A testimony of Chloe, one of our patients, who was kind enough to talk to us about her experience with lipedema.
How did you find out about pole leg “disease”?
One of my followers on Instagram told me to go and watch the famous interview with YouTuber Emmy, who has lipedema herself. Since 2015, after my first pregnancy, I had started an Instagram account to share my physical progress and motivate myself.
I had started working out and no change was taking place on my lower body. Despite being relentless, motivated and consistent, all the efforts I was making were not having any effect on my legs.
I watched this video, and it was a shock! I thought I heard myself talking…
I then did some research on this disease. And it confirmed that I had lipedema..
Did you suffer physically and psychologically from this disease? How did you feel?
I started to suffer psychologically from this disease. I was 14, the age of puberty. The time of the first boyfriends… It was very difficult for me.
I thought I was fat because of these “deformed”, “enormous” legs, whereas my upper body was very thin. I remember the summer holidays, it was very hot and I was wearing jeans…
I never wore shorts, skirts or short dresses. I did everything to hide my legs because I was so ashamed of them. As I got older, it didn’t get any better.
Every year as summer approached, I would set out to lose 10 kilos in an attempt to lose weight off those damn legs! I spent a lot of money on miracle creams and pills, on massages in institutes… But of course, nothing changed. But of course nothing has changed, except that I have developed BEDs (eating disorders) and lost a lot of money. I had to try every possible diet, even to the point of eating only one coffee and one apple a day!
The way other people looked at me was unbearable… They only looked at my legs, and judged me as fat and not making any effort to lose weight. I had no confidence in myself.
Going shopping after I had managed to lose those famous 10 kilos, weighing only 45 kilos, trying on the pretty little short dress and still finding myself fat was a real pain and became incomprehensible! I don’t need to tell you how to find boots that can be closed, or ski boots…
What a shame in front of the salesmen who didn’t know what to do for me either…
From the age of 25 onwards, the pains became more and more frequent. My second pregnancy in 2017 made my lipoedema worse. The fat in my knees increased again and the pain became a daily occurrence (throbbing, heaviness, warmth, oedema…).
Some nights, I even had great difficulty in sleeping because my legs were so hot.
How did you hear about Dr. Nicolas Zwillinger?
I got to know Dr Nicolas Zwillinger through social networks. I was following a person who was also complaining about her post legs. I was interested in this and one day she announced that she was going to be operated on by Dr Nicolas Zwillinger. At the same time, I learned that I too was suffering from this disease. And I thought to myself that I too would go through with the operation. So I made an appointment with him.
CAN YOU TELL US ABOUT THE TREATMENT PROCESS? (STEPS, LONGER, OPERATIONS, …)
Can you tell us about the treatment process? (steps, longer, operations…)
It all happened very quickly once I found out about this disease in May 2019. I didn’t want to waste any more time. I had already wasted enough… I was diagnosed by an angiologist, I then met quickly with Dr Nicolas Zwillinger in June 2019. After our interview, I took time to think about it and we agreed on an operation date 4 months later.
Before the operation, I started manual lymphatic drainage with a physiotherapist. I started again about 10 days after the operation. I did this 2 to 3 times a week for 3 months to reduce the swelling.
I also saw a psychologist on my own initiative before the operation. I wanted to arrive on the “D” day ready and strong to face this stage. I wanted to get rid of any negativity or weight that would get in the way afterwards.
How long did the operation last?
I left for the operating room at about 3.30 pm and was back in my room by 6.30 pm. I don’t know exactly how long my operation took. I was very confident and calm. I was determined and sure of my choice.
Did you have any concerns?
I was just worried because I was aware of the risks I was taking by undergoing surgery.
Post-op : how long did it take to see the results?
The first visible results were the morning after my operation when I changed my bandages. It was just incredible to discover my legs free of all that fat! But the most incredible thing for me was to see “real legs”, a “real leg shape”.
Then, of course, the swelling and bruising made things more difficult, as my legs were bigger than before the operation. You have to be “patient”.
I started to see a real difference after 4 weeks.
Are you satisfied with it?
Today I am 6 months post-op and I have lost about 5 to 6 cm on the “strongest” areas. The areas that have been operated on are: ankles, calves and knees.
The change is just “crazy”! Obviously, I’m delighted. Even if the result is not 100% perfect. I am satisfied and I don’t regret anything!
I am reborn! I finally have “normal” legs that I can show off without being ashamed! I can finally dress the way I want and think I’m pretty! I almost only wear dresses or short skirts, I am much more confident.
It’s a real physical change but also a psychological one.
It is known that many people with lipoderma undergo surgery in Germany or Spain.
What were the reasons for you to be operated on by Dr Nicolas Zwillinger?
The main reason was that with two small children, I couldn’t imagine going abroad.
I didn’t want to be away from them for too long, but above all, if there had been any complications at the time of the operation or afterwards, it would have been too difficult to manage.
My appointment with Dr Nicolas Zwillinger went very well. I felt confident. I didn’t feel the need to get another opinion.
Does this disease prevent you from doing sport today?
Today, 6 months after the operation, I can “almost” do everything as before.
Only the knees cause me some problems. I can hardly stay on my knees on hard floors. And I can’t bend them completely. My legs still swell and are still sensitive to touch after heavy exertion. I have to continue massaging, wear restraints regularly, raise my legs… Sensitivity is slowly returning.
It’s getting better and better, and eventually it will all come back. So the operation doesn’t stop me from doing sport (running, fitness, weight training…) But once again, I have to be patient…
If you had to give some advice to people suffering from lipedema in France, what would you say?
The first thing is that they should be officially diagnosed.
It’s a bit of a relief to understand what you have, even if it’s a shock at the same time.
The second thing is that they should find out about all the protocols that can help them live “better” with lipedema (restraints, adapted sports and food, massages, etc.).
And if, like me, they can’t stand living with “those damn legs” anymore, to meet a surgeon to consider surgery. In the latter case, I always told them one thing: “you have to feel confident with the surgeon to whom you will entrust your legs”.
Personally, I felt confident with Dr Nicolas Zwillinger from the beginning until I was put to sleep on the operating table.
I have no regrets and would do it again without hesitation.
Do you have anything else to tell us?
For all those girls with lipedema, I would tell them to be brave and forgive themselves. The operation is certainly quite “miraculous” but it is not a magic wand either.
You have to remember that the post-operative period can be long, difficult and painful. It is still a surgery, the legs are reshaped, there may be some asymmetries, some irregularities. Each body heals in its own way, more or less well. I think it’s very important to keep this in mind. Just so you don’t get disappointed. Again, it’s not magic.
Psychologically, even if we are rid of our “unsightly” legs, our self-image was so painful that it does not go away by magic.
Personally, I am afraid that it will come back, and I frequently “run” to look at my legs in a mirror to check that they have not become “fat” again as before. And if that’s not enough, I take my tape measure to see for myself. I hope that the road to recognising the disease will not be too long.
We all hope that the medical profession will be more and more informed about this disease to avoid being misunderstood, labelled as chubby girls who don’t take responsibility for themselves and don’t make enough physical effort when consulting a health professional.
We just want to be listened to, recognised and helped.
Thank you, a final word to conclude this article “Testimony of Chloe”?
I’m 40 tomorrow… And I’d so much like to be in 1994, and say to that 14-year-old girl: “You’re not to blame, we can help you”.