Dear LipoCheckers,
When I was diagnosed with lipedema at the age of 19, I stood at the beginning of a journey that would lead me to deeply understand my own body. With this post, I want to share my personal journey through lipedema with you.
I open my heart to you about the symptoms that accompany me and my personal experiences with the various treatment methods that I have encountered along the way, including the decision for liposuction, and finally, the positive turn that compression garments have taken in my life.
My story with lipedema began just as I was stepping into adulthood – at the age of 19. Back then, knowledge of this condition was still a faint whisper in the wind, barely recognized by the general public. I stood before a reflection that began to change inexplicably, with pain and swelling enveloping my legs, particularly in quiet moments when I sat on a train or during long car rides. Even during my working hours, tied to a sedentary job at a desk, I felt the pain increasingly occupying space in my life. It was like a creeping process, a slow awakening to a constant pain that deeply affected my daily being and well-being.
In these early days of my journey with lipedema, I was like a leaf in the wind, driven by a storm of ignorance and pain, searching for an anchor amid the flood of emotions and physical sensations that overwhelmed me.
The journey that began with my legs spread like a silent fog and, after two years, also enveloped my arms – another chapter in my story with lipedema, one harder to bear than I ever expected.
At the beginning of this journey, I faced a mystery regarding my own reflection. The changes in my body were like a sealed book. I knew how my body was supposed to feel, and yet there was something unknown, something that didn’t fit my idea of normality. The path to diagnosis began with a visit to my general practitioner, who fortunately referred me directly to a vascular clinic. There, in a moment that would change my life, I was diagnosed with lipedema. It was both a shocking and a relieving moment, as my invisible enemy – the inexplicable pain and the strange changes in my body – suddenly had a name.
The first symptoms that haunted me were swelling and intense pain in my arms and legs, turning every movement, every step into a challenge. Climbing stairs became a battle against an invisible force that seemed to crush me with every step. My lipedema was diagnosed as stage two, indicating that the disease had not only made itself known but had already deeply infiltrated my life. Today, after years of trying various therapies and becoming an expert in self-management, I’ve learned to live with my symptoms. They are constant companions, always present, shaping my life, but I’ve learned to face them with dignity and strength.
On my journey with lipedema, I’ve not only learned to live with the pain but also to accept it as part of my story. Every day brings its own challenges, but also its victories. And although the symptoms will always be part of my life, I have learned that I am more than my diagnosis. I am a fighter, a survivor, and, most importantly, I am not alone.
Lipedema, a journey through a landscape marked by pain and pressure, reveals its challenges in two ways. First, there is the enlargement of fat cells, which not only stretches the tissue but also creates a sense of pressure and tension that goes far beyond mere discomfort. This change alone could be a burden, but many of us also struggle with fluid accumulation in the tissue, a lymphedema that adds further pressure to already strained areas. The lymphatic system, our natural way of cleansing and draining, seems to falter under this burden, leading to an intensified feeling of pressure.
The pain that accompanies lipedema has its roots in the diet-resistant fat cells and the creeping inflammation within the altered fat tissue. The accumulation of inflammatory substances irritates nerve endings, leading to increased sensitivity to pain, often manifesting as spontaneous and stabbing pain. As the disease progresses, fluid retention and pressure on the tissue increase, making the legs feel as if they might burst, leading to feelings of heaviness and tension, combined with pain upon touch.
The regions affected by lipedema are characterized by particular sensitivity. Even the slightest touches or bumps, which might barely be felt by others, leave us with bruises, as if they were silent witnesses to the inner battles we fight daily. The pain, however, isn’t confined to the tissue of the legs. In advanced cases, the unequal distribution of fat tissue leads to secondary conditions such as posture issues, foot deformities, or pronounced knock knees, opening up new sources of pain.
An anti-inflammatory diet, rich in nutrients like omega-3 fatty acids, antioxidants, fiber, vitamins, and minerals, can reduce inflammation in the body. Changing my diet positively affected weight reduction, thereby reducing the lymphatic pressure on fat tissue and contributing to pain relief. Inflammatory processes in the body are among the possible causes of swelling and pain in fat tissue, and an anti-inflammatory diet can significantly alleviate the symptoms.
Compression stockings help reduce pain by applying continuous pressure to the extremities. This pressure supports the veins, improves blood circulation, and prevents fluid from pooling in the legs. By stabilizing the vein walls, they reduce the load on the vessels, thereby minimizing swelling. Improved circulation and lymphatic drainage also reduce the accumulation of fluid in the tissue, which is often associated with pain and discomfort. Ultimately, effective relief for the legs, along with occasionally elevating them, results in noticeable pain reduction.
Although it is sometimes difficult to move when in pain, it is extremely helpful! As long as lipedema doesn’t significantly impair overall mobility, gentle physical activity can help alleviate symptoms. During exercise, the body releases endorphins, which can reduce the perception of pain – even a brisk walk in fresh air can help and improve mood. On days when my legs feel too heavy for a walk, a swim can work wonders. Swimming puts little strain on the joints, and the pressure of the water provides a pleasant massage for the body.
For more information and tips, you can find them in the LipoCheck app.
Over the years, I have embarked on an exploratory journey through various therapies, from manual lymphatic drainage to compression therapy and liposuction. Each of these treatments brought its own challenges, but together, they have not only led to a significant improvement in my symptoms and quality of life but have also given me a deeper understanding of my condition.
A significant part of my journey was the exploration of dietary therapy. The ketogenic diet proved particularly effective, almost like a key opening the door to a world without pain. This phase was challenging, but the effects were so overwhelmingly positive that every effort seemed worthwhile. After a break, I couldn’t return to this strict regimen and instead turned to an anti-inflammatory diet, especially the Mediterranean diet. It may not be perfect, but it currently offers me the best balance between well-being and quality of life.
While it is often said that diet doesn’t help much with lipedema since it isn’t “normal” overweight, this statement generally only applies to typical weight loss diets. These do help those affected by lipedema lose weight, but often only in the abdomen, chest, and face. Legs and arms often remain unchanged in size.
However, even that is beneficial, as coexisting overweight worsens lipedema and increases the risk of lipo-lymphedema. Those who completely and permanently change their diet – as some personal stories show – often experience an improvement in lipedema as well. Pain decreases, the tendency toward lymphedema diminishes, and the extremities’ circumference gradually reduces. When one “sins,” the pain often returns immediately, so maintaining healthy eating guidelines isn’t usually very difficult.
Psychotherapy: An Anchor for the Soul
The diagnosis of lipedema in my arms led me to psychotherapy – a step that proved to be one of the most important of my entire journey. The therapeutic work had a profound and lasting effect on me, one that continues even today, eight years later. It helped me navigate the emotional storms that accompany this condition and taught me to reconcile the conflict between body and soul.
The experience of liposuction, the surgical removal of fat cells, opened a new chapter of relief and changed body perception for me. For many patients, this procedure can mean significant relief from symptoms. For me, too, the surgeries brought a noticeable improvement: the pressure on the surrounding tissue decreased, the pain that had been my constant companion for so long noticeably subsided, and I experienced a significant improvement in quality of life, regaining some mobility and a sense of freedom.
It became clear to me that the healing journey does not end with the completion of surgeries. Every liposuction is more than just a medical intervention; it is a step on a longer path that requires continued therapy and self-care to prevent the redistribution of lipedema and maintain the achieved quality of life.
The genetic predisposition to lipedema remains even after surgery, meaning that life afterward is not entirely predictable. Hormonal changes, for example, can trigger a new flare-up and put the progress achieved at risk.
Despite these uncertainties, I am deeply convinced of the importance of liposuction. These procedures offer many of us significant relief and are a crucial step toward alleviating our symptoms. It is therefore unfortunate and incomprehensible that the costs of such surgeries – with few exceptions – are not covered by health insurance.
Between Function and Fashion: My Life as a Compression Model
For me, compression garments are far more than just a medical aid; they are a key to a more active and pain-free life and have become my personal path to self-healing and acceptance.
With compression clothing and the targeted pressure it exerts on the tissue, lymph flow is supported, helping to reduce the pain and swelling that comes with lipedema. While compression garments cannot cure lipedema itself, they enable me to live my day more actively and with fewer symptoms.
My Role as a Compression Model and Health Influencer
In my role as a compression model and health influencer, I have the unique opportunity to demonstrate that compression garments can be not only functional but also fashionable and stylish. I am committed to breaking the stigma often associated with these aids and showing that they not only provide support but can also be part of a stylish outfit. Addressing compression garments in a fashionable way has contributed significantly to my well-being and strengthened my self-confidence in daily life.
Tips for Comfort with Compression
Compression clothing, especially in extreme temperatures, can be challenging. But there are tricks that make wearing it more comfortable. On hot days, baby powder can make it easier to put on and prevent skin irritation. Caring for the silicone coating on the adhesive bands is essential to avoid skin irritation. In winter, thermal insoles and knitted socks provide extra warmth, while fingerless gloves help maintain flexibility. For more tips and advice, I refer you to my book, which contains a wealth of information for self-management.
Making Compression Fashionable
Making compression garments fashionable is an art. It’s about finding clothes and accessories that not only fit your body shape but also highlight your personal style. Colored compression doesn’t have to be a hindrance – it can serve as an accent for an outfit. With the right nail polish or matching accessories, any look can be rounded off and personalized.
In my role as a health influencer and compression model, I want to inspire and encourage. I want to show that even with lipedema, you can be fashionable, confident, and active. It is a journey filled with challenges but also countless opportunities to rediscover and redefine yourself.
Reflection and Outlook
Each of these therapies, each dietary change, and each surgical intervention has taught me that the path to self-healing takes many forms and that the path to improvement is often a mosaic of different approaches. My struggle with lipedema is a journey of self-discovery, learning, and growth. It is a journey that has taught me to celebrate small victories, appreciate the power of community, and never lose hope.
To all the wonderful women out there living with lipedema and its pain: you are not alone. Together, we can walk through the darkness, support, and encourage each other. Let us laugh, cry, and grow together. Because together, we are strong.
Caroline Sprott is not only a well-known person living with lipedema but also a speaker, compression model, moderator, and an inspiring health influencer who has motivated thousands of flat-knit heroines on social media for many years. Instead of letting her lipedema diagnosis discourage her, she uses her years of experience to encourage others on various platforms and raise awareness of these often misunderstood conditions. Known for her warm and honest dedication to people with lipedema and lymphedema, she has become an important voice in the community. The "Power Sprotte," as she calls herself, runs the most comprehensive patient-led website for people wearing compression and an online shop for everything needed for good self-management.
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