This section contains patient experience stories by individuals living with lipoedema. The views expressed are those of the authors, are not intended to replace advice from healthcare professionals and fall outside the scope of the Information Standard.

In 1979 I was 14 years old and the dreadfully sexist single, Nice Legs, Shame About Her Face, by The Monks was at number 19 in the charts.

I had a Saturday job working on my aunt’s market stall, and noticed three boys leaning over the balcony above the main hall looking at me and laughing amongst themselves. Suddenly, they caught my eye, and all three, loudly and in unison, screamed down at me: “Nice face, shame about the legs!”

This horrible moment, combined with my own shame and hatred of my horrible, fat, ‘tree trunk’ legs set me on a path of madcap diet and exercise regimes. If I was too fat, clearly I had to diet and then I would get thin, right?

Well no. My legs just got inexplicably bigger and bigger and despite my still slim waist, I eventually hit a BMI of 30 which made me officially ‘obese.’ In spite of all the dieting, exercising, massaging and fat-pummelling, the only thing that ever shrunk was my self-esteem, and all I got for my efforts was an eating disorder.

It was 32 years after the market stall humiliation that I discovered my fat legs are not in fact my fault. I had lipoedema, 
a disfiguring, disabling, genetic disease that lays down heavy, painful layers of fat on the legs and upper arms during periods of hormonal change, regardless of what you eat or how much or little exercise you do. It made sense; I’d been quite a skinny child, the legs first ballooned at puberty.

I was diagnosed only by chance, while being treated for osteoarthritis at St George’s Hospital in South West London. The Consultant who examined me took one look at my unusually big ankles and referred me to lymphoedema/lipoedema specialist Professor Peter Mortimer and his team. I was seen by Nurse Consultant Sandy Ellis, who diagnosed me within seconds of my walking in through the door. It made sense of so much, not least the osteoarthritis which is common in lipodema patients.

The diagnosis itself was both liberating and depressing. The first thing I did after the appointment was deliver the bad news to my daughter and my mother, to tell them they had it too. For us, lipoedema is a ‘family disease.’

My daughter burst into tears. She too hated her legs and
like me had been hoping against hope she could do something, anything, about them. While knowing the fat wasn’t our fault meant we could stop blaming ourselves, knowing we were stuck with it was awful.

I felt I had no option but to take action and set up an organisation that would spread the news about this dreadful disease, about which, even doctors know so little, let alone the general public. There is no cure, no consensus on treatment or cause, and very little help available on the NHS. Apart from being fitted for compression tights, which are said to stop the disease progressing, and being told to avoid red wine and salt, there is little the NHS can really do right now. But what we can do is make sure doctors are informed and know what lipoedema is, and how it differs from lymphoedema, so they can correctly identify sufferers rather than just dismiss us as ‘fat,’ hand out completely the wrong advice, and compound our suffering.

Needless to say, there is a desperate need for more research into viable treatments and much more support and information needs to be given to sufferers. This is the aim of Lipoedema UK, the Charitable Association I have set up with my mother, my daughter and a friend who also has lipoedema. Ultimately, we hope to open a dedicated support and treatment centre. Meanwhile, our job is to inform, raise awareness, and give what practical advice we can to halt the pain and progression of this disease.

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I first went to my GP last November, a long overdue appointment (by several years in fact!), to speak to him about my concerns about the size and shape of my legs, which had got progressively larger and column like. By the time I went to see my GP, my legs looked like I was wearing a pair of skin trousers, my ankles bulging with a swollen fat ring round them which had started to droop with the weight and head for the ground. My feet, however, looked as small and neat as ever. I had assumed till then that it was caused by my inability to lose weight or fluid retention, believing my metabolism was slow. It didn’t matter how often I cut down on food, eating less and less over the years, I never went down in weight. I was no longer able to wear normal trousers, wearing only wide leg trousers in a larger size to accommodate my hips/thighs.

After an initial referral to a vascular surgeon for diagnosis, I was diagnosed with chronic bilateral lymphoedema, measured for Grade 3 knee high compression, and referred on to a local lymphoedema specialist clinic. After diagnosis, I went looking for some information about lymphoedema and came across the Lymphoedema Support Network website where I found an article on a condition I had never heard of before, lipoedema. I read the patient’s experience article and something in there rang a bell for me, so much so, that I started looking on the internet for any other information I could find on lipoedema. I came across one website with pictures and it was with mixed emotions that I realised that the photo could easily have been taken of me, it was exactly like my legs. Going through their checklist for telling the difference between lymphoedema and lipoedema, I realised that I was ticking all the boxes for lipoedema, not lymphoedema.

I discovered that lipoedema was hereditary, and that raised many questions with regard to my family. My family and I have discussed at length whether anyone else had (as we called it) “big legs”. I now know that my great grandmother on mum’s side had lymphoedema. Other members of the family were particularly ‘hippy’, and disproportionately large on their bottom half and upper arms.

The Grade 3 compression garments deserve a paragraph all of their own. It was one of the most excruciatingly painful experiences I have ever gone through. It was right up there with the labour pain I experienced when having my kids. It was painful getting them on, having them on, and getting them off. I cried for days, the pain was so bad, and the despair at the thought of having to go through that experience every day for the rest of my life was absolutely crushing. For the first week of wearing them, and I did persevere and wear them all day, every day, I had to sleep with my feet sticking out the bed on a beanbag after taking them off in the evening – even a slight breeze on my skin hurt.

I signed up to the UK Lymph forums online, and one day after another traumatic experience getting my garments on, I posted a message about the pain I was experiencing. An MLD therapist answered me and I spoke at length to her, telling her all my symptoms and concerns. The therapist stated that she suspected I had lipoedema and not lymphoedema and strongly advised me to contact an MLD therapist and to also push for a referral somewhere that lipoedema could be diagnosed. It was the best thing I could have done.

I contacted a local MLD therapist, she had no doubt that I had lipoedema, the only question was whether I also had secondary lymphoedema as a result of the lipoedema. The first time I had an appointment she asked me how I felt now that I knew that it was not obesity, but lipoedema. I have spent most of my adult life battling in some way or other with my weight, so it is really hard not to still feel that it’s my fault, but this is the first time that I did not receive a completely negative opinion about my body, and emotionally that was quite overwhelming for me. I think, like so many women, I’ve lived in silence with the shame of my failure to control my weight: it had never occurred to me that it was out of my control.

I saw my therapist frequently for the first few weeks and I cannot express just how much of a difference this has made to my life. My life now bears no comparison to the way I had been living before MLD. For years I had endured daily pain in my legs, hips, back, stomach and more recently in my upper arms; unable to bear any kind of pressure, and feeling like I was always complaining about feeling ill or sore, worried that others would think me a hypochondriac. Bed had become a particular torture for me, I spent every night flipping backwards and forwards due to the pain I experienced in my hips and back, never managing to lie for longer than a few minutes before the pain got too bad.

After just a few MLD treatments I was able to lie on my side in bed, read my book for 15-20 minutes, and then fall asleep without turning – all without flipping backwards and forwards! The back pain in my lower back I had suffered from for years and always believed was due to my spine was caused by the lipoedema and the accumulation of fluid. Since my MLD therapist started to clear my back of fluid, the pain has virtually gone.

My referral to the lymphoedema specialist clinic came through, and I was given an official diagnosis of lipoedema and measured for waist down compression. The biggest relief I felt on official diagnosis was psychological; confirmation that I did have lipoedema, and that I did not have to yet again try to convince somebody that I wasn’t just obese and not controlling my weight. The compression garments have a made a huge difference to my quality of life also, they help to keep away the tired heavy legs and I can now go for a short walk with my family without paying the price for it later.

Manual Lymphatic Drainage was not offered as an option to me, it isn’t available on the NHS on an on-going maintenance basis. I was told that there is no current evidence that MLD works effectively as pain relief for lipoedema. I respect their opinion and experience, but I can personally testify that it does reduce my pain, and it does help with my general health. For years I could only describe it as feeling ‘yukky’ – upset stomachs, diarrhoea, bloated stomach, just general malaise. Since I started MLD I have felt so much better and healthier within myself.

I have to say that despite the initial wrong diagnosis I am incredibly grateful to my vascular surgeon, because without his intervention and subsequent referral, I would still be slowly losing my mobility and suffering ill health in so many ways and beating myself up for my (perceived) failure to be able to lose weight. He sent me to the right place to get a diagnosis and the treatment that is available to me. What I did not appreciate at the time, was just how few doctors know about lipoedema, the lack of information available about it or the availability of treatment for it within the NHS. The more I talk to others, the more conscious I am that there is so very little out there for people like me.

I’ve very casually mentioned I started MLD and continue to go for this, but this is all having to be funded privately. I’ve been told I won’t receive MLD as ongoing maintenance, but given the significant pain reduction and improved health and wellbeing I have experienced as a direct result from MLD treatment, I will continue to go for MLD. That’s not to say that this has not caused financial hardship. I was fortunate to have been awarded a small amount of funding from MLD^UK’s Lymfund, fortunate to have a mother who could help, and fortunate that I have such good friends that they organised a fundraising event to raise money to pay for several months’ treatment. How many people are out there that haven’t had those opportunities though – and part of me feels completely cheated by the NHS that the option to obtain the necessary treatment is not there. I feel that some study should be conducted with regard to the level of pain experienced before and after MLD treatment. How can anyone tell me that my pain reduction is not a valid outcome, when that pain reduction has given me a quality of life back that I had lost.

Since my diagnosis I’ve spent a lot of time looking back over my life, trying to place where lipoedema and I started our relationship together. In my teens my calves were always quite large, I wasn’t able to wear fashionable boots. At the time I thought it was genetic – mum had heavy calves too. Looking back to my 20s I can see that my body was already beginning to not work right. I would exercise for several hours a day and then suffer from a huge build up of fluid in my body which would take a couple of days to go down. Although I lost a dramatic amount of weight, still my legs remained much the same and appeared to be quite healthily ‘chunky’ despite my upper body being quite emaciated. It was a source of frustration at the time that I could not shift it, but I now know why!

I had my three children at age 21, 24 and 29; each pregnancy contributing to my changing shape and the increase in the size of my legs. After my first pregnancy, I had developed a pronounced ‘apron’ on my stomach that, despite my weight being around 7 stone, would not reduce in any way. I now know that this was lipoedema beginning to make its presence felt.

By my 30s my legs were heavy and tired, but still I believed I merely suffered from fluid retention that would clear (if only I had time to put my feet up!). My size and weight was very slowly, but steadily, creeping upwards despite any diet I tried. By age 34 that was when the constant toothachey nagging pain in my back began, by age 36 the pain in my back and the sensitivity to pressure on the lower half of my body had got to the stage where I seemed to be complaining of pain all the time. By age 36-37 that was when the constant pain in my hips began to affect me sleeping and it was by now affecting all areas of my life.

By age 40 the fluid in my ankles had long since stopped going back down if I elevated my feet, and over the next 4 years my ankles became more and more distorted. And here I am now, age 44, and for the first time in years experiencing some pain free days thanks to Manual Lymphatic Drainage and compression garments. Between the two, and careful monitoring of what I am eating, I am experiencing a quality of life again.

Everything in my life is affected by lipoedema. We love going to theatre and festival shows but now I have to think about what kind of chairs are there, could I sit in them for any length of time, will I be at risk of people accidently bumping into my arms/legs etc. Trips out are always curtailed because of me, if I do too much, the heavy dragging feeling in my legs comes back, the pain experienced afterwards just isn’t worth it. On top of this should also be added the psychological trauma which isn’t seen or evaluated or the psychological damage from living with lipoedemic pain long term.

Coping with my shape, my size, my appearance, all have chipped away at my self confidence over the years, at my self esteem. I hate to see myself in the mirror – I joke with people about my condition, it’s my way of coping, I talk about my ‘tree trunks’ and my built-in ‘sumo suit’, but I don’t find it funny and when I’m on my own I’m not laughing. I don’t like people to see me low, so when I feel low I end up crying on my own. On a bad day I feel that it’s a life sentence I’ve been given. On my good days I think it’s fine I can cope with it, I’m doing everything I can to help myself so things could be much worse, although I know that no matter how much I try to do all the right things, still the lipoedema will progress. I know things are much worse for some other people, but it doesn’t negate my feelings.

My mum has just recently started MLD treatment because after me being diagnosed, it appears that mum too has lipoedema. She’s been in pain for years now, which was written off as a variety of things; old age, arthritis, etc. For the first time in years my mum is now experiencing pain free days too – it’s a priceless feeling for both of us.

I searched the internet for any kind of support I could find for lipoedema - that was an eye opener! There were no support groups to be found anywhere in the UK, let alone in Scotland. There are some online support groups, although primarily they are US based, but it just isn’t the same as being able to meet up with other people. It was then that I decided that something had to be done – if I wanted a support group then I would just have to start one myself. So I have.

I have started a support group in Edinburgh for sufferers, carers and professionals (contact details below) – hopefully the group will be able to offer a mix of emotional support with some professional advice and support too. I am hopeful that with some local advertising we will be able to start reaching more people living with undiagnosed lipoedema. I feel that if medical knowledge and training is not there, and full support needed is not being fully offered through the NHS, then as a group we will achieve a far bigger voice standing together asking for support than standing on our own.