Experiences of Sexual Health and Intimate Relationships in Women With Lipedema: A Qualitative Study.

The present study aimed to explore the experiences of sexual health and intimate relationships in women with lipedema. The research questions were as follows: How do women with lipedema describe the experiences of their sexual health? What are their experiences of intimate relationships? How do women with lipedema describe the experiences of their sexual health? What are their experiences of intimate relationships?

All listed authors have substantially contributed to the manuscript and agreed to the final submitted version. J.F., J.M., L.‐L.J. and A.N. have been involved in every stage, from conceptualization and methodology development to data curation, analysis, reviewing and editing of the manuscript. J.F. has collected all the data and written the manuscript drafts. J.D. has contributed significantly to the writing process, including reviewing and editing to refine the final text. Collectively, the team collaborated on project administration and supervision, with each member bringing expertise in their respective areas to achieve the study's goals.

This study was conducted in accordance with the ethical principles embodied in the World Medical Association's Declaration of Helsinki (as revised in 2013) and was approved by the Swedish Ethical Review Authority on July 4, 2023 (Approval No. 2023‐03703‐01).

This qualitative exploratory study employed an inductive approach. Participants were recruited via convenience sampling. By using a number generator, an email with study information and a link to a declaration of interest in participation was sent out to a sample of members in a national lipedema association group in Sweden. The inclusion criteria were as follows: women aged ≥ 18 years who were diagnosed with lipedema and spoke Swedish fluently. Invitations were sent out to approximately 340 members in batches of 30–50 invitations. Ultimately, 18 women consented to participate; however, two withdrew without further explanation. Data were obtained through semi‐structured interviews conducted between October 2023 and February 2024. The research group developed an interview guide based on literature and clinical experiences, with open‐ended questions to structure and support the interviews. Supplementary questions were used to deepen the content and enrich the data collection. The questions aimed to encourage the women to share their personal experiences of sexual health and intimacy in relation to lipedema, including challenges and positive moments. By initiating a conversation about sexual health on a general level, participants may feel more comfortable responding (Taylor and Davis  2006 ). Thus, each interview began with a short introduction to the topic and aim of the study. Thereafter, the interviewer informed the participant that in a survey conducted in 2021 (Falck, Herbst, et al.  2024 ), many women with lipedema reported being distressed by or even avoiding sexual intercourse and intimacy due to their lipedema. Participants were then invited to share their experiences of sexual health and intimate relationships by answering the questions: Would you like to share how it is for you? Can you describe a specific situation that has been particularly difficult or has worked well? The following questions were asked to deepen the content: How did you feel then? What did you think then? What happened then? How did it turn out for you? What does it mean to you? Prior to all interviews, the research team reviewed and discussed the first three interviews to ascertain whether the questions and interview guide were well‐suited and addressed the research question. Despite minor adjustments to the in‐depth and follow‐up questions in the interview guide, the data from these three interviews were deemed adequate to be included in the study. All women were provided with their choice of interview approach. Five women were interviewed via phone, whereas 11 opted for video calls via Zoom or Microsoft Teams; none chose face‐to‐face interviews. Participants were informed that they could stop the interview at any time or skip questions without any negative consequences. The interviews were performed between October 2023 and February 2024. The first author (J.F.) conducted all interviews, with each woman being interviewed once. The 16 interviews were explorative and in‐depth, and the data collected were deemed to be rich enough to answer the research question. The interviews lasted 35–63 min, were recorded using a Dictaphone and were transcribed verbatim by J.F. and a professional transcriptionist. For data analysis, conventional content analysis was performed according to Hsieh and Shannon ( 2005 ). This type of analysis, also described as inductive category development, is appropriate when the existing theoretical framework or research literature on a phenomenon is limited. In this analysis process, researchers avoid using preconceived theories, instead allowing the categories to be derived from the data (Hsieh and Shannon  2005 ). The data were processed using the software NVivo. The data were primarily analysed by J.F., with each step regularly and transparently discussed with the other co‐authors. First, the data were repeatedly read to obtain a sense of the whole. Subsequently, the data were read word by word to derive codes by highlighting the words and sentences that seemed to capture key thoughts and concepts. During these processes, notes from reflections on the data were made and used to code and categorise patterns. Next, labels for codes emerged based on how different codes were related and linked; this became the initial coding scheme. Subsequently, subcategories were created to organise and group the codes into meaningful clusters. The researchers continuously returned to the data to ensure that the subcategories accurately captured the meaning, including differences and similarities conveyed in the text. This process involved revising and refining the codes and subcategories and organising the large number of subcategories into smaller numbers of main categories. The data were analysed in Swedish. The themes and the quotations were translated into English when presenting the findings. This study was approved by the Swedish Ethical Review Authority on July 4, 2023 (approval no. 2023‐03703‐01). A selected sample was recruited to prevent an unmanageably high number of participants and the need for exclusion. All participants were provided with written information regarding the study, the nature of voluntary participation, handling and confidentiality of the data and how the study findings would be presented. Additionally, the participants were informed that they could leave the study at any time without requiring justification. If the questions led to discomfort during interviews, the participants could contact and receive emotional support from a named physician who was knowledgeable about lipedema but not involved in this research project. Pseudonyms were used to anonymise the participants' quotations in the presentation of the findings. The Consolidated Criteria for Reporting Qualitative Research (COREQ) were followed to promote a transparent and rigorous reporting of this qualitative research (Tong et al.  2007 ). By these standards, it is important to acknowledge the background of the research teams. The research team comprises four female researchers (J.F., A.N., L.‐L.J., and J.D.) and one male researcher (J.M.). The first author (J.F.) is a PhD candidate and registered midwife/specialist nurse with clinical expertise in sexual and reproductive health. A.N., L.‐L.J. and J.M. are registered nurses with PhD degrees. J.D. is a psychologist with a PhD degree. No researcher had any personal relationship with the study participants. When the interviews were scheduled (via phone call), J.F. informed the participants about her profession, lipedema research, clinical experience in sexual health and non‐clinical experience with lipedema.

Sixteen women aged 47–78 years (mean: 60 years) participated in this study. All except for three women were in a relationship. Of these women, 50% attained high school education, and 50% had upper secondary or university education. Lipedema stages varied: one woman had stage 1 lipedema, whereas five and 10 women had stage 2 and 3 lipedema, respectively. Five women were diagnosed with lipedema within the last 5 years, whereas 11 were diagnosed 6 years ago or more. Four main categories describing the women's experiences of sexual health and intimate relationships were identified in the analysis—namely, Being burdened by body shame , Being hindered by an aching and heavy body , Being torn between desire and avoidance and Being affected by what is said and what is left unsaid . These categories included nine subcategories illuminating the complex interplay between psychological, emotional, physical and relational aspects of sexual health and intimate relationships (Figure  1 ). Illustration of the four main categories (blue boxes) and nine subcategories (white boxes). Several women conveyed a dark view of how they generally felt about their bodies, which had a profound impact during intimate situations. The women expressed struggles with self‐acceptance, which were often influenced by societal pressures that dictate what a beautiful and sexy woman should look like. None of the women spoke positively about their physical appearance, and they expressed deep dissatisfaction with their appearance using extremely negative words, describing their bodies as ‘ horrible ’, ‘ disgusting ’, ‘ ugly ’ and ‘ extremely fat ’. The women also found it particularly challenging to view their bodies with any sense of appreciation and described how their bodies seemed to stand in the way of intimacy and sexuality. I mean, many things hinder sexuality and intimacy because the body is what it is—both unattractive and, according to society's way of seeing things, simply too big…. Sofia, stage 3 I mean, many things hinder sexuality and intimacy because the body is what it is—both unattractive and, according to society's way of seeing things, simply too big…. Sofia, stage 3 Furthermore, the women expressed deep self‐blame for allowing their body appearance to affect their sense of self‐worth during intimate situations profoundly. They often felt frustrated with themselves for having these negative thoughts, knowing rationally that their value should not be tied to their appearance. The women questioned themselves for being unable to accept themselves, which was described as an inner conflict. One woman described it as follows: I should have come further in my process of liking and accepting myself. So, I also feel ashamed that I think the way I do. It creates a dual conflict within me. Lilly, stage 3 I should have come further in my process of liking and accepting myself. So, I also feel ashamed that I think the way I do. It creates a dual conflict within me. Lilly, stage 3 Body dissatisfaction became even more pronounced among women during intimate situations when their bodies were more exposed. The shame of being naked in front of their partners was a recurring theme. The women feared being judged and were worried about how their partners would react to their naked bodies. Just the thought of being nude during intimate situations felt deeply uncomfortable to them. One woman, who had been married to the same partner for over three decades, expressed the following: I have never exposed myself—naked—in front of my husband to say, ‘Ah, here I am,’…. I have never done that. Because I have been so ashamed of my body. Christina, stage 2 I have never exposed myself—naked—in front of my husband to say, ‘Ah, here I am,’…. I have never done that. Because I have been so ashamed of my body. Christina, stage 2 The women also reported being hindered from performing activities because of feelings of insecurity and discomfort with their bodies and adopted various strategies to avoid showing nakedness. One woman described such challenges during the beginning of a new relationship as follows: I covered up with different clothes at night and things like that. I remember it being very chaotic. Not wanting to go to the bathroom in only underwear without wrapping myself up… Elisabeth, stage 3 I covered up with different clothes at night and things like that. I remember it being very chaotic. Not wanting to go to the bathroom in only underwear without wrapping myself up… Elisabeth, stage 3 The women felt restricted in their ability to express their sexuality through clothing, a challenge pointed out by almost all interviewed women. While clothing played a vital role in self‐expression, attraction and sexuality, concerns about body image and practical difficulties associated with undressing during intimate situations posed significant obstacles. They also described practical issues; for instance, wearing compression garments often created barriers to intimacy because they inhibited sexual spontaneity and rendered undressing cumbersome. These obstacles could make the women less interested in being intimate. It's frustrating when you can't wear the clothes you want because your legs are swollen. And when you wear clothes you don't feel comfortable in, you don't feel attractive either, and then you don't feel like having any intimate contact. Eva, stage 3 It's frustrating when you can't wear the clothes you want because your legs are swollen. And when you wear clothes you don't feel comfortable in, you don't feel attractive either, and then you don't feel like having any intimate contact. Eva, stage 3 The women identified physical pain as an essential factor that restricted their ability to engage in and enjoy sexual activities. Women conveyed that certain positions caused more pain than others, particularly those involving the legs, such as kneeling. Being touched, including even only sitting and cuddling on the couch, light pressure, and pinching, was often experienced as uncomfortable and painful: And then they've (partners) pressed on my legs, and just touching them makes me scream because it hurts so much. And… it's hard to have sex under those conditions. Eva, stage 3 And then they've (partners) pressed on my legs, and just touching them makes me scream because it hurts so much. And… it's hard to have sex under those conditions. Eva, stage 3 Swelling and heaviness were identified as significant barriers to intimacy and sexual activities. Having heavy legs and the accumulation of fat tissue made it difficult for partners to get close, and this physical discomfort limited their ability to vary sexual positions. Some women attributed physical challenges to their heavy bodies and the amount of fat tissue, and they described difficulties in being on top of their partners or in getting their partners to be close enough during vaginal penetration. The women also raised issues regarding lactic acid buildup and persistent fatigue, often accompanied by a sense of brain fog. Their experiences of having low physical endurance, described as their bodies being thoroughly exhausted, further affected their ability to perform sexual activities: Well, you feel clumsy. You can't perform everything you might wish you could in bed… You might not be as flexible anymore… You do not have the same energy, and your legs feel like lead weights. Linda, stage 1 Well, you feel clumsy. You can't perform everything you might wish you could in bed… You might not be as flexible anymore… You do not have the same energy, and your legs feel like lead weights. Linda, stage 1 While the women faced both emotional and physical difficulties in engaging in intimate relationships owing to lipedema, they still expressed a deep longing and yearning for closeness and intimacy. Independent of being single or in a relationship, they described a loss and sadness over the lack of physical connection in their lives. The women expressed a yearning to feel desired, lie close to a partner, and be lovingly touched. It's a great sorrow. I don't think it's about the sex itself; it's really about this closeness, the intimacy. To get a hug or have someone touching you. When you don't even want anyone to touch you, even though you still want it. Lilly, stage 3 It's a great sorrow. I don't think it's about the sex itself; it's really about this closeness, the intimacy. To get a hug or have someone touching you. When you don't even want anyone to touch you, even though you still want it. Lilly, stage 3 The women also conveyed their avoidance of sex and intimacy. Some women expressed a firm ‘no thanks’ to their partners. The women did not usually initiate sex or intimacy. When their partners took the initiative to have sex, they coped with the situation by adopting various avoidance strategies. I often don't go to bed at the same time as my husband. So, you avoid… you eliminate one opportunity… for sex. Lena, stage 3 I often don't go to bed at the same time as my husband. So, you avoid… you eliminate one opportunity… for sex. Lena, stage 3 During periods of being single, the women expressed feelings of fear or reluctance to meet someone new. They described this as resigning themselves to pursuing a new partner and tended to ‘turn off’ their desire. But I have turned that part off because I think, ‘No, that's not going to happen, and I can live with that.’ And I have no sexual feelings. I simply have no needs. Lilly, stage 3 But I have turned that part off because I think, ‘No, that's not going to happen, and I can live with that.’ And I have no sexual feelings. I simply have no needs. Lilly, stage 3 The women revealed not talking about sex and intimacy with their partners and reflected on how this lack of communication might affect their relationships. They expressed difficulties in discussing sexual matters, which, as they experienced it, considerably affected both their relationships with their partners and their sex lives. The women expressed fear of opening up, and much remained unspoken and shrouded in ambiguity between the partners. The women raised concerns about what was going on in their partners' minds and tried to interpret the behaviours and comments of their partners; however, they still wanted to avoid what they expected to be uncomfortable conversations. They also expressed that their partners probably did not know how much self‐shame and negative self‐perception they had and that revealing it might do more harm than good. If I said, ‘I don't like my body,’ it would be like I was fishing for discussion or feedback. And… it might end up with something I don't want to hear. Malin, stage 3 If I said, ‘I don't like my body,’ it would be like I was fishing for discussion or feedback. And… it might end up with something I don't want to hear. Malin, stage 3 Not even in healthcare settings was sex and intimacy addressed. The women reported having numerous and varied interactions with healthcare professionals over the years; however, their sexual health was addressed in none of these encounters. Despite discussing a range of health issues, sexual well‐being remained a primarily overlooked topic. It has never been brought up… there was a doctor who knew about my situation… and I met a lymphatic therapist and others. But there was nothing about sex. Sonja, stage 2 It has never been brought up… there was a doctor who knew about my situation… and I met a lymphatic therapist and others. But there was nothing about sex. Sonja, stage 2 The partners' approach was described by the participants as having a strong influence. Any weight criticism by a partner, including painful comments about becoming ‘too fat’ and offhand remarks suggestive of the need to lose weight, was profoundly hurtful and left lasting scars. Accordingly, the women became even more aware of their bodies, which negatively influenced their self‐image and sexual confidence. This criticism created significant barriers within couples, making the women feel inhibited and less able to embrace intimacy: Then you get these jabs about being overweight and needing to lose weight. And that's why you avoid sex after that because it hurts so much emotionally… Sofia, stage 3 Then you get these jabs about being overweight and needing to lose weight. And that's why you avoid sex after that because it hurts so much emotionally… Sofia, stage 3 The women also described positive sexual experiences and the impact of having an attentive and loving partner. The emotional tone of the relationship played a crucial role, as did the degree of closeness and relational connection that they shared. Support from partners who communicated desire and expressed feelings of attractiveness to the women significantly increased the sense of safety and trust: I… feel safe… because he has said that he enjoys it when we have sex. And he touches me—if he hadn't touched me on the legs where I have my lipedema, I might have found it more difficult. But he shows that he likes me and that he gets aroused. Jessica, stage 3 I… feel safe… because he has said that he enjoys it when we have sex. And he touches me—if he hadn't touched me on the legs where I have my lipedema, I might have found it more difficult. But he shows that he likes me and that he gets aroused. Jessica, stage 3 The women also emphasised the importance of having interested partners who understood and responded to their emotional and physical discomfort (i.e., partners who were willing to listen and be attentive to their needs and pain). This attentiveness fostered a sense of safety and connection, making the expression of feelings and engagement in intimacy easier. … when we tried to have sex, he just ‘Ouch.’ ‘Can I do this? Does it hurt?’ or ‘Can you be in this position? Can you do it this way?’ So, there were many questions about how to avoid pain. Cecilia, stage 3 … when we tried to have sex, he just ‘Ouch.’ ‘Can I do this? Does it hurt?’ or ‘Can you be in this position? Can you do it this way?’ So, there were many questions about how to avoid pain. Cecilia, stage 3

According to the World Health Organization ( 2024 ), sexual health is a state of physical, emotional, mental and social well‐being in relation to sexuality. Sexual health includes that individuals experience their sexual lives positively, respectfully, and free from sexual problems, that is, difficulties or concerns related to aspects that can affect a person's sexual well‐being or negative experiences such as sexual coercion, violence or discrimination. As the World Health Organization states, sexual health cannot be defined or understood without consideration of sexuality. Sexuality includes sexual behaviours, such as how we dress, how we feel about ourselves, our relationships with others and how we communicate with those around us. It encompasses experiences and expressions of attraction, desires, thoughts, beliefs and attitudes. Sexuality is dynamic, varies across individuals and life stages (World Health Organization  2024 ) and is closely related to intimate relationships, that is, relationships characterised by love, affection and romantic closeness (Prager  1997 ). Intimate relationships can be strengthened by different sexual behaviours, such as being naked with partners, giving and receiving loving physical touch, and being joyfully engaged in sexual activities (Prager  1997 ). Having good sexual health requires a positive and respectful approach to sexuality, including having access to sexual health information and care, as well as having opportunities to communicate sexual problems with partners and healthcare providers (World Health Organization  2024 ). Nurses and midwives play a unique role in sexual health care due to their interactions with patients in various settings like public health and primary care. As frontline healthcare providers, these healthcare professionals are often the first point of contact for sexual health concerns and play a key role in offering education, guidance and support (Fennell and Grant  2019 ). For individuals with a chronic disease, sexuality is a crucial aspect of quality of life, with intimacy serving as an important part of communication in the relationship (Verschuren et al.  2010 ). Disease‐related health problems such as pain, reduced mobility, depression and fatigue negatively affect women's sexual health (Areskoug‐Josefsson and Öberg  2009 ). Lipedema is a disease that primarily affects women (Herbst et al.  2021 ). The main symptoms include swelling, heaviness, bruising and pain in the affected areas, which worsen as the disease progresses (Falck et al.  2022 ). Lipedema is often mistaken for obesity and, therefore, considerably overlooked in health care (Ernst et al.  2023 ). Consequently, many affected women live with health problems for decades before being correctly diagnosed (Falck et al.  2022 ). Lipedema affects approximately 10% of the female population. However, due to underdiagnosis, statistical data must be interpreted critically (Kruppa et al.  2020 ). Female hormones appear to play a role in disease onset, given that the symptoms of lipedema often debut during puberty, pregnancy or menopause (Al‐Ghadban et al.  2021 ). A genetic predisposition has been suggested, as women with lipedema often have a female relative affected by lipedema (Paolacci et al.  2019 ). Lipedema is diagnosed through medical history and physical examinations, including inspection and palpation (Kruppa et al.  2020 ). The disease is classified into five types based on fat distribution, affecting areas from the hips to the lower legs and arms. Disease progression is divided into three stages, ranging from smooth skin with enlarged fat tissue to severe deformities due to tissue overgrowth (Herbst et al.  2021 ). Available treatments for lipedema aim to reduce symptoms, improve quality of life and prevent disease progression (Herbst et al.  2021 ). Conservative approaches include compression therapy and lymphatic drainage (Hardy and Williams  2017 ), whereas liposuction can reduce pain and swelling (Amato et al.  2024 ). However, limited awareness among healthcare providers and a lack of clinical guidelines often hinder proper care (Czerwińska et al.  2022 ; Falck, Nygårdh, et al.  2024 ). The complex interplay between the physical and psychological aspects of lipedema negatively impacts health and quality of life (Dudek et al.  2018 ). Living with lipedema also negatively affects social life. In a previous study on health‐related stigmas (i.e., experiences of negative attitudes and discrimination based on one's health condition), many women reported being distressed by or avoiding social activities, including sexual intercourse and intimate relationships, due to their lipedema (Falck, Herbst, et al.  2024 ). Furthermore, in a qualitative study, women with lipedema described a negative willingness to engage in romantic relationships (Dahlberg et al.  2024 ). While these findings provide some insight, a more comprehensive understanding of how women with lipedema experience their sexual health and intimate relationships is needed.

To our knowledge, this is the first study to explore sexual health and intimate relationships in women with lipedema. The findings showed that women's experiences were multifaceted, involving psychological, physical and relational aspects. One of the main study findings was the women's experience of severe dissatisfaction with their body appearance and their struggles with body shame. The women experienced their bodies as being so unattractive that it affected their willingness to engage in and enjoy intimate relationships. The participants in this study described it as especially challenging to expose themselves naked in front of their partners. One of the ways in which this deep body shame can be better understood is in the context of weight stigma—the process of being marked negatively or devalued because of increased body weight (Nutter et al.  2024 ). Individuals who experience weight stigma directly (being fat‐shamed) or indirectly (via observation of others being fat‐shamed) may be susceptible to internalising weight bias—a process in which a person adopts negative attitudes toward higher‐weight individuals and devalues oneself (Puhl et al.  2018 ). Weight bias internalisation, among many negative consequences on physical and mental health, has been repeatedly connected to lower body satisfaction and increased body shame (Bidstrup et al.  2022 ). A research review has shown that women with excessive fat tissue are perceived as less attractive and less likely to be chosen by potential partners. Furthermore, when women internalise those negative stereotypes, they may also see themselves as less attractive and a poorer match compared to their perception of their partner's ideals (Côté and Bégin  2020 ). The findings of our study emphasise the impact that societal and interpersonal attitudes towards body weight and their internalisation have on women's emotional well‐being, sexual health and intimate relationships. For women with lipedema, these experiences may lead to a cycle of low self‐esteem, vulnerability and withdrawal from romantic or sexual engagement. Many women encounter nurses and midwives throughout their lives, often already during adolescence. As such, these healthcare professionals can play a crucial role in the early detection of lipedema. Recognising this chronic and burdensome disease early can prevent misdiagnosis, which may also reduce weight‐related stigmas. Another important finding of this study was the experience of physical burdens in sexual activities and intimacy. The women in this study described even gentle touch as uncomfortable due to pressure‐induced skin pain. Pain is common in lipedema, affecting nearly every woman with lipedema (Falck et al.  2022 ). Pain can also contribute to anxiety regarding intimacy and worries about discomfort, which may further diminish sexual interest. Similar results have been found in a study among women with fibromyalgia wherein women described hesitating to engage in sex due to pain (Santos‐Iglesias et al.  2022 ). Moreover, in the present study, the women conveyed that fatigue, a hallmark of lipedema, often reduced their sexual desire and energy for intimacy. Similarly, research on multiple sclerosis, a chronic degenerative and inflammatory disease, showed significantly increased sexual dysfunction (issues across any phase of the sexual response cycle) in female patients with higher fatigue levels (Nazari et al.  2020 ). This highlights the broader impact that fatigue has on women's sexual health across various chronic diseases. Furthermore, the women in the present study expressed that heaviness and swelling in the legs and arms limited comfort and flexibility, making certain sex positions challenging to manage. A previous study confirmed that a larger body and increased fat tissue can hinder certain positions, which, for example, may obstruct vaginal penetration by the male partner and provide the couple with fewer options when trying to find comfortable positions during intercourse (Oliveira et al.  2018 ). The findings of the present study highlight significant clinical implications as these physical hindrances in intimacy are important for nurses and midwives to acknowledge. Moreover, physical barriers to sexual intercourse can be addressed by physiotherapists, physicians, sexologists and occupational therapists, who can offer support by improving mobility, managing pain and supporting the adaptation of sexual practices. One of the key findings of this study was the internal conflict experienced by the women, characterised by being torn between desire and avoidance, revealing the complexities surrounding their experiences of intimacy. The women described longing for closeness but simultaneously withdrawing from it due to body image issues and the physical and psychological discomfort that intimacy may invoke. This struggle raises essential questions about psychological consequences. For instance, feelings of tension between desire and avoidance contribute to increased feelings of anxiety or depression in women with endometriosis, a chronic disorder associated with inflammation and pain (Melis et al.  2015 ). As such, the findings of this study suggest that these unresolved internal conflicts regarding intimacy may increase emotional distress, leading to a cycle of withdrawal and isolation that can impact overall well‐being. Clinically, healthcare professionals need to address these psychological aspects of sexual health in women with lipedema. In the present study, the women described the importance of the partners' approach. The women expressed that being criticised for their weight by their partners was hurtful. Weight criticism between partners is consistently associated with poorer relationship functioning, reduced sexual intimacy, and less constructive communication (Carels et al.  2020 ; Schmidt et al.  2023 ). Conversely, the study participants also described positive sexual experiences, wherein a close, loving partner who was open and responsive to the woman's needs in the sexual situation and expressed attraction to her created safety and trust. This observation is supported by the findings of a previous study wherein women with lipedema described that the capability to enjoy sex and be sexually active was connected to the feeling that their spouses found them attractive (Melander et al.  2021 ). Another study on women with lipedema showed that women in long and stable relationships often felt supported and secure, whereas single women found intimate relationships more challenging (Christoffersen and Tennfjord  2023 ). The findings of the present study highlight the crucial role of a partner's attitude in shaping intimacy and relationship satisfaction for women with lipedema, suggesting that partner support and communication play a key role in mitigating the negative psychological and relational effects of lipedema. In this study, the category ‘The strain of not talking about it’ revealed a lack of dialogue regarding sexual health in healthcare settings. Although an important part of the nurse's role is to address patients' sexual health concerns, previous research has, in line with what the findings of the present study indicate, shown that nurses tend to avoid bringing up sexual matters with patients (Fennell and Grant  2019 ). The reasons for this avoidance have been described as a lack of knowledge on how to conduct such a dialogue, having a perception of sexual health as being something private, feeling discomfort in discussing sexual health and a lack of time, responsibility and support from the healthcare organisation they work within (Fennell and Grant  2019 ). A common misconception is that healthcare professionals overall believe they must be experts in sexual health to address it effectively. However, not all providers are expected to be able to answer all questions; nonetheless, there is a need to be open to receiving and addressing these questions (Taylor and Davis  2006 ). By creating a comfortable space for discussing sexuality, healthcare professionals can identify and address concerns, fostering a proactive approach to sexual health care. The Ex‐PLISSIT model provides a framework for nurses in primary care to address patients' sexual health concerns by encouraging nurses to engage in reflection and open dialogues with patients to better understand and meet their individual needs (Taylor and Davis  2006 ). First, ‘Permission (P)’ encourages individuals to share concerns and discuss sexual issues openly. After that follows ‘Limited Information (LI)’, meaning providing information tailored to the patient's needs. These two levels can be offered by any healthcare provider. The third level, ‘Specific Suggestions (SS)’, offers more tailored strategies or interventions, whereas the final level, ‘Intensive Therapy (IT)’, refers individuals with complex needs to specialists for comprehensive care and therapy. The Ex in Ex‐PLISSIT stands for extended or explicit permission, meaning emphasising repeated permission from patients to discuss sensitive issues, ensuring continuous, open dialogue throughout the care process. The model includes the requirement to review all patient interactions and incorporate reflection to increase self‐awareness by challenging assumptions (Taylor and Davis  2006 ). In summary, this study highlights the profound negative experiences of body image issues, weight stigmas and physical challenges on sexual health and intimate relationships in women with lipedema. This underscores the importance of addressing both psychological and physical aspects of intimacy in clinical practice to prevent withdrawal and emotional distress among affected women. Healthcare professionals, especially nurses and midwives, have in their role crucial opportunities to foster open dialogues about sexual health and provide tailored interventions to effectively support women with lipedema and their partners. Education on lipedema, including its impact on daily life and experiences of sexual health and intimate relationships among affected women, is essential for providing better care. The study participants were Swedish, middle‐aged or older, heterosexual women. This homogeneity among participants means that the experiences of younger women and women with diverse ethnic backgrounds or different sexual preferences were underrepresented. Furthermore, the attrition rate (only 16 of approximately 340 invited women consented to participate) raises concerns regarding the sample's representativeness, which may limit the transferability of the findings. However, the rich and detailed data obtained from the participants reinforced the trustworthiness of the findings, which provided deep insights into the personal experiences and challenges of the study participants. Additionally, the clinical background of the interviewer (J.F.) adds credibility to the findings, as the interviewer's expertise in sexual health likely contributed to establishing a trustful dialogue with participants and ensuring relevant follow‐up questions. This study provides new insights into the sexual health and intimate relationships of women with lipedema. Nevertheless, several avenues for further research may expand the understanding of this topic. First, exploring the partners' perspective is needed, as some of the experiences described by the women in this study were influenced by their partners' approach and support. Gaining more knowledge on this aspect may help identify strategies to provide better support to the couple, which may enhance relationship quality and the overall well‐being of both the woman and, if needed, her partner. Additionally, it is important to explore the experiences of younger women with lipedema. Research should examine how societal beauty standards and norms about bodies in different cultural contexts impact these women's self‐esteem, body image and willingness to engage in intimate relationships as well as what support these younger women need to cope effectively with the issues that may arise. Finally, future studies should explore the effectiveness of interventions and support strategies aimed at improving sexual health and intimate relationships for women with lipedema, where developing alternative approaches, such as providing information and guidance through digital platforms, could be a potential avenue. This research could be useful for healthcare professionals to understand the challenges that women with lipedema may face regarding their sexual health and intimacy. Addressing these issues in health care can help reduce stigmas, promote body acceptance and support their overall well‐being. An important direction of clinical practice involves the need for healthcare professionals to invite a dialogue about sexual health, wherein an effective strategy could be using the Ex‐PLISSIT model.

Informed and written consent was obtained from all participants.

Understanding the sexual health experiences of women living with a chronic condition is crucial in improving health care and enhancing their well‐being (Kingsberg et al.  2019 ). Lipedema, characterised by an abnormal accumulation of subcutaneous fat, is a chronic but often unrecognised disease that affects women worldwide (Kruppa et al.  2020 ). The disease causes pain, heaviness and easy bruising in the affected areas (Herbst et al.  2021 ) and is often accompanied by health problems that significantly reduce health‐related quality of life (Dudek et al.  2016 ; Falck et al.  2022 ). Furthermore, stigmatisation and negative feelings about body appearance constitute challenges in social life among women with lipedema (Dahlberg et al.  2024 ). Still, how women with lipedema experience sexual health and intimate relationships remains unknown.

The authors declare no conflicts of interest.