeles: SAGE; 2022. 39. Dhakal K, NVivo. J Med Libr Assoc. 2022;110(2):270–2. h t t p s : / / d o i . o r g / 1 0 . 5 1 9 5 / j m l a . 2 0 2 2 . 1 2 7 1. 40. Gimeno Torrent X. The circuit of symbolic violence in chronic fatigue syn- drome (CFS)/myalgic encephalomyelitis (ME) (I): A preliminary study. Health Care Women Int. 2022;43(1–3):5–41. h t t p s : / / d o i . o r g / 1 0 . 1 0 8 0 / 0 7 3 9 9 3 3 2 . 2 0 2 1 . 1 9 2 5 9 0 0. 41. Allaire C, Williams C, Bodmer-Roy S, Zhu S, Arion K, Ambacher K, et al. Chronic pelvic pain in an interdisciplinary setting: 1-year prospective cohort. Am J Obstet Gynecol. 2018;218(1):114.e1-.e12. h t t p s : / / d o i . o r g / 1 0 . 1 0 1 6 / j . a j o g . 2 0 1 7 . 1 0 . 0 0 2. 42. Allaire C, Long AJ, Bedaiwy MA, Yong PJ. Interdisciplinary teams in endome- triosis care. Semin Reprod Med. 2020;38(2–03):227–34. h t t p s : / / d o i . o r g / 1 0 . 1 0 5 5 / s - 0 0 4 0 - 1 7 1 8 9 4 3. 43. Antunes MD, Schmitt ACB, Marques AP . Amigos de fibro (Fibro Friends): development of an educational program for the health promotion of fibro- myalgia patients. Prim Health Care Res Dev. 2022;23:e44. h t t p s : / / d o i . o r g / 1 0 . 1 0 1 7 / s 1 4 6 3 4 2 3 6 2 1 0 0 0 7 7 3. 44. Reich-Schupke S, Schmeller W, Brauer WJ, Cornely ME, Faerber G, Ludwig M, et al. S1 guidelines: lipedema. J Dtsch Dermatol Ges. 2017;15(7):758–67. 45. Statens beredning för medicinsk och social utvärdering. Lipödem– diagnos- tik, behandling, upplevelser och erfarenheter. 2021;SBU-rapport nr 327. ISBN 978-91-88437-71-6. https://www.sbu.se/327. Accessed 4 Dec 2023. 46. Statens beredning för medicinsk och social utvärdering. Prioritering av for- skningsfrågor gällande diagnostik, behandling och bemötande av personer med lipödem. 2023;SBU-rapport nr 361. ISBN 978-91-987553-5-0. h t t p s : / / w w w . s b u . s e / 3 6 1 . Accessed 4 Dec 2023. 47. Coulter A, Entwistle VA, Eccles A, Ryan S, Shepperd S, Perera R. Personalised care planning for adults with chronic or long-term health conditions. Cochrane Database Syst Rev. 2015;2015(3):CD010523. h t t p s : / / d o i . o r g / 1 0 . 1 0 0 2 / 1 4 6 5 1 8 5 8 . C D 0 1 0 5 2 3 . p u b 2. 48. McManimen S, McClellan D, Stoothoff J, Gleason K, Jason LA. Dismissing chronic illness: A qualitative analysis of negative health care experiences. Health Care Women Int. 2019;40(3):241–58. h t t p s : / / d o i . o r g / 1 0 . 1 0 8 0 / 0 7 3 9 9 3 3 2 . 2 0 1 8 . 1 5 2 1 8 1 1. 49. Wray S, Deery R. The medicalization of body size and women’s healthcare. Health Care Women Int. 2008;29(3):227–43. h t t p s : / / d o i . o r g / 1 0 . 1 0 8 0 / 0 7 3 9 9 3 3 0 7 0 1 7 3 8 2 9 1. 50. Claréus B, Renström EA. Physicians’ gender bias in the diagnostic assessment of medically unexplained symptoms and its effect on patient–physician rela- tions. Scand J Psychol. 2019;60(4):338–47. h t t p s : / / d o i . o r g / 1 0 . 1 1 1 1 / s j o p . 1 2 5 4 5. 51. Heise L, Greene ME, Opper N, Stavropoulou M, Harper C, Nascimento M, et al. Gender inequality and restrictive gender norms: framing the challenges to health. Lancet. 2019;393(10189):2440–54. h t t p s : / / d o i . o r g / 1 0 . 1 0 1 6 / s 0 1 4 0 - 6 7 3 6 ( 1 9 ) 3 0 6 5 2 - x. Page 14 of 14 Falck et al. BMC Women's Health (2025) 25:171 52. Samulowitz A, Gremyr I, Eriksson E, Hensing G. Brave men and emotional women: A Theory-Guided literature review on gender bias in health care and gendered norms towards patients with chronic pain. Pain Res Manag. 2018;2018:6358624. h t t p s : / / d o i . o r g / 1 0 . 1 1 5 5 / 2 0 1 8 / 6 3 5 8 6 2 4. 53. Alberga AS, Edache IY, Forhan M, Russell-Mayhew S. Weight bias and health care utilization: a scoping review. Prim Health Care Res Dev. 2019;20:e116. h t t p s : / / d o i . o r g / 1 0 . 1 0 1 7 / s 1 4 6 3 4 2 3 6 1 9 0 0 0 2 2 7. 54. Ramos Salas X, Alberga AS, Cameron E, Estey L, Forhan M, Kirk SFL, Russell- Mayhew S, Sharma AM. Addressing weight bias and discrimination: moving beyond Raising awareness to creating change. Obes Rev. 2017;18:1323–35. h t t p s : / / d o i . o r g / 1 0 . 1 1 1 1 / o b r . 1 2 5 9 2. 55. Johansen M-L, Risor MB. What is the problem with medically unexplained symptoms for GPs? A meta-synthesis of qualitative studies. Patient Educ Couns. 2017;100(4):647–54. h t t p s : / / d o i . o r g / 1 0 . 1 0 1 6 / j . p e c . 2 0 1 6 . 1 1 . 0 1 5. 56. Sirri L, Grandi S, Tossani E. Medically unexplained symptoms and general practitioners: a comprehensive survey about their attitudes, experiences and management strategies. Fam Pract. 2017;34(2):201–5. h t t p s : / / d o i . o r g / 1 0 . 1 0 9 3 / f a m p r a / c m w 1 3 0. 57. Olde Hartman TC, Hassink-Franke LJ, Lucassen PL, van Spaendonck KP , van Weel C. Explanation and relations. How do general practitioners deal with patients with persistent medically unexplained symptoms: a focus group study. BMC Fam Pract. 2009;10(1):68. h t t p s : / / d o i . o r g / 1 0 . 1 1 8 6 / 1 4 7 1 - 2 2 9 6 - 1 0 - 6 8. 58. Donahue PMC, Crescenzi R, Petersen KJ, Garza M, Patel N, Lee C, et al. Physical therapy in women with early stage lipedema: potential impact of multimodal manual therapy, compression, exercise, and education interventions. Lym- phat Res Biol. 2022;20(4):382–90. h t t p s : / / d o i . o r g / 1 0 . 1 0 8 9 / l r b . 2 0 2 1 . 0 0 3 9. 59. Kuipers SJ, Cramm JM, Nieboer AP . The importance of patient-centered care and co-creation of care for satisfaction with care and physical and social well-being of patients with multi-morbidity in the primary care setting. BMC Health Serv Res. 2019;19(1):13. h t t p s : / / d o i . o r g / 1 0 . 1 1 8 6 / s 1 2 9 1 3 - 0 1 8 - 3 8 1 8 - y. 60. Williams A, MacEwan I. Accurate diagnosis and self-care support for women with lipoedema. Pract Nurs. 2016;27(7):325–32. h t t p s : / / d o i . o r g / 1 0 . 1 2 9 6 8 / p n u r . 2 0 1 6 . 2 7 . 7 . 3 2 5. 61. Paling I, Macintyre L. Survey of lipoedema symptoms and experience with compression garments. Br J Community Nurs. 2020;25(Sup4):S17–22. h t t p s : / / d o i . o r g / 1 0 . 1 2 9 6 8 / b j c n . 2 0 2 0 . 2 5 . s u p 4 . s 1 7. 62. Schlosshauer T, Heiss C, von Hollen AK, Spennato S, Rieger UM. Liposuction treatment improves disease-specific quality of life in lipoedema patients. Int Wound J. 2021;18(6):923–31. h t t p s : / / d o i . o r g / 1 0 . 1 1 1 1 / i w j . 1 3 6 0 8. 63. Polit DF, Beck CT. Resource manual for nursing research: generating and assessing evidence for nursing practice. Eleventh edition. Philadelphia: Wolt- ers Kluwer; 2021. Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.