Lipoedema
"The Disease They Call FAT"
Welcome to the Lipoedema information page.
My name is Gayle Clearwater, I was diagnosed with lipoedema in 2020. It has been a rollercoaster of discoveries, emotions, and plenty of fat shaming! I created this page so women like me can have an information hub to educate, empower, and inform themselves on where to seek support, help, diagnoses, and what helps to improve their quality of life.
**Disclaimer** The information and resources provided on this page are based on my personal research, experiences, and recommendations from various websites and sources. I am not a medical professional, and the content shared here should not be considered medical advice or a substitute for professional diagnosis, treatment, or guidance. While I strive to present accurate and unbiased information, some of the places or resources I recommend may reflect my own personal experiences and opinions. It is essential to consult with a qualified medical professional or healthcare provider for advice tailored to your specific condition and needs, particularly regarding lipoedema or any related medical concerns. By using this page, you acknowledge and agree to the following: - The information provided is for informational and educational purposes only and is not intended to diagnose, treat, cure, or prevent any disease. - Any reliance you place on the information provided is strictly at your own risk. I am not liable for any errors, omissions, or outcomes resulting from the use of this information. - Links to third-party websites are provided for convenience only, and I do not endorse or take responsibility for the content, accuracy, or practices of these external sites. Always verify information independently and consult professionals as needed. - Personal experiences and opinions shared on this site are subjective and may not apply universally. Results may vary depending on individual circumstances. I strongly encourage you to seek advice from licensed professionals for medical, legal, financial, or other specialized concerns. Your health and well-being are your responsibility, and any decisions made based on information from this page are at your sole discretion. This disclaimer is subject to change without notice and should be reviewed periodically for updates.
Where to Seek Knowledge & Support
The information and links I am providing are what I have found useful to learn more about this disease and how to manage it. (Currently) It can be managed, but it can't be cured!
Could You Have Lipoedema?
Check these common signs to see if you might have lipoedema:
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Your hips, thighs, legs, or arms feel heavier or look out of proportion (but your hands and feet seem fine).
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Your legs or arms are often tender, sore, or sensitive to touch.
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You bruise easily, even without a noticeable bump or injury.
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Swelling in the legs or arms that doesn’t go away.
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Weight loss doesn’t affect specific areas.
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Family history of similar symptoms.
If this sounds familiar, explore more resources
My Story
My Lipoedema Journey
Early Signs and Self-Discovery
Looking back, I can see the early signs of lipoedema in my school photos. My ankles were slim then, but things began to change in high school. The first significant shift happened when I gained 20 kilos after starting a contraceptive pill. My body reacted so strongly that I had to stop taking it. Later, after the birth of my first child, I noticed my legs becoming straighter and heavier, which made me self-conscious. After my second child, things worsened, and I started avoiding showing my ankles entirely. Friends reassured me, but I knew something wasn’t right. I used to joke about "walking past something sweet and gaining weight instantly," but now I realize it was a sign of lipoedema.
Medical Challenges and Fat Shaming
I faced years of medical fat-shaming, starting with an anaesthetist who dismissed my efforts to eat healthily and exercise. When I told him I didn’t "sit around eating pies all day," he simply said, “Well, at least you carry it in your legs.” I left the appointment in tears.
Despite being strict with diets like Optifast and losing 38 kilos, the lipoedema fat deposits remained. My GP admitted they didn’t know much about it and why these balls of fat were there and suggested removal might be the only solution. Stress, court battles, and major life changes exacerbated the condition, and I found myself in a cycle of trying to manage my weight while dealing with growing health challenges.
Diagnosis and Learning to Manage Lipoedema
The turning point came when a friend gifted me a lymphatic massage voucher. The therapist asked if I’d heard of lipoedema, and her comment led me to research the condition online. When I saw images of others with lipoedema, I knew instantly that was what I had.
My doctor was unfamiliar with the condition, but I worked with a registrar who confirmed how little training most medical professionals receive about it. Eventually, I joined the Lipoedema New Zealand support group and sought a formal diagnosis from a specialist, who estimated I had around 10 kilos of lipoedema fat in my legs.
Treatment and Progress
I learned about treatments like manual lymphatic drainage (MLD) massage and compression garments. While custom compression didn’t work well for me, I found success with other products like CzSalas -grade 2 compression garments. Despite challenges with varicose veins and swelling, these treatments made a noticeable difference. I also made significant dietary changes, eliminating inflammatory triggers like alcohol, white rice, potatoes, and sugar. These adjustments reduced pain and swelling and improved my quality of life.
Surgery and Looking Forward
After years of research, I’ve decided to undergo surgery to remove lipoedema fat. My first surgery is scheduled for February 2025, with more to follow later in the year. While the condition has progressed to my arms and stomach, my focus is on restoring mobility in my legs, which affects my ability to live actively and care for my family.
Advocacy and Hope for the Future
Throughout this journey, I’ve faced countless hurdles, from medical ignorance to public judgment. I’m now advocating for lipoedema awareness, determined to educate others so they don’t face the same struggles. It’s heartbreaking to think this condition could be passed on to my children or grandchildren, but I’m hopeful that sharing my story will inspire better understanding and support for those affected.