Sandra’s Story- My Lipoedema Legs

I was told by a consultant at St Thomas’s hospital in my early teens that my ‘large and lumpy’ legs were just puppy fat and they would go ‘back to normal’ after puberty. They never did and it wasn’t long before I was trialling every diet invented in my attempts to change the appearance of my legs. I ended up ‘dieting’ for the next 30 years and in 2010 I weighed in at my heaviest. I had severe foot, hip and knee pain and was diagnosed with Fibromyalgia.

I am a Leadership Trainer and Coach. I was so very low and felt a fraud, asking myself how I was able to help others achieve their goals as a coach, but despite all my efforts ‘dieting’ I was unable to change the appearance of my legs and instead was using food to comfort myself from the negative effects they were creating in so many ways.

I stopped dieting and started putting into practice various creative tools and techniques I have learnt and practiced as a coach, on myself. I went on to release 5.5 stone easily and effortlessly over the next 11 months. Weight, which I am pleased to report, has remained off over the last five years, albeit the appearance of my legs had not changed.

With a ‘perfect’ BMI I went to see my GP who has always been very aware of the issue with my legs and unhealthy relationship with food. I asked her what else I could do to change the size and look of my legs. She told me it was just fat and wrote down the name of a plastic surgeon who might be able to help me, at my own cost. This wasn’t an option for me at that time and I decided to try to accept ‘my legs’ and attempt to live a happier life.

This situation remained until my eldest daughter happened to watch a YouTube video about a girl with Lipoedema, ‘Mum’ she proclaimed, ‘This is your story and these are your legs’!

So, I attended my first Lipoedema UK Conference in June 2016. My decision was very last minute, as I had literally just stumbled across the possibility I had Lipoedema. 

As I walked into the venue and looked around me to see a room full of women with legs like mine, I knew there was no doubt about it!    

Sandra and her two daughters

Understandably, it turned out to be an ‘emotional roller coaster’ of a day, concluding with a very emphatic and inspirational presentation by the Chair, Sharie Fetzer. I decided there and then, that I would do all I could to support Lipoedema UK to raise awareness of a condition that has massively influenced my life experience, my two daughter’s, my Mother and her sister’s too.

I have subsequently gone on to help Sharie with administrational sponsorship duties, attended awareness events at GP conferences, presented my own Lipoedema story to the nurses and GP’s at my own Medical Health Centre, as well as delivering Mindfulness workshops at recent conferences. 

Lockdown last year, led to an opportunity for me to launch a live on-line Health and Wellbeing Community programme for our members. I know how much living with Lipoedema has affected my physical and emotional health and recognise the feelings of loneliness or ‘being the odd one out’. I understand how it can reduce our confidence and self-esteem. To be able to offer a free, weekly forum to share a balanced mix of medical information, relevant exercise and wide range of health and well-being bitesize workshops with ‘lipoedema sisters’, from the programmes I have delivered for the NHS, has been a much enjoyable and heartening experience.