At the Lipedema Foundation, we believe that understanding the lived experiences of women with Lipedema is critical to advancing care and support. That’s why we’re excited to highlight the work of Johanna Falck, a nurse, midwife, and PhD at Jönköping University in Sweden, whose groundbreaking study sheds light on an often-overlooked dimension of this condition: sexual health and intimate relationships.
In her recently published paper, Experiences of Sexual Health and Intimate Relationships in Women With Lipedema: A Qualitative Study (Journal of Advanced Nursing, 2025) Falck and co-authors explores how women with Lipedema navigate complex emotional landscapes marked by body shame, stigma, and silence. Through in-depth interviews with women living with Lipedema, her study offers powerful insights into how the condition impacts not only physical comfort and mobility, but also identity, partnership, and the ability to connect emotionally and physically.
With a strong clinical background in women’s health and a deep commitment to amplifying marginalized voices, Falck brings both empathy and expertise to this sensitive topic. Her research is one of the first to explicitly examine sexual health in women with lipedema, helping to fill a critical gap in the literature—and, more importantly, to break the silence around issues that profoundly shape quality of life.
To learn more, we invited Johanna to participate in a Q&A, where she shared what inspired her to explore this topic, what she discovered through her research, and why she believes these conversations are essential for improving care and understanding.
From Midwife to Researcher: What Led Johanna Falck to Study Lipedema and Intimacy
What inspired you to focus your doctoral research on Lipedema, and specifically on sexual health and intimate relationships?
I was 24 years old when I started working in women’s healthcare as a newly graduated midwife. My first job was in a labour clinic, where I saw so many emotions—hope, fear, strength, pain, and deep exhaustion. Things could change in an instant, and I was constantly amazed by the courage and resilience of the women I helped. That’s where my passion for women’s health began, and where I realized just how strong women really are.
Years later, when I began teaching at the School of Health and Welfare at Jönköping University, I learned about Lipedema. Even after all my years in clinics and caring for women, I had never heard of it. It surprised me how little was known about something that causes so much suffering. My research journey started when a local Lipedema association reached out to Professor Jan Mårtensson. He saw that there was a serious lack of research in this area and launched a doctoral project that I was admitted to. We realized that it was important to explore health and quality of life among women with lipedema.
Through my research, I’ve listened to many women share how Lipedema has affected their lives. The more I learned about the women’s experiences of stigma and body shame, and how they avoided social activities and even intimacy, the more I wanted to explore it on a deeper level. To my knowledge, there had been no published studies on sexual health and Lipedema. Consequently, we decided to conduct in-depth interviews with these women to gain a better understanding of how they experience their sexual health and intimacy and what it means to them.
This is a deeply personal and often unspoken topic—what drew you to explore it through qualitative research?
I chose to conduct interviews because we wanted to truly understand the women’s personal experiences—how they feel, how they think, and how Lipedema affects their lives on a deeper, emotional level. Sexual health is a sensitive and deeply personal topic, and I felt that structured surveys or quantitative methods wouldn’t capture the full complexity of their experiences.
Through in-depth interviews, the women had the space to express themselves in their own words, at their own pace. This method allowed for a level of openness and nuance that would be difficult to achieve through other approaches. It also gave room for emotions, reflections, and details that often remain hidden in more structured forms of research. For me, it was important not just to gather data, but to really listen—and qualitative interviews made that possible.
How did your background in nursing and midwifery influence your perspective as a researcher?
My clinical background in nursing and midwifery was an advantage in this research. Having spent many years speaking with women about their bodies, health, and sexuality, I felt confident and comfortable addressing topics related to sexual health, something that can often be sensitive or even taboo.
Listening Deeply: What Women Shared About Intimacy and Lipedema
What was it like to conduct these interviews—did participants respond openly to the topic, or did it take time to build trust and rapport?
Building trust was essential for these interviews, and I believe my clinical experience helped create a safe and respectful space where the women felt seen and heard. I’m deeply grateful for their courage to open up. Many of them had never spoken about their sexual health or intimacy in this way before.
Although the interviews were not intended to provide support or counseling, several women expressed that it was a relief to put their experiences into words. For those who needed further support, I provided guidance on where they could find it..
These interviews reminded me of the importance of listening, not just as a researcher, but as a healthcare professional. It also reinforced how essential it is to create more open and supportive environments for women to talk about their sexual health.
Were there moments in the interviews that felt particularly powerful, surprising, or emotionally impactful to you as a researcher?
It was especially moving and insightful to hear the women’s life stories and to understand how Lipedema had affected them, not only in their younger years but also how their experiences had evolved over time. It was also very revealing to learn how incredibly difficult it was for many of them to open up to their partners about how they feel. That’s when I truly realized how deeply rooted the stigma is.
How did you approach translating such sensitive, personal narratives into formal research findings while honoring the participants' voices?
This was a challenge. Although I did the main analysis, we were a research team that worked together to interpret, translate, and capture the essence of the interviews. Also, I discussed the content more broadly with English-speaking colleagues, and we also used a professional translation service to ensure accuracy and clarity.
Perhaps most importantly, I handled the data with great respect. I anonymized all personal information and ensured that the women could not be identified. Throughout the analysis and writing process, I reminded myself that behind every quote was a real person who had entrusted me with her story. I aimed to represent their voices with honesty, sensitivity, and integrity. In this way, I sought to honor their contributions not only as data but as lived experiences that matter.
What Needs to Change: Rethinking Support for Women with Lipedema
What were the most important or unexpected insights that emerged from your analysis?
Based on my earlier research, it wasn’t surprising that the women carried body shame. However, I was overwhelmed by how negatively they spoke about their own bodies—often with harsh and painful words. The women seemed to carry such a strong sense of shame that many found it impossible to talk about it with anyone at all.
At the same time, one of the more unexpected insights was how many women described having partners who were supportive, caring, and genuinely unbothered by their appearance. Several women shared that their partners actively showed that they found them attractive and expressed love and appreciation. But even then, many of the women struggled to believe it. The internalized stigma and body shame were so strong that it created a gap between what they were told and what they could emotionally accept.
This contrast between external acceptance and internal rejection was one of the most powerful findings, and it speaks to how deeply rooted the stigma around Lipedema and body image can be.
How do you think lipedema affects women's identities and relationships in ways that healthcare—and society—often misses?
Lipedema affects much more than the body—it impacts how women perceive themselves, their relationships with others, and their overall experience of life. Many of the women I spoke with described feeling invisible, misunderstood, or misjudged—not only by healthcare professionals, but also by friends, family, and society at large. Their symptoms were often dismissed as a weight issue or personal failure, which led to feelings of shame, isolation, and self-blame.
Over time, this can profoundly shape a woman’s identity. Many internalize stigma and develop a deeply negative body image, which in turn affects their confidence, sexuality, and social lives. Even in close relationships, women often hesitate to express their needs or show vulnerability. Some described avoiding intimacy or struggling to believe their partner’s affection was genuine, because their self-perception had been so damaged.
Healthcare often focuses on visible symptoms and measurable outcomes but misses these emotional and relational impacts. Society, too, tends to overlook or simplify the struggles of women living with Lipedema. What’s missing is a more holistic understanding—one that sees the person, not just the condition. That’s something I hope this research helps bring into clearer focus.
What should healthcare professionals, researchers, or support organizations take from your findings?
We need to increase awareness and knowledge about Lipedema, especially to ensure earlier recognition and diagnosis. But this alone isn’t enough. We also need to deepen our understanding of how Lipedema affects everyday life, not only from the physical perspective but also when it comes to identity and sexuality. These aspects are often overlooked, yet they are central to the overall well-being.
Healthcare professionals must be willing to open up space for honest, respectful conversations about the body, intimacy, and sexual health. Many women feel silenced or ashamed, and this silence can be detrimental. It’s important that we not only acknowledge their experiences but also actively support them—and, when needed, their partners—in building a safe, respectful ground for sexual well-being.
What Needs to Change: Rethinking Support for Women with Lipedema
Why do you think sexual health is still such a neglected topic in research on chronic illnesses like lipedema?
Overall, sexual health is often seen as a private or taboo topic, and healthcare tends to focus more on visible, physical symptoms like pain and mobility. Professionals may avoid discussing sexual health because they lack knowledge on how to approach it, feel discomfort, or face time and organizational pressures. There’s also a misconception that they must be experts to address sexual health effectively, but in reality, being open and willing to listen is what matters most. This avoidance means many women’s intimate and emotional needs remain unaddressed.
There’s also a broader societal stigma around women’s bodies and sexuality that makes it harder for these topics to be prioritized in research.
What types of support—educational, psychosocial, relational—do you think are most urgently needed for women navigating these issues?
Women with Lipedema should, if needed, be offered support that addresses both their physical and emotional challenges related to intimacy and sexual health.
Emotionally and psychologically, many require help to cope with deep body shame and internalized weight stigma, including counseling or therapy to manage anxiety, low self-esteem, and the internal conflict between longing for intimacy and avoiding it. This kind of support is crucial to help break the cycle of withdrawal.
Relationally, support for partners is essential—guidance on how to provide positive, non-critical encouragement that builds trust and feelings of attraction can make a significant difference. Couples counseling or education can improve communication about intimacy and sexual needs.
Physically, women need pain management strategies to reduce discomfort during touch and sexual activity, as well as assistance in managing fatigue and swelling that affect sexual desire and comfort. Access to physiotherapy, occupational therapy, or sexology services can help adapt sexual practices and find comfortable positions.
Additionally, educational support is vital for both patients and healthcare professionals, including raising awareness about lipedema and training providers to discuss sexual health comfortably and respectfully.
If you had funding or a platform to continue this work, what would you explore next?
I would focus on several important areas to deepen our understanding and improve support for women with Lipedema.
1) Exploring partner perspectives: I would explore the perspectives of their partners, since the women’s experiences are often shaped by how their partners respond and support them. Understanding the partner’s viewpoint could help develop strategies to support the couple, enhancing relationship quality and overall well-being.
2) Studying the experiences of younger women: I would also study younger women with Lipedema, examining how societal beauty standards and cultural norms impact their self-esteem, body image, and willingness to engage in intimate relationships. This could help identify what specific support younger women need to cope with these challenges effectively.
3) Effectiveness of Educational Interventions: I would investigate the effectiveness of different educational interventions and support strategies aimed at improving sexual health and intimacy for women with Lipedema. This might include exploring alternative methods, such as digital platforms, to provide information and guidance, making support more accessible.
What Needs to Change: Rethinking Support for Women with Lipedema
How has conducting this research shaped you personally or professionally?
Personally, it has heightened my awareness of the hidden struggles women face, especially around topics like sexual health that are often silenced. Hearing their stories taught me even more of the importance of empathy, patience, and creating safe spaces for vulnerable conversations.
Professionally, it strengthened my confidence as a researcher in discussing sensitive subjects openly. This journey has motivated me to continue advocating for more inclusive, compassionate, and holistic care for women.
What advice would you give to other researchers who want to explore sensitive or stigmatized health issues?
My advice is to approach such research with genuine respect, openness, and a humble attitude. Building trust with participants is essential—this means creating a safe and non-judgmental environment where people feel comfortable sharing their experiences. Being well-prepared to handle emotionally charged topics with sensitivity and ethics is also crucial. It’s important to listen actively, validate participants’ feelings, and ensure they know their voices matter. Additionally, collaborating with a supportive research team and seeking guidance from experts in qualitative methods can help navigate challenges. Ultimately, remember that exploring stigmatized issues is vital work that can lead to meaningful change; therefore, persistence and compassion are essential.
Information presented on the Lipedema Foundation website should not be considered, or used as a substitute for, professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.