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.

The circulatory system works off the heart, the lymphatic system works off movement.

When I was a junior (16-17) at High School in sunny California, I will never forget the day a boy I knew coming up to me and asking, “Kay, why do your legs go straight down?” I still remember his name, Harvey; he wasn’t trying to be mean, he was just curious. He had known me for sometime and obviously noticed the change. I never noticed it. 
I was a very athletic child but around the time of Harvey’s question, I wasn’t playing as much sport and had to come home and be sedentary. I also hit puberty at this time. 

In my early 20’s, I started to notice fat on the back of my legs. But again, didn’t give it much thought.  

At 25 I moved out of my family’s small town and moved several hours west, to beautiful San Diego. The first few years or so in San Diego were good. I got settled, found a job, went to the beaches and made new friends. Then I started to notice, my legs were changing. I became more aware of this change. Became slightly embarrassed, stopped going to the beach as much. I started to go to the gym more, twice a day sometimes thinking this would help. I started eating, what I thought was healthy food, only now do I know about all of the hidden sugars, preservatives, additives, empty calories that are added to what is advertised as ‘Healthy Foods’. Nothing seemed to be helping.
I was going up and down in weight. When I went down in weight there was still no difference to my legs. By my late 20’s early 30’s my legs had got worse. I couldn’t understand what was happening. It became a very emotional time for me. I pretty much dealt with it in silence. Though there were a few friends that witnessed my grief. But I just got on with it the best I could.

I was a Dental Assistant; I stood for long periods of the day and by the time I would get home my legs would be so painful and swollen that one day I realized I needed to seek expert advice. I don’t know how I came to visit Dr. Bergen but I’m so glad I did. He’s a wonderful doctor who is full of compassion and with that passion brought a feeling that I was not alone.  At that time, Dr. Bergen didn’t know what it was, he believed it was vascular but felt the only option to relieve my discomfort was liposuction. I went for a consultation, but it was way too expensive, so several years went by and my legs continued getting worse. By now the psychological trauma was setting in.
A friend of mine suggested I should go to see a surgeon of hers. She said he wasn’t expensive and that he might be able to help. I had a consultation and was delirious with emotion that someone was going to help me. I just cried with relief.  I was hoping that this doctor would take away the ugliness.

Three surgeries later and there wasn’t much difference. By this time I was no longer wearing skirts or shorts, I was basically hiding my legs. I thought I had brought this upon myself. So I got on with life. Luckily for me, I’ve always been a happy person, had faith, and have been blessed with amazing friends.

Then one day my knight in shining armour entered my life, the year was 1997. His name is Bill and he is my husband. Bill has been my biggest supporter and greatest comfort. 
I came to London for the first time in December 1997 and Bill suggested Manual Lymphatic Drainage (MLD), he thought it might help. On my next visit to London in the summer of 1998 I made an appointment for an MLD treatment. This was the first time I heard the word Lipoedema. I was taken by such surprise, IT had a name. From then on I was determined to understand what it was and what I could do about it. I was 34.

I moved to London in 1999. Started working with an MLD specialist named, Dee Jones. But nothing was helping. Though something kept nagging at me, I had this intuitive feeling that nutrition was part of the healing process. 

In the year 2000 I studied with Anne Vadgama and gained a certificate in the field of MLD. Anne is an amazing and caring teacher.
I thought, I need to help myself, and also help any of my offspring. You see, this runs in my family. 

After completing my course with Anne, I went back to California for several months. I joined a gym and lucky for me met an amazing trainer named Dave. Oh my goodness! My body started changing and so did my legs. Of course the Lipoedema was the same but my legs started getting smaller, the swelling reduced. At the same time my trainer put me on a strict diet of lean protein and lots of vegetables.  After about three months I looked at my legs and thought to myself, I could wear stockings and not be so afraid to show my legs. I was elated! And at that same time my happiness was intensified because I was about to get married. That was in December 2000. I felt beautiful on my wedding day and even looked at my legs and thought, WOW! They look pretty darn good!!!   That was a really good feeling.

When we came back to London, I tried to keep up with the same workout routine and eating plan but without my trainer’s guidance I started to put the weight back on. Then the pain came back. I called Dr. Bergen. He referred me to Dr. Hobbs, who referred me to Dr. Chelin. Dr. Hobbs believed that another surgery with Dr. Chelin could help. This surgery was my fourth and took place in 2002. (The results were minimal.)

After a conversation with Bill I realized nutrition was the field I wanted to get into. So I started on a journey of study.

In 2004, at the age of 41, I completed a home study course with the Institute For Optimum Nutrition.   During that year of study, I met another amazing personal trainer who not only physically changed my physique but also affected me mentally with his intuitive knowledge and years of study. His name is Bruce Davies. As of March 2010, I will have been training with Bruce for seven years. He is not only my trainer; he has also become a very close friend. Bruce has worked hard with me, he is continuously brainstorming to understand what exercise will work best for my legs, and subsequently my legs have responded very well. 

After completing the home study course with the Institute for Optimum Nutrition, always having the Lipoedema sufferer in mind and wanting so much to tell others what the right kind of exercise and nutrition can do, I felt that now was the time to achieve more.  In February 2006, I started a three year diploma course with The College of Naturopathic Medicine.   

From implementing what I’ve learnt from my studies thus far, focusing on a non-inflammatory diet and exercise and witnessing the dramatic results I’ve gained from doing so, I believe wholeheartedly that this is the key to living a healthy life with Lipoedema.

In the year 2007, my mother-in-law sent me an article from the Daily Mail, titled, ‘My wife suffers with Lipoedema’. I was shocked! Here in front of me, was an article about Lipoedema, in print! I was almost in disbelief. The last time I believed there was anything in print on Lipoedema was in 1940 when it was first clinically recognized.
The article contained the name Professor Peter Mortimer. The first time I heard of Professor Mortimer was when I met with Dee Jones. I became so excited and thought the doctors must be looking into the disease. The article also described how Mr. Ross was using a new procedure with his Lipoedema patients and that he was achieving good results. I believe I made an appointment with Mr. Ross the very next day.

I had already decided I was not going to have any more surgeries, but after my consultation with Mr. Ross, I set a date for my 5th surgery. The reason I agreed to the surgery was because I was still in a lot of pain when I didn’t train aggressively. I knew that due to aging I would not always be able to train as hard as I am now. I understood that this new procedure could remove the tissue that was causing the congestion and creating the pain.
My surgery took place June 2007. It’s been two years now and I’m grateful for the surgery.

A year ago I had a serious neck injury which meant I was very restricted with what movements I could do. And astoundingly, my legs didn’t swell.    
Please keep in mind that I was exercising up to the point of my injury and I am very careful with my nutrition so the three together played their integral parts.

I have come to accept my Lipoedema, I work with it. I used to feel so detached from my legs. Now I feel they are a part of me. I still swell at times and there is still some pain but this is when I haven’t been active and this just reconfirms my belief that exercise and nutrition go hand in hand in managing Lipoedema.

I am not yet completely comfortable showing my legs, I believe this is from years of psychological trauma, however, this is something I am working on and it’s steadily improving.  I know my legs look better, more importantly, they FEEL better now than they have in the last 20 years and that is something to definitely smile about!!!  
I believe this condition has made me a better person. More compassionate, more empathetic, I long to help others. 

October of 2009, I finally met with, for me, the mysterious Professor Peter Mortimer, eleven years after hearing his name. This doctor who I understood was tirelessly working to improve the lives of Lymphoedema and Lipoedema patients.  How grateful I was to sit and talk with Professor Mortimer. I had so much to say. It was humbling for me to have him listen to all that I have learned in living with Lipoedema. I thanked him for all that he is doing. 
We corresponded by letter after our meeting. Professor Mortimer suggested I get in contact with Anita Wallace at the Lymphoedema Support Network. I have subsequently met with Anita and the outcome of our meeting was more then I could have wished for.  I look forward to being a part of bringing awareness of Lipoedema to the forefront.

My personal goal is to reach the young Lipoedema sufferer, to educate them. I believe without a shadow of a doubt that if we do this we can prevent the extreme swelling and pain, the psychological trauma, and the surgeries.

Movement, along with the right nutrition, I believe, is the key to living with Lipoedema.    

We all have a story to tell and a journey to walk, this is mine.

To join my Facebook group, register at www.facebook.com, then search for my group which is called 'Living with Lipoedema support and hope'.

First let me start off by quoting someone who I have gained a tremendous amount of my information from and admire for his dedication to health, Dr. Andrew Weil.
Dr. Andrew Weil says, the word diet automatically makes people think that they are going on a calorie restrictive eating plan. Not so when talking about an anti-inflammatory diet. The anti-inflammatory diet is not a diet per se - instead, it's a way of eating that focuses on more of certain types of foods and eating less of others, with the goal of preventing and easing chronic inflammation in the body.

Over the years I have been able to successfully manage my Lipoedema with an anti-inflammatory diet.

Food options that have worked for me

Breakfast examples: 

• Green tea or a Soy latte or hot water with lemon or any other herbal tea.
• A fruit smoothie made with either Soy or rice dream or almond milk mixed with fresh or frozen berries, a banana, and a tablespoon of ground flaxseed.  
  (This smoothie is packed with protein, antioxidants, omega 3 fatty acids and other minerals. A powerhouse of a breakfast.)
• Oatmeal with organic milk, or Soy, or oat milk, made with nuts like walnuts or almonds, include berries or a cut up banana or a cut up apple or pear.
• Ouinoa or millet or amaranth mixed with nuts or left over protein from the night before with a tablespoon of olive oil or goat’s yogurt. You can also use these grains as a side dish or mixed with a salad with your lunch or dinner.
• A vegetable omelette.

Some of the foods that I have mentioned you may not have heard of, like Quinoa. Quinoa is a super nutritious food and though Quinoa is a grain, it has all 9 essential amino acids vital for the growth and repair of cells. So open your mind to discovering new foods especially when they are good for your health and the health of your legs. And their quite yummy too! 

Lunch and Dinner examples:

• Salad of romaine and spinach leaves made with chick peas or any other kind of beans, with cut up carrot and cucumber and a small amount of goats cheese or parmesan cheese (optional) with a small piece of chicken or fish also (optional).
• A 4-6 ounce piece of fish or chicken or lean red meat seasoned with fresh herbs and a little olive oil. Teamed with steamed or roasted vegetables or salad with a little olive oil drizzled over top.
• Fresh homemade soup with lots of vegetables and some cut up chicken or fish, whichever you prefer. Be careful of adding too much salt. Try and get used to reducing your salt intake and start using other herbs and spices like ginger, garlic, onion, turmeric, thyme and red pepper or any other herb you might have growing out in your garden. 

When choosing vegetables look for colour; colour means antioxidants. Antioxidants keep our cells healthy. Also eat lots of cruciferous green vegetables like broccoli, spinach, Brussels sprouts, cabbage and kale. Cruciferous vegetables are rich in B vitamins and antioxidants.  

I always have, what I call, a cheat meal once a week.  Of course don’t over indulge but do enjoy a favourite meal like some pizza or a burger. It makes for a special treat!

Healthy snacks mid-morning and mid-afternoon is something that works for me. By eating small meals every 3-4 hours you’re keeping your blood sugar balanced and also keeps you from going hungry, resulting sometimes in making poor food choices.

Snacks can be anywhere from a small piece of leftover protein to an apple with a small handful of nuts like, almonds and walnuts ( 7-10  is about a small handful), or a piece of toast with nut butter, like peanut butter or almond butter. Also one of my favourite snacks in the afternoon is a piece of toast with olive oil drizzled on top, or a piece of toast with some tuna or mackerel on top. An apple and a piece of cheese are always nice. But remember, if you’re going to eat cheese, a small amount will do.   

Beware of dried fruit, a little is ok, just don’t overdo it as dried fruit is basically concentrated sugar.

Stay away from foods that say non fat and low fat. You want to eat real food in its natural state. There is nothing wrong with say, butter, yes it is a saturated fat but a little is ok like a teaspoon, just don’t eat too much of it.  You want to eat more of the essential fatty acids found in oily fish like, wild salmon, tuna, sardines and mackerel. Also nuts, seeds, avocados and olive oil. 

Beware of sugar whether it’s white or brown and definitely stay away from artificial sugar WHICH IS A BIG NO, NO!

Remember, eat food in its natural state.

One of our main goals is to reduce sugar. Having a special treat like your favourite ice cream once in a while is fine but try very hard to change a habit if you have one when it comes to consuming sweets.  If you are going to have a special treat make sure it’s when you really, really want it. Like if you’ve been thinking of something for about three days and you really want it. Now if you’re doing this 2-3 times a week then do not give in but, once or twice a month is fine. But remember, don’t over indulge, have a small amount and learn to become satisfied with just enough. In time, you will learn to enjoy and become completely satisfied with small amounts and you look forward to it even more.  If you haven’t already tried dark chocolate, this sweet is actually good for you. As long as your having no more than 2-4 small squares and that the dark chocolate is 70% and above.
Note: Dark chocolate contains a substance found in the plant world called, flavonoids. This substance has antioxidant and anti-inflammatory properties. 

Avoid milk chocolate that lists sugar as its first ingredient. 

I know being this disciplined might seem hard in the beginning but when you start on a journey to better health and a better quality of life with your legs its definitely worth making the changes. 

When it comes to managing Lipoedema with exercise, it's all about movement.

Move everyday!  Whether it’s going for a morning, afternoon, or evening walk, to walking up the escalator stairs instead of riding them!   Riding your bike, jumping on a trampoline, joining a dance class, or like me, after building up my fitness, endurance and interval running. Whatever it takes to get you moving.

Ideally, 4-5 days a week you need to challenge yourself, meaning, you need to get your muscles working to the point of working up a sweat. That’s when the real work begins! But I must stress, you need to make sure you are working within your healthy heart rate. So if you do not already have one, it’s essential that you invest in a heart monitor and when exercising, especially when doing cardiovascular exercise, make sure you are within your healthy limits.

Over the years, I was training on average; 5 days a week, now I’m averaging 4 days a week. I do a combination of functional weight training and anaerobic conditioning. I’ve been blessed with the ability to work with Bruce, my fitness trainer, all these years but, if you do not have the financial means, then seek out an experienced trainer at your local gym and ask for guidance. Even save up and work with the trainer for a few sessions and understand the basics. If you would rather not work with a trainer or do not belong to a gym, then purchase a book and educate your self on the right way to exercise. Unless you are doing the right kind of exercise, you will not reap the benefits, and the benefits are, from my own experience, a healthier me, and healthier legs.  

SO GET MOVING!!!!