A Little Bit About Me….
I’m a 36 year old woman with stage 3 lipoedema which was only diagnosed last year after years of problems with my legs. I feel let down by medical professionals that I have historically seen and vow to finally receive the treatment I both need and deserve over the next year.
When researching this condition I found that there was not really a lot of information about the condition available and that treatment options are limited. I made a promise to myself that once I had my surgery I would blog about it to help all the other sufferers looking for information and gain a deeper insight into what treatments might entail.
After suffering with years of the indignity and pain of lipoedema I have now had two surgeries for this and am well on the road to recovery.
Anyone who is reading this will have an understanding of the difficulties that I have faced to get a diagnosis and any form of treatment. However, after years of trying to get treatment I found a fabulous surgeon who I instantly felt was the right person to help me last October.
Not being someone who would ever rush into anything as surgery I was surprised that I did not feel the need to ‘mull’ the situation over and called the surgeon to very next day to tell him that I wanted to go ahead.
Since being a child I have been ashamed of my legs. The impact that they have had on me mentally and physically has been immense. Reflecting on my younger years I can honestly say that they have prevented me from living the life that I would like to have. If I am honest and true to myself I have always had been interested in the way that I look…. what woman isn’t? Fashion and beauty has always been something that I have been magnetically drawn to and sadly for me, lipoedema has prevented me from looking the way I wanted.
As a young woman I was slim, very slim I guess. I wore a size 8 – even in jeans. However, even at a small size there was a big difference between my upper and lower body. I dieted, exercised and pretty much starved myself for years but no difference was made. I just put it down to the fact that I simply had rubbish legs. Over time I just began to accept that that was the way that I was and that I had to make the best of it.
I learnt how to dress well… its unbelievable the difference to both your confidence and your body that you can make simply by dressing well… I became completely addicted to fashion and beauty in order to make up for the terrible legs that nature had given me.
In retrospect,I made myself mentally ill through this self medication of shopping and beauty. Unbelievably, I had no idea that I was actually physically ill and that something could actually be done about my legs. The Aladdin’s Cave of Vuitton, Hermes and expensive clothes, bags and accessories have become a daily reminder of my personal struggle to make me ‘as good as anyone else’ and thinking of how I have used material items to treat my condition is crazy! A doctor should have known something just wasn’t right with me.
Medical professionals didn’t know what to do with me and I have been passed around vascular teams, plastic surgeons and doctors. No one really knew what was wrong with my legs and so I was told to diet more and exercise more. As a self- conscious young woman I was absolutely mortified that I had been told to lose weight and I took dangerous steps to reduce my weight which I won’t discuss openly. Of course, weight was lost and it didn’t come from the right areas! So my lipoedema started as a cosmetic issue really- no pain, no aching and certainly no mobility issues. I lived with it through my 20’s not talking to anyone about it because mainly I was just ashamed.
The beginning of my 30’s was a slightly different story. I had gained some weight towards my late 20’s and was wearing a size 14. It suited me, I had curves and was lucky enough to say I LOVED everything about my looks except my legs. The shape of them had changed and they felt different… Life was busy with my job as a SENCO in a challenging primary school and I probably didn’t pay the attention to my legs and arms as I should have done. Medical professionals didn’t think anything was wrong with me and I thought I had just put some weight on.
What was really happening to me was that my condition (that I didn’t yet know I had) was progressing rapidly. Slowly and without really realising , I was having a wide range of really horrible symptoms such as pain, loss of sensation and horrendous pins and needles. Coupled with the fact I had always had problems sitting on the floor since being a child, being cold a lot and the really awful bruising that occurred for no apparent reason. I just knew something was wrong with me. Oh, I almost forgot that because of the challenges of my job I would often be kicked or hurt by some poor little child who for no fault of their own was in crisis. The pain was absolutely be agonising and would go on for days afterwards,leaving bruising that made me look like I had been in a car crash; how could this be right?
I made a decision that I needed to push for an answer and anyone who knows me will tell you I am one determined lady. That is when I self diagnosed and I told the vascular team what was wrong with me and asked them to agree and acknowledge this with a letter. Which they did and this is how my diagnosis came about.