Here’s a testimonial from Chloé, one of our patients, who was kind enough to look back on her operation and tell us about her experience with lipedema.
How did you find out about pole leg disease?
One of my Instagram followers told me to go and watch the famous interview with YouTube artist Emmy, who has lipedema herself. Since 2015, after my first pregnancy, I had opened an Instagram account to share my physical progress and motivate myself.
I’d started working out, but my lower body hadn’t changed a bit. Despite my determination, motivation and regularity, every effort I made had no effect on my legs.
I watched this video, and then it hit me! I thought I heard myself speaking…
I then researched the condition. It confirmed that I had lipedema.
Were you suffering physically and psychologically from the disease? How did it make you feel?
I began 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 my legs were “deformed”, “enormous”, whereas my upper body was very slim. I remember the summer vacations, when it was very hot and I stayed in jeans…
I never wore shorts, skirts or short dresses. I was so ashamed of my legs that I would do anything to hide them. As I got older, it didn’t get any better.
Every year, as summer approached, I would set myself the goal of losing 10 kilos in an attempt to slim down those pesky legs! I spent a lot of money on miracle creams and pills, on massages in institutes… But of course, nothing changed. Except that I developed BEDs (eating disorders) and lost a lot of money. I had to try every diet I could think of, even down to just one coffee and one apple a day!
The way other people looked at me was unbearable… For me, they only looked at my legs, and judged me as fat who wasn’t making any effort to lose weight. I had no self-confidence.
Shopping after having managed to lose those famous 10 kilos, now weighing just 45 kg, trying on the pretty little short dress and still finding myself fat was a real pain and became incomprehensible! I’ll spare you the details of finding boots that could be closed, or ski boots…
What a shame in front of the salespeople, who didn’t know what to do for me either…
From the age of 25 onwards, the pain became more and more frequent. My second pregnancy in 2017 made my lipedema worse. The fat in my knees increased again, and the pain became a daily occurrence (throbbing, heaviness, warmth, edema…).
Some nights, I even had great difficulty sleeping because my legs were so hot.
How did you get to know Dr. Nicolas Zwillinger?
I came to know Dr Nicolas Zwillinger through social networks. I was following someone who was also complaining about her post legs. One day, she announced that she was going to have surgery with Dr Nicolas Zwillinger. At the same time, I learned that I too suffered from this disease. And I got it into my head that I too would go through with the operation. So I made an appointment with him.
Can you tell us about the treatment process (stages, duration, operations, etc.)?
Everything came together very quickly once I learned about this disease in May 2019. I didn’t want to waste any more time. I’d already lost enough… I was diagnosed by an angiologist, then quickly met withDr Nicolas Zwillinger in June 2019. After our interview, I took some time to think things over and we agreed on an operation date 4 months later.
Before the operation, I started manual lymph drainage with a physiotherapist. I started again about ten days after the operation. I did it 2 or 3 times a week for 3 months to help reduce the oedema.
On my own initiative, I also saw a psychologist before the operation. I wanted to arrive on “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 surgery around 3:30 pm and was back in my room by 6:30 pm. I don’t know exactly how long my operation lasted. 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 results?
The first visible results came 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 oedema and haematomas 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?
Today I’m 6 months post-op, and I’ve lost around 5 to 6 cm in 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 isn’t 100% perfect. I’m satisfied and have no regrets!
I’m alive again! I finally have “normal” legs that I can show off without feeling ashamed! I can finally dress the way I want and think I’m pretty! I almost only wear dresses or short skirts, so I’m much more confident.
It’s a real change, both physically and psychologically.
We know that many people suffering from lipoderma undergo surgery in Germany or Spain.
What were your reasons for undergoing surgery atDr Nicolas Zwillinger?
The main reason was that, with 2 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 complications at the time of the operation or afterwards, it would have been too difficult to manage.
My appointment withDr Nicolas Zwillinger went very well. I felt confident. I didn’t feel the need to get another opinion.
8. Does this illness prevent you from playing sports today?
Today, 6 months post-op, I can “almost” do everything as before.
Only my knees give me a few problems. I can hardly stay on my knees on hard floors. And I can’t bend them completely. My legs are still swollen and sensitive to touch after heavy exertion. I have to keep up the massages, wear restraints regularly and elevate my legs… Sensitivity is slowly returning.
It’s getting better all the time, and eventually everything will be back to normal. So the operation hasn’t stopped me from doing sport (running, fitness, weight training…) But once again, you have to be patient…
If you had to give a few words of advice to people suffering from lipoderma in France, what would you say?
The first thing is to get them officially diagnosed.
It’s a bit of a relief to understand what you’ve got, even if it’s a shock at the same time.
Secondly, they should find out about all the protocols that can help them live “better” with lipedema (restraints, adapted sports and diets, massages…).
And if, like me, they can’t stand living with “those damn legs” any longer, they should meet with a surgeon to consider an operation. In the latter case, I’ve always told them one thing: “you need to feel confident with the surgeon you’re entrusting your legs to”.
Personally, I felt at ease withDr Nicolas Zwillinger from the very beginning until I was put to sleep on the operating table.
I have no regrets and would do it again without hesitation.
Is there anything else you’d like to tell us?
For all those girls with lipedema, I’d tell them to be brave and forgive themselves. The operation is certainly “miraculous” enough, but it’s no magic wand either.
Bear in mind that the post-operative period can be long, difficult and painful. It’s still surgery, the legs are being reshaped, and there may be some asymmetries and irregularities. Every body heals in its own way, more or less well. I think it’s very important to keep this in mind. Just so you’re not disappointed. Again, it’s not magic.
Psychologically, even if we’ve got rid of our “unsightly” legs, our self-image has been such a source of suffering that it doesn’t just go away.
Personally, I’m afraid it’ll come back, and I frequently “run” to look at my legs in the mirror to check they haven’t become “fat” like before. And if that’s not enough, I take my tape measure to see for myself. I hope the road to recognizing the disease won’t be too long.
We all hope that the medical profession will be more and more informed about this disease, to avoid being misunderstood, pigeonholed 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, recognized and helped.
Thank you, a final word to conclude this article “Testimony of Chloé”?
I’m 40 tomorrow… And I’d love to be back in 1994, saying to that 14-year-old girl: “It’s not your fault, we can help you”.
0 Comments