Testimony of Élodie: second lipoedema operation by Dr Nicolas Zwillinger
We are with Mrs. Élodie G. Who had her second thigh operation today by Dr. Zwillinger: can you introduce yourself and tell us about your history with lipedema?
My name is Mrs. Elodie G., I am a nurse, I am 25 years old. My lipedema was diagnosed in February 2020. It took a long time to be diagnosed… We thought it was overweight.
My GP ruled out every possibility. Endocrinologist, depression… She ruled out a lot of possibilities. I discovered the disease on a report on TF1 : it was Emmy talking about her disease and everyone said to me “Look at the report! Those are your legs on TV!” and when I went to the doctor one day, I told him “I saw a report, it looks very similar to what I have. I feel like I’ve seen my own legs on the internet.”
I went to see a specialist in Tours, as I was living in Tours at the time, and at first he barely saw me and said, “I don’t even need to do the tests, but we’ll do them anyway, I can diagnose you right away.
I broke down in the surgery because I was both happy to finally find words but at the same time I thought that the ordeal was just beginning. I was just thinking about my legs when I got into my underwear, but the specialist said, “We’ll look at my arms too,” and I said, “What do you mean my arms? I’ve just put on a bit of weight!” and he says “No, it’s not weight, it’s lipedema! It’s rare in the arms but it happens.”
I waited for a while, I waited because I was told I had to have an operation, I waited… And I had a peak: it accelerated. The trigger was when I had to put on rubber boots because we were doing some work at home and I couldn’t put them on. That’s when… I said there, that was radical, I’ll make an appointment straight away!
So after you had an appointment, the doctor confirmed the diagnosis
Yes, he confirmed the diagnosis and scheduled three operations. The first: ankles, calves, knees. The second: knees, thighs and the last: arms.
I’ve already had my calves done, it’s not the easiest, at least I think so because I don’t have the hindsight for the others, so afterwards… We don’t move very well. It’s like “Quasimodo” moving around or “Culbuto” moving around! For me, it wasn’t necessarily the pain that was a problem, it was the swollen legs, the sensation of the legs swelling. Sometimes I had the sensation of having discharges in the tendons but, otherwise, with good ice packs and doliprane, I was relieved.
But frankly it was especially the first 15 days: at night it wasn’t very painful but you get up 3-4 times to go to the toilet and then you have to rest. I’m starting to get the hang of it!
Did walking after the operation help you?
Yes. I didn’t walk the very first week, I started walking the second week and I saw the difference.
In fact I walked a bit the first week but on the very first day I went out, the Tuesday after the first operation, I forced myself to walk to the GP’s, I said to my mum “It’s OK, we’ll walk, no problem” and… I was called to order! I was not well at all, I tried all the painkillers and none of them worked except for the doliprane.
In the beginning, you shouldn’t force yourself too much, you should listen to yourself. At the beginning, you have to do the bare minimum. The first day I was fine but in the evening my legs must have said “Oulala! You have to go slowly but surely.
[img] Elodie’s legs a fortnight after the operation
And in terms of results, when did it start to take shape in the ankles?
Quite quickly because in the operating room I had already done an analysis, the doctor showed me the before and after pictures and “Whaou” !
And the next day when we had to put on the bandages and the stockings for the first time… Frankly, you could already see the difference. Now I’m two and a half months along: I find that they are a little more swollen than at the beginning, than when I left the operating theatre, but they don’t hurt. There are just insensitive areas. It’s very peculiar but it’s not painful.
For me, as long as it’s not painful, even if it’s a bit swollen, it doesn’t bother me so much. It’s an oedema.
Exactly: the oedemas and the sensations are things that evolve gradually.
Yes, it is. There are areas that come back, then become insensitive again… They swell up again… But afterwards, as long as I don’t have any pain, I think that’s the main thing.
If there had been pain it would have been more complicated for me.
After the first operation there were no doubts for you about continuing with the second operation?
I had my doubts because I received pre-operative prescriptions for the second operation on the Wednesday after the first operation, but the more the days go by the more you think that 15 days is nothing after all.
That’s also why I programmed all the interventions, I said to myself if I don’t program them I know myself I’ll bail out.
I don’t regret having scheduled the interventions. I know that the next one is in September, I have no choice and that’s how it will be. At least it will be over. And after my lipedema we won’t talk about it anymore!
What advice would you give to people with lipedema or who are unsure whether they have lipedema or not?
Essayez d’en parler. Moi j’étais auTry to talk about it. At first I was more or less thin in the stomach area and my legs were really swollen in comparison. You should talk to your doctor and ask if he or she knows about lipedema. If your doctor doesn’t know, I advise you to look it up on the internet and compare. These are still atypical pains and they are well described on the internet.
I found myself in the articles, in the reports and in the testimonies. What they say is exactly that, I found myself in people’s opinions.
If I have any advice, it’s not to wait too long because I think I waited a little too long and I end up with astronomical quantities to remove. I waited to have the operation so that I wouldn’t have to have it for nothing and I regret having waited too long because the body suffers. Much more is removed.
That’s the only thing I regret: waiting.
Yes, the lipedema has had time to progress in the areas already affected.
Yes, that’s it. I originally said I wanted to have pregnancies before and then have surgery afterwards and I soon regretted it because I thought that if I got pregnant I wouldn’t be able to move around myself because in the end it became disabling.
At work I couldn’t move around as I wanted, my legs hurt. And I love to walk, so I started to dread going for a walk, even for 100 metres.
It had become an ordeal, I thought it was time for that to happen.
A final word for this article entitled “Testimony of Elodie?
If I can give you just one piece of advice: if you are diagnosed, don’t wait. Don’t wait for it to get worse.
Thank you very much Elodie for your testimony.