One evening around the beginning of May 2016 my eldest daughter Charlotte was watching videos on YouTube in our sitting room. ‘Quick mum, come here, you have got to watch this’ she shouted. ‘This is your story, these are your legs’.
I went and had a look. Yes, this story was very similar to mine and yes, my legs did look like the ones in the video. ‘Mum it’s a disease called Lipoedema. I think you, me, and Georgina (my other daughter) have it.’ We must investigate this now’, she proclaimed.
This fateful moment is where my Lipoedema journey of discovery started.
Life before my Lipoedema Diagnosis
I have always had big legs for as long as I can remember. Around the age of 12 years, not only were my legs bigger than any one in my year at school, they were also ‘bumpy’ in appearance.
My legs were out of proportion with my top half. I felt embarrassed to do PE as others looked at me disgust, made horrible comments and called me nicknames like ‘tree trunk’ legs amongst others.
My mum and dad knew how much this hurt me and took me to see various practitioners to seek help. No one could offer a solution and I recall a visit to see a consultant at St. Thomas’s hospital who concluded ‘this is puppy fat’ and it will disappear in the next couple of years.
Of course it didn’t. I loathed my legs and myself for clearly being a ‘fat and greedy’ girl who had created these monstrosities. I started depriving myself of food to get my legs slim and so my unhealthy relationship with food started with subsequently 30 years of yoyo dieting followed.
I have spent hundreds of pounds trying every diet doing the rounds, and on books and exercise DVD’s and equipment. None of them worked. I believed I was a ‘fat failure’ and so I would head to the biscuit tin again for comfort.
I made excuses to get out of party invites, not knowing what to wear.
I stopped playing tennis and netball because of the increasingly disapproving looks I felt at a deeply embarrassing level.
Buying clothes was a nightmare and I was always so grateful that mum was able to sew the waists of skirts and trousers to fit my disproportionate waist measurement to my hips and thighs.
I dreaded holidays. Even when I was married, when I was packing, mum would sit on the end of my bed as I sifted through the best ‘cover up’ clothes I could bear to wear, through tears of despair.
My legs were a major limiting factor in affecting my choices in lots of ways, as well as general enjoyment and fun in my teenage years.
Sadly, this continued into my twenties and thirties too. My large, lumpy legs have negatively impacted my life experience in my marriage, with my children, my work and my friendships.
My M-A-G-I-C Weight Loss
Summer 2010, I weighed my heaviest ever, despite my dieting efforts. I was suffering with foot, knee and hip pain. I was struggling to walk the short distance to pick my daughter up from primary school. I was diagnosed with Fibromyalgia.
As a Leadership and Management trainer and coach I supported others to achieve their goals and subsequent contentment and joy from their deserved success.
How could I continue to do this if I couldn’t help myself? Enough was enough. I stopped dieting and declared I would never diet again.
Instead I decided to apply all the tools and techniques I have learnt through my coaching training and personal development towards myself.
The outcome was amazing. Within eleven months I had easily and effortlessly released 5.5 stone.
Off I went to see my Doctor. Pleased to report I was just below my target BMI, however, still perplexed that the appearance of my legs had hardly changed. How much more weight could I lose? How much more exercise could I do?
‘It’s just fat Sandra’, my GP declared and wrote out the name of a local plastic surgeon she suggested I might like to contact to discuss liposuction. Whilst pointing out, the NHS couldn’t fund this.
Financially this wasn’t an option for me at the time and also listening to some advice of a dear friend of mine who had previously practised as a nurse with a plastic surgeon, I decided I wasn’t going to consider this at this time (this has proved to be a wise decision in retrospect).
With reflection, I decided it was time to accept my legs as they are. I was healthy, at the ‘ideal’ weight, more mobile and in much less pain. It was time to move on and attempt to relax a little, feel comfortable with myself, be kind to myself and enjoy life more.
Bar an unexplained attack of Thyroiditis a couple of years later, I continued in good health.
I went on to develop my M-A-G-I-C set of tools and techniques and enjoyed sharing these, in my role as a transformational coach, to help many other women successfully release weight, alongside my other training work.
My Lipoedema Diagnosis
In the first couple of months of 2016 I was becoming more aware of changes in my health. Clearly I was starting my menopause and strangely my legs were starting to change too, in their size (they were getting bigger), their shape (more lumpy), their texture (the fat lumps felt harder) and I was experiencing increased pain.
I knew my GP wouldn’t understand, so I decided to embark on some acupuncture sessions, as acupuncture has proved hugely successful for me with different conditions over the years. This time, however, after several treatments we weren’t achieving any positive changes.
The acupuncturist suggested I book a visit to see a lady operating in the same clinic, focussing on Manual Lymphatic Drainage (MLD) Massage. He had never met her, but felt it might be helpful. I had never heard of it, but definitely thought it would be worth investigating.
My first appointment happened to be booked in at the end of the week in which I had watched the YouTube video about ‘my legs’.
I must confess after watching the YouTube video, I went into a bit of denial about this so-called ‘Lipoedema’ condition. Questions like: ‘Is that story legitimate?’, ‘Why have I never heard of this before?’, ‘Why have the Doctors not told me about this, nor the numerous health professionals I have always made a point of asking in various medical assessments I have had over the years?’.
I didn’t want to think about it.
A couple of days later, with these thoughts firmly planted at the back of my mind, I went off to meet the massage therapist. Minutes into the assessment, the therapist gently asked, ‘Have you ever heard of a condition called Lipoedema?’
She went on to explain that she had trained in Germany over twenty years ago and this condition was recognised in Germany then and yet it isn’t currently so much in the UK. She expressed she was 100% certain I had it.
This was an uncanny coincidence. ‘Potentially I had Lipoedema?’ I was shocked, upset and then I felt angry.
Around 40 years ago I believed through my greed I had created fat and ugly legs. This belief had led to decades of a very unhealthy relationship with food, cost a lot of money, created a lot of sadness and influenced my choices to lead my life in ways perhaps I wouldn’t have done if I had known this wasn’t the truth. How come none of the medical professionals have never told me the truth? I concluded I had lived my life on false pretences. Oh, the power of our beliefs!
I really didn’t want to acknowledge this, however this isn’t just about me. My daughters also have Lipoedema and I certainly don’t want them to suffer like I have done. I resolved that I needed to seek out a plan of action to help myself and them and future generations.
Suffice to say, with immediate effect I set out on my Lipoedema journey with, I am truly blessed to report, some amazing people that have appeared in such a short space of time to guide and support me on my way.
Two weeks after seeing the MLD Therapist, I attended the Lipoedema UK Conference which she told me about. I met some amazing women (with bodies that all looked like mine… so surreal!) and learnt so much.
Four weeks after the conference, I was diagnosed with Lipoedema, after my 6 month referral to see a consultant was unexpectedly changed to my advantage. I met a great Lipoedema nurse and another massage therapist and gained lots of helpful information.
Moving Forward with Lipoedema Treatments
Following some more unexpected interventions, I have just met Glen Brice with my daughters at St George’s. I am very pleased and proud to be the first to sign up to their current Lipoedema research project. We are now seeing his colleague, Dr K Gordon at St George’s.
I am taking one step at a time, doing what I feel is right for me and my family.
I have slowly started to make some nutritional changes, undertake some specific daily pilates exercises and wear my compressions. There are more actions I have chosen to commit to doing, but I am conscious to not attempt too much in one go. I am curious where this journey is going to take me.
My Work with Lipoedema UK
I became a member of Lipoedema UK in the Autumn of 2016.
This is a wonderful charity that was founded in 2012 by women with Lipoedema, and the Lymphoedema Service at St George’s Hospital in London.
Their focus is to educate doctors, health professionals and the public about Lipoedema and its symptoms, so it may be diagnosed and treated earlier.
You too can join, if you are impacted by Lipoedema, for £25 per year and access so much support.
Through my connection to the Charity, and my personal journey and professional background in transformational coaching and training, I am now one of their speakers that runs supportive webinars for members.
If you are a member and you’d like to come along, I am presenting on 1 February on 2024 about Lipoedema and Navigating Change in our lives.