My personal lipedema story
Diagnosis and therapy
After 2 decades of suffering, I got diagnosed with lipedema in summer of 2015. Lipedema is a chronically progressive disease which is basically a very painful fat disorder, that almost exclusively affects women. It causes a symmetrical accumulation of fat in the subcutaneous tissue that disproportionately affects the lower limbs from buttocks to ankles. For 30% of the affected women, the upper arms can also accumulate distinct patterns of fatty tissue, which was the case for me.
Because I didn’t know I was suffering from a chronical disease, I developed different eating disorders in my vulnerable teenage years: I wasn’t aware it was not my fault my body was changing in a weird way at that time and lipedema can react heavily on any hormonal change or disbalance. And I didn’t know that there was nothing I could do myself to stop it.
Instead, I tried hard to fight myself and my body, which I hated more and more each day.
Besides the growing pain in my legs and arms, this inner fight was way more hurtful and destructive. I saw many doctors and therapists in Luxembourg, where I was born and living at that time. Nobody was able to diagnose me correctly.
In 2014, my husband and I moved to Germany. We were on a four-year sabbatical to find new enjoyable professional challenges. I was indeed very lucky having moved to Germany, where the specialists in lipedema diagnosis and treatment are located; otherwise, I would probably not have been diagnosed and treated correctly up until now.
I decided to completely change my life and focus on my mental and physical health. My lipedema therapy – a combination of compression garment, manual lymphatic drainage and diet – was very successful and my physical and mental health got better and better. I started losing weight due to healthy and fresh nutrition, and my fitness level increased because I was able to do sports again. In 18 months I managed to lose almost seventy pounds. I was actively taking control of my life again.
After one year of conservative therapy and weight loss, I had two lipedema surgeries which consisted in a specialized liposuction. The healing process is very long (one year) and painful and it is connected to mental ups and downs again. But I can say now, that it was all worth it: I lost another 10 pounds, and most important, my actual quality of life is far better than it was in the last twenty years! I have less pain, I have gained lots of self-confidence and I am exploring new interests and abilities I didn’t even know I had.
May 2015 / March 2017
Using my powers for good
The surgeries are unfortunately not paid by the health insurance in Luxembourg. I decided to start to fight for my personal rights – and for a change in general. I had to learn the hard way that lipedema is largely unknown in Luxembourg and often misdiagnosed as simple obesity. There is almost no help for affected women in my country of birth.
I created a Facebook group together with a friend in 2016 to connect lipedema patients in Luxembourg and to get in touch with them. Inspired by its fast growth and the valuable exchange of information, we founded a non-profit organization in Luxembourg in January 2017, called Lipödem Lëtzebuerg a.s.b.l.
Executive Board Lipödem Lëtzebuerg a.s.b.l.
The feedback was enormous and I knew it would be very useful to create a website to reach more affected women, doctors, and other interested people.
I accepted the challenge and decided to set up a WordPress website. With almost no skills and within a period of seven days only I managed to create lots of valuable content with a nice structure. I realized what makes WordPress so special: everybody who has something important to share is given the possibility to raise his voice by WordPress.
We have been very active in educational work and we built a significant presence in Luxembourgish media in the past months.
We started a lipedema photo campaign to create sustained awareness in Luxembourg. I was one of six models and realized the layout and design of the individual slides.
Lipedema photo campaign 2017 – Carole
Lipedema photo campaign 2017 – Title
We connect people through self-help groups with combined exercise programs.
We have reached many lipedema patients through our website and Facebook, who thank us every day for our commitment as so-called lipedema fighters.
Meanwhile, in collaboration with the National Patients Representation, we have not only formulated concrete demands concerning diagnosis and therapy to the Luxembourgish Government, we also have organized the first lipedema conference in Luxembourg, which was a huge success.
Lipedema conference July 1st, 2017
I am so happy that lipedema is now a topic of discussion in Luxembourg, which is not only a consequence of our devotion but also due to WordPress allowing me to build a website in a very short amount of time, and with almost no skills.
It is overwhelming to see how much attention and gratefulness our work has earned. It fulfills me in a new way that I had never experienced before in any job I had.
In the meantime, I was also fighting for my personal rights: I sued my supplementary health insurance at court in Luxembourg and I won this legal dispute in the first instance! My case would be a precedent in Luxembourg and would mean a change for many other affected women. Unfortunately, my insurer appealed the judgment and the final decision will take another estimated ten months. But I won’t give up now. I will continue to fight for myself and for other affected women for as long as it takes.
In September 2017, I will have my last surgery. I admit, that I am not really looking forward to it, as I know the struggle and pain waiting for me. But I have hope that after this last step, I will have some great years in a good physical and mental condition. I am aware that this chronical disease cannot be healed. But I know now, how to deal with it.
Tough times never last, but tough people do.
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Thanks. Useful information!
Hi Carole,
That is an amazing story, well done on your fight and you have won in more ways than one.
I’m very happy for you.
I had vein surgery some years ago and from that developed a swelling above my ankle. No one could diagnose it they said lymphedema.
Anyway this year something Stange happened to my body, I was very sick and out the blue got abnormal swelling in my legs and arm.
The vein specialist said it is lipodema.
May I ask if you would be happy to let me know what diet and exercise you did?
I have googled diets and tried googling exercises. But was wondering what diet and exercises you did besides the surgery to help you.
Thanking you in advance.
Kind Regards
Hello Carole,
This is an amazing website! I have lipedema, too, and just discovered it in November 2017 by accident on the internet. Since then, I have had two painful lipedema liposuction surgeries in the United States. It was very expensive as it was all paid for privately, plus I live in Canada so I had to travel there and back for both surgeries. I am in the recovery process right now and doing very well. The bruising and soreness is all gone and I am feeling great, but still am dealing with swelling. My two surgeries were in April and May of 2018.
Carole, you look amazing!! You don’t even look like the same person; the difference is astounding from your “before” picture to your “after” picture. I am very hopeful that I will have amazing results, like you. I wanted to find out about your recovery, if you would be so kind as to answer my questions.
What kind of diet did you follow to lose weight? I am trying to lose weight right now (I have about 75 lbs to lose) and it’s very hard. I am working out very hard with weights and am walking a lot every day. I am keeping my calories to about 1200-1400 a day and am limiting carbohydrates. I have lost about 2 lbs but it is slow. I am just so happy to see the scale moving downwards, though, for the first time in many years. I was just wondering if there was something interesting or particular that you did that really worked to help you lose weight? I am watching my fat and carbohydrate intake and am eating a lot of vegetables with high fibre.
How long did it take for the swelling to go down in your legs? I have terrible swollen and lumpy areas post-surgery that are very distressing, especially in the outer-thigh (saddlebag) area where my surgeon did liposuction two times because I had such huge lumps on the outside of my leg at the upper thigh, just below my hips. Now those areas are lumpy and very squishy. I know it is still containing a lot of swelling, but I am wondering when on earth that will go away?? My surgeon told me to massage the area twice a day and I am also doing acupuncture and regular massage and manual lymphatic drainage, too. Besides wearing compression and jumping on a trampoline, and drinking herbal teas to encourage drainage of water-retention, is there anything else I can do? Or do I just have to be patient and it will go away in time?
Thank you for your time, and for your wonderful blog. I wish you much success in spreading the word about this disease and helping others!
Kind Regards,
Nicole from Canada
Hi there,
Can you tell me if the liposuction benefits are permanent? I saw on the Stanford website, that typically we need re-treatment every 5 years? How much does each procedure cost?! Thanks!!
Hi Nicole I know this was several years ago but I am wondering how your healing went after your surgery ?
I have been diagnosed with lipedema a couple of months ago and as you can imagine I’m reading up on everything.
I have read up about liposuction and am on a Facebook and Instagram site so i get to see before and after photos which are amazing.
The worry I have is I also have fibromyalgia osteoarthritis hypermobility as well as lipedema. I would like surgery but it scares me of how much it may hurt afterwards as already suffer with pain.
I also have a big varicose vein in the back of my left leg.
I hope you get to see this and hope you are doing well.
Thank you also to the wonderful lady who did the blog.
I hope you too are doing well.
Hi there,
Can you tell me if the liposuction benefits are permanent? I saw on the Stanford website, that typically we need re-treatment every 5 years? How much does each procedure cost?! Thanks!!
I am desperate to know how you lost weight, would you please share what you did? I have lipedema and my quality of life is zero. I can’t move more than a few steps with a walker. What doctors I have contacted won’t operate because I am too old or too far along. If I could find a way to lose some weight, it would increase my chances of finding a surgeon. Please Help.
I too have lipodema and have trunks for legs. Its also in my arms. I had lost 20kgs but it made no difference to my legs and arms. I used to walk 7klms per day too. Didnt help.
I dont want to go surgery so am interested in diet and what exercise you used. Im in australia. Thanks
hi
i have lipedema
how can i contact you ?’
where did you have the lipo?
How did you lose the seventy pounds before you had surgery?
Hi, thank you for sharing your story. It gave me immense help as I have been diagnosed with lipedema recently. I have moved from Sweden to Germany and I am glad that I did. I have been struggling with lower body weight issues from last 10 years. I have tried everything from rigorous diets to exercise under the roof with no success. Can you pls suggest me from where you got your liposuction done and which diet and exercises helped you to loose weight?