Lipedema and me

By Sylvie Giroux

Have you ever wondered how it would feel to have healthy and beautiful legs? I sure did! More than once! Legs like dancers…slim yet muscular. Being short, I knew I would never have those long legs but I thought I could at least have slim ones. No matter how much calve or thigh exercises I did my legs would remain the same. I just thought I had huge legs muscles!  But as I grew older, I looked more and more like a pear. Had no idea why I was slim on top and this round on the bottom part of me!

To be honest, as long as I can remember, I always had a disproportion between my upper body and my legs. I would bruise easily too and for most of my life, I would try to hide my big thighs and was quite ashamed of them. At times, boys would make hurtful comments, which made me feel even more uncomfortable about they way I looked. I became to feel really uncomfortable about wearing a bathing suit in the summer and started wearing skirts only during the hot season! I was envious of all the others teen girls and what seemed to me their “perfect legs”! Funny I was attracting guys…could not understand why though and credited my killer smile for it!

I did get married in my early twenties, had three pregnancies and the last one was the most difficult for me, health wise since my legs swelled a lot. Since I was pain free back then, I just thought it was something having to do with hormones and that the swelling would go away after the birth. And it did. Many years later, in 2009, after some serious family problems, I ended up in depression and took a medication called Remeron. While taking it, I put on some weight. Even after stopping it...the weight gain continued and my thighs got bigger, my tiny waist was gone and my upper arms got bigger too. I had no idea why this was happening because I was not eating like a pig so I blamed it on the medication! My GP would only tell me that I was getting fat and that I needed to do something to loose weight since I had gained over 35 pounds in less than 2 years....I tried dieting, and nothing worked. To top it off, I felt tired all the time...I can't even remember when I did feel full of energy. I also had lots of headaches.

In October 2011, while at a friend's birthday party, something changed for me! A friend of my dear friend was there as well and he heard me say to a lady friend that I had gained a lot of weight since 2009. He came to me, told me he was a massage therapist who specialized in treating people with lipedema and lymphoedema and he asked me many questions about my legs. Then he explained what is lipedema and suggested I went to his clinic. He said that he was quite sure I had lipedema and I started the Manual Lymphatic Drainage at his private clinic after that. I was not diagnosed by a doctor because here, we don't seem to have any specialist for that in Montreal, Canada. At first, I felt both discouraged and relieved. At least, someone seemed to believe me and did not think I was "Fat" and all the symptoms I had over the years (constant fatigue, bruising, inability to loose the fat on my thighs) were all related to lipedema! Summer of 2011 was tough, had a lot of pain in my legs but this summer, not much at all...

I went to my GP again with all the information I could find on lipedema. She had no idea what I was talking about. Lately, I spoke with a PT who treats women with lymphoedema and she suggested I call a vascular surgeon in Montreal that may be able to "confirm" the diagnosis but she is not sure about that though. My MLD therapist was trained in Germany, he is treating lymphoedema and lipedema patients, he uses the Vodder technique and he told me that if I ever want to have a liposuction, I would have to go to Germany to have it. Because here, the surgeons could do more damage than good to my legs. 

From different support groups on Facebook I have met ladies suffering from lipedema, from USA, Europe, Australia and Africa and I have gained more knowledge about lipedema, what I should avoid eating and so much more. I no longer feel alone and this makes a huge difference for me. I'm exercising and I'm off wheat and follow a low-carb diet. I have my mind set on doing everything I can to not only manage this condition and to do my part in helping others suffering from it and I'm sure that with effort, more knowledge and time, we will be able to find a cure! I will post more about diet and exercises in another blog!

If any of you have a similar story to mine, KNOW that you are not alone!

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