Nella (55) From Uncertainty to Acceptance: My Journey with Lipedema.

Photographer: Chessarina Spaninks - The Lipedema Project

Nella (55) shares her story about her condition Lipedema, which she has been living with for 30 years. Her official diagnosis didn't come until she was 48, but it triggered a wave of emotions. She felt sadness, because of the long search for answers, but also relief because she finally knew what was going on. Understanding Lipedema has helped her to stop blaming herself for her weight. She has become stronger in her self-acceptance and has learned to appreciate her body as it is.

This is Nella's story.

Discovery of Nella’s Lipedema

I live in the beautiful town of Wormer, a Dutch province in North of Holland. I am also a mother to a beautiful 23-year-old daughter. Since December 2022, I have enjoyed working in childcare, specifically at the out-of-school care. At 55 years old, I still feel young and am often estimated to be younger, which is always nice to hear.

My first symptoms of Lipedema manifested themselves during my adolescence. My legs grew faster than the rest of my body and I quickly got big bruises after bumping my legs. Although I have strong legs, I generally experienced little pain. Occasionally, my legs felt sensitive after exercise, in hot weather or after eating a lot of sugar. I was grateful that I have had almost no pain.

I discovered that I had Lipedema in an unexpected way. During a visit to the orthopaedic shoe store for a routine check-up of my blood vessels, the specialist noticed that my physique matched that of someone with Lipedema. This news came as a shock, as I had never heard of this condition before. After the specialist explained to me what Lipedema entailed, I went home to do research online and I felt the emotions bubbling up and the tears started flowing.

My diagnosis of Lipedema was not without its challenges. After I first heard about Lipedema, I started doing thorough research into the condition, its possible causes, and treatments. This led me to a hospital, where I was faced with a waiting list of almost six months for a first appointment. Not wanting to wait, I visited a phlebology centre nearby, where she told me that I most likely had Lipedema. Despite the certainty of the diagnosis, I had to wait officially for confirmation from a doctor. This was a period of uncertainty and frustration, but it did give me the opportunity to learn more about Lipedema and prepare for what was to come.

After a 6-month wait, I was finally able to go to my first appointment at the hospital. After a series of measurements and activities, I was diagnosed: grade 2 Lipedema. However, this news brought little relief, as the treatment process turned out to be disappointing. The doctor advised me not to gain weight, to move more and to wear compression stockings. After that, I was on my own. I started researching how I could control my weight better. Despite an earlier weight loss from 160 kilos to 80 kilos after gastric band surgery in 2005, there remained a clear difference between my upper and lower body.

After removing my gastric band, the pounds came back gradually, without me knowing that I had Lipedema. If I had known then what I know now, I would have been able to control my weight better and move more. Despite my ignorance, I eventually accepted my body as it was and lived my life to the fullest, with going out, boyfriends and sports, albeit with ups and downs.

Photographer: Chessarina Spaninks - The Lipedema Project

Treatments and life with Lipedema

In my search for treatments, I considered several options, including connective tissue massage and cupping. While these techniques offered some relief, they were not the solution I was hoping for. I also experimented with different diets and exercise regimens, finding that low carb eating and regular exercise were most effective for my Lipedema.

Compression garments have become an integral part of my daily life. I discovered it through The Lipedema Project and started wearing it while exercising and walking. It helps in reducing swelling and improving my recovery after exercise.

Photographer: Chessarina Spaninks - The Lipedema Project

At the age of 23, I underwent liposuction on my thighs, buttocks and hips, without knowing anything about Lipedema at the time. The doctors never said anything about it. At some point I realized that my clothing sizes varied a lot, from above size 38 to below sometimes 48 or even 50. Now I understand why. With a referral from my GP, I ended up at a plastic surgeon’s office and underwent three liposuctions, reimbursed by insurance at the time - unfortunately that is different now. I was relieved that my lower body was slimmer after the surgery, but it didn't stay that way. Fortunately, it hasn't gotten as bad as before. Only during my pregnancy did my legs really get thicker again, but thanks to losing weight with the help of my gastric band, I recovered, and the extra weight disappeared again.

Challenges and Lipedema advice

My biggest challenge was accepting my body and dealing with the physical and emotional impact of Lipedema. My advice to others who have just been diagnosed is to be well informed about the condition, seek support from peers and experiment with different treatments and lifestyle changes. It's important to understand that what works for one person won't necessarily work for another.

For ladies who have just been diagnosed: inform yourself well about Lipedema and seek support from fellow sufferers. Find out what works for you to control Lipedema. Exercise is important, but it doesn't always have to be intense. Try to find what works for you and what lifestyle changes are best for you. Accept your Lipedema and try different treatments, such as compression garments.

Learn how LIPOELASTIC compression can help with Lipedema

Moving forward with Lipedema diagnosis

My official diagnosis didn't come until I was 48, but it triggered a wave of emotions. I felt sadness because of the long search for answers, but also relief because I finally knew what was going on. Understanding Lipedema has helped me to stop blaming myself for my weight problems. I have become stronger in my self-acceptance and have learned to appreciate my body as it is.

For the future, I hope for more awareness and understanding of Lipedema, as well as improved access to treatments such as liposuction. I believe that compression garments will continue to play an important role in the day-to-day management of Lipedema, and I hope that there will be more options that focus on daily use. In addition, I want to continue to contribute to increasing awareness about Lipedema, by sharing my experiences and helping others to accept themselves and find the best care for themselves. With a larger community of understanding and support, together we can strive to provide a better quality of life for everyone living with Lipedema.

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