I first noticed and became self conscious when I was 12 years old. Other peers at school and my friends didn’t have legs like mine and didn’t get very sore in the inner thighs. Then as the years went by my legs and hips grew larger and began to be painful. Mum told me they were growing pains and I would grow out of the pain and the rest of me would catch up with my legs ! 
I longed to be a nurse and a midwife and at my interview for a student nurse place Matron said she would give me a six month trial as she felt I wouldn’t cope with the pace of the job. I proved her wrong and became a qualified nurse and won the best nurse medal. I then went on to train as a midwife and that became my profession over the next 40 years. 
During this period I met and married my husband and had two beautiful boys. Constantly during my career and pregnancies doctors treated me as “ obese” even though my upper body was “ normal” whatever normal is. I could paper my walls with diet sheets. One doctor gave me a food diary and when I took it back he barely glanced at it. Just asked what I really eat. !! 
As I got older and near retirement my legs grew and grew so I could barely walk. I retired at age 64 as I then couldn’t cope with the pace. 
Moving to Great Yarmouth my GP asked if I’d ever been treated for my “ Lymphoedema “ and referred me to the local Lymphoedema clinic. There I was immediately diagnosed with lipolymphoedema,the Lymphoedema being caused by lipoedema fat squeezing the lymph vessels. 
Being diagnosed released me from the feeling of guilt I had for 60 years but also gave me a feeling of anger that I had been let down by the medical profession. Lipoedema has been known since the 1940s but has never been given any importance and  liposuction is treated as cosmetic. 
I am now almost 78 and lipoedema has taken away my mobility and as now I have cancer too has taken away my ability to have an anaesthetic for the surgery I want to rid me of the cancer. I am a wheelchair user because of lipoedema. 
I write my story to spread awareness of this horrible disease so that , hopefully, in the future women will be able to go through their  lives without stigma, without pain and to keep there mobility to enjoy their lives not be hating every painful step they take. 

My name was "Tree Trunk Legs" at School

Called Names .jpg

“Tree trunk legs” that was my nick name from around age 13 just when you want to be like your peers! Knee socks that would never stay up and longing for a pair of wellies that would actually fit my legs. Years roll by and my legs get bigger and all I can do now is cover them up! Beaches and swimming pools became  a nightmare, maxi dresses became a godsend! Pregnancies made midwives gasp with horror at my swollen legs and lectures came about over eating which actually I never did Mrs Midwife!! 

30’s, 40’s and 50’s ever wider trousers and maxi dresses, a lot more pain and swelling - sure I was just fat and frumpy! 

I was 60 last week and my legs are now very troublesome but... 12 months ago I saw on fb that there were others just like me! My GP was kindly but without a clue and after many hints at my losing weight she eventually referred me to a vascular surgeon to see why I bruised so much. He took a look and said the words “you have lipoedema” you need compression . I was sent to the local hospice to be measured and a lovely nurse patiently measured inch by inch my incredibly sore tree trunk legs . Compression cane and went I could not bear them and now I rely on snag support tights to provide some hold. 

Where I am now is more comfortable knowing I have this although my GP still doesn’t get it! Knowing all you guys are behind my story and tell similar stories of your own is enormously helpful and I have been delighted to read your courageous words. So thank you all it makes it more bearable! 

The diagnosis was bittersweet

Pool Benidorm .jpg

From an early age my legs were an issue from not being able to wear Derry boots or wellies. To attending hospital for ex-rays to see what was causing me pain.
I've always carried more weight than my peers. Although I was fit I couldn't run as always felt weighted down. 
I danced though I loved dancing and was probably fitter than most in my class, yes they'd beat me at the 100  200 meters or hurdles but I would outlast everyone of them on the dance floor. From the first beat to the last I was strutting my stuff...

6 years ago I was finally diagnosed. 
Like many other before me, I was told it was weight and I had to loose it to get better. I was put on diet after diet. I'd loose 2 stone then plateau. But after each loss I would gain back what I'd lost plus more.
I weigh 25 stone wear size 28 to 30 clothes, but I know why now.
The diagnosis was bittersweet.
It was YES, I can prove I've not been lying all these years. Then the realisation that nothing can cure you.

I've seen Mr. Munnoch, was fantastic meeting someone who looked at me and saw my condition. I was late stage 3 then and on the cusp of him being able to help. Despite me trying my hardest menopause put paid to me being able to get the surgery on the NHS as I've advanced and that's with wearing compressions and low carb WOE.

I manage as best I can, I'm late stage 4 lip/lymphedema. I'm trying to stay mobile and have adaptations made to the house and we are future proofing for wheelchair use.

But despite all of that.  
I live life to the fullest. 
I have a full time job.
I help out with Talk Lipoedema 
supporting others.
Love my holidays to Benidorm. No one looks at you there, you are accepted for who you are. I don my tankini and take a dip in the apartment pool use the spa and get about by mobility aids. If anyone asks I'm happy to explain. 
I have 2 daughters and  4 grandkids. They keep me busy.
A loving supportive husband he is amazing the calm I need. 
Life is good .
The lipoedema is a big part of me, has been for as long as I can remember I'm 51 and hope to have a lot more time left to live and enjoy my wonderful life.

I’m not Fat !

I am not fat !

I am not fat !

When I hit puberty I noticed that weight had become a bit of an issue, being at school I didn’t take much notice, I was useto being called the fat kid,  no matter how hard I tried I just could not lose weight. 

Going into the working world from the age of 16 I noticed that I still couldn’t change. No matter what diet I did, how healthy I ate I was getting bigger from the waist down not smaller. 

I battled with the doctors for many years who kept fobbing me off with water tablets.

By 2017 I could not taken the swollen legs, the blue toes, and the pain any longer so back to the doctors I went, a nursing practitioner referred me to the Lipoedema clinic, where I was assessed and told the news that I have lipoedema. 

Being told at the age of 30 that I had this chronic disease really knocked the stuffing out of me! 

To be told my body will never change from the waist down came as a bit of shock. But also answered a lot of questions I had asked myself over the years! I just thought I was FAT! 

I now wear compression tights/knee highs everyday. I am in pain from the minute I open my eyes to when I go to bed. Some days my legs are so swollen I don’t want to move. My body physically sometimes does not allow me to do much. Mentally I battle everyday, even the lipoedema clinic admitted last time I went they can’t tell or do much more for me as they don’t know enough about this themselves ! 

I have no idea what the future holds for me and at the moment I am more fortunate then some people who suffer with the same as me! Knowing this may take my mobility scares me! 

I know I have the best Mom & Dad who support me and my friends are just amazing and they help me through this on a daily basis. 

They recognise the struggle I have most days. 

So please remember if nothing else I’M NOT FAT! 

I looked "normal"

I used to be Normal .jpg

I look back to a photo I had taken as a child, I must have been about 8 and I looked 'normal'.  By the time I was at high school I was large...I remember having to go to Evans to buy school skirts, hating PE (and the changing rooms), hating swimming and being called thunder thighs/tree trunk legs.  It was then I created this larger than life persona that reduced the comments but I still didn’t like the person I was.  

My first uniformed job meant I was squeezing myself into trousers that didn’t fit & I just felt uncomfortable...then there was my first bank uniform in size massive - a pleated skirt which added to the bulk.  I would go to the gym, watch what I ate but very little made a difference.  I was my ex at this point and his family would make comments about my size, my diet, my exercise.  Why do people think they have a right? 

In the run up to my 30's I went for it at weight watchers.  I lost 2.5 stone but nothing off those legs.  They seemed to be getting bigger so I lived most of my life in baggy dark trousers with pretty tops - let's hide those legs.  I focused on work, there I felt in control, fairly successful until my final 'proper job' as I describe it.  I didn't fit in, I was continually being given 'support' to lose weight and exercise. There was one person in this company who truly got me and we are still friends to this day.  I left this company not feeling like I was enough (those childhood beliefs that never left me) and I decided I didn't want to live like that.  

From there I went self employed in 2012, keeping the wall up to most people so no one could get in and make me feel bad.  This also went for relationships...I'm currently 'celebrating' 10yrs of being single.  Not how I wanted life but it saves the pain.  Work-wise it has been the best decision - generally I love what I do (sometimes could do without the excessive travelling due to the pain and swelling it brings).  

And that brings me to my diagnosis.  It must have been summer of 2014 or 2015 I was helping at a holiday club.  By now I had somewhat established an acceptance/loathing relationship with my legs and I sometimes would break into cropped trousers.  A lovely lady remarked that I may have Lipoedema as she had it.  She told me I would have to fight and she was right! I came home and googled Lipoedema - starring back at me were photos of legs that could have been mine and my mum felt the same.  

Off I went to the doctor armed with information. I was advised that 'you don't have lymphedema dear' and I was promptly referred to Counter Weight (NHS Forth Valley weight management programme).  I was devastated but this was the top doctor in the surgery...if he didn’t believe me/understand then who would?  A few months passed and the lovely lady again asked me to go back and push.  This time I got a student doctor and I completely played her.  Advising that unless I was referred to a clinic I would keep blaming Lipoedema for my lack of weight loss and almost that they had to prove to me I didn't have it.  

In June 2016 I entered the clinic for the first time.   It was held in oncology and I felt such a fraud - just waiting to be found out.  Within 10mins of being in I had an initial diagnosis.  From there came the joy that this wasn't all my fault followed by the heartbreak of being uncertain how to improve things.  I joined Talk Lipoedema where the support was amazing.  I didn't feel alone with this.  I started my first set of compression that month and it was a hate / hate relationship.  

In November that year I asked to be referred to Mr Munnoch in Ninewells.  I wanted to go for information only.  I visited in January 2017 where I was advised to try the RAD diet, that compression was my friend and that I could be a candidate for surgery if funding could be agreed.  This blew my mind as there was a part of me that expected him to say I didn't have it and I was just overweight.  In March 2017 I decided to take on the funding battle and it was eventually approved in September 2017 bringing relief and fear.  During this time I was moved from the small clinic at the hospital to the full time clinic in the hospice and this was amazing.  The nurses there are full time, they understand it and have been so supportive since then.  

In April 2018 I had my first surgery on my right leg removing around 8ltr.  It was far more difficult than I expected.  I didn’t regret it but it was tough.  July 2018 saw my second surgery on my left leg where around 7ltr was removed.  This wasn't as bad as my first operation but still tough.  Within a week I started MLD which made a huge difference.  
Here I am in June 2019.  I'm so lucky to live in Scotland and manage to secure funding but liposuction hasn't made everything OK. I am chunkier in other bits; I still have overhangs in my ankles; naked I look like a cooked and cooled chicken drumstick.  I battle compression daily but it is now my friend.  

Dressed- my legs look better but the mind monkeys are still in my head.  I await a third OP for my bottom but it requires so weight loss first. 

I never told my family how hard life was !

I was always a very chunky child, the biggest in the classroom. My younger sister was a tiny little thing and when my brother arrived, he was also a normal sized child.  I was always very fit, we played out all the time, I loved riding my bike, We had a new sports centre open, and during the holidays and weekends I was always in the pool, I did gymnastics at school and after school I went to country dancing lessons.

When I hit puberty I seemed to gain about a stone each year.  My family made jokes about my shape, lack of boobs, small waist and my 'bum shelf'. A dietician was especially harsh when I was 17, and my Mum gave him a few choice words and we left, slamming the door behind us. 

My whole life has been about defending my eating, which I must admit, at times, was over the top and got me to where I am now..... super morbidly obese.   When I did try to diet, it was slow and ineffective, you name it, I have tried it.  I dread to tell you of some of them that originated back in the 70's. 

I never told my Family .jpg

I have struggled my whole life with self-esteem, and feeling not worthy.  Beating myself up about not having control.   I regularly had that phrase "oh, you have such a pretty face....."   sometimes followed by. ".... If only you could lose a bit of weight, you would be perfect!" 

I never told family/ people in general how hard life was, how much pain I was in.... I was afraid to complain as I feared the lectures about my weight and diet, I thought it was ALL MY OWN FAULT! 

Getting clothes and shoes to fit that looked nice were few and far between.  Luckily my mum was a self-taught dressmaker and made most of our clothes growing up.  Unfortunately she died when I was only 21 so didn't have time to pass her skills on to me.  I have done the best I can to look presentable, but I dont remember a time I actually felt amazing.  Shoes are a nightmare!  With such a large overhang at my ankles, even trainers come up too high at the back and dig in, which could be a point where cellulitis could start.  I customise my own shoes, just to give them a bit of bling.  But I generally have mens trainers (cut down at the back) for winter, and flipflops in the summer.  

I've always had some oedema at my ankles, I first noticed an ankle cuff  at age 25, I remember exactly where I was, what I was wearing and what I thought when I saw it. 

My legs suddenly changed and blew up in my mid 40's, literally over a 3 day period.  I kept going to the GP and saying,this is not normal, this is not what I usually have, when I put my feet up at night, this does not go away.  Her response was to get me on the program for gastric surgery, tell me to keep my legs up as much as possible and prescribe diuretic tablets!!!  I probably went 4 or 5 times in 6 months, saying that my legs were painful/tight/felt like an elastic sock that you cant take off. 

I gave up my business and moved home to be on one level, as stairs became harder to negotiate.  Then in November 2014 I saw a lady on This Morning talking about lipoedema.  I knew immediately that was it! I googled for a few weeks, joined TALK LIPOEDEMA on Facebook, printed loads of stuff, took it to my new GP and left it with her to read as she obviously had not heard of Lipoedema.  I arranged another appointment for 2 weeks later and she then asked what I would like done about it, as there seemed nothing that could be done.  I had to suggest that she refer me to a dermatologist or vascular consultant for a confirmed diagnosis.  I eventually got that diagnosis in late  February 2015 at age 52..... Only 40 years after onset at puberty!  

Since my diagnosis, it has given me the freedom in my own mind, not to care if people who don't know me judge, I don't have to explain it to them, I only have to be okay with it myself, and for the first time ever, I can say that I am.  I've been beating myself up for being unable to lose weight since I was taken to weightwatchers at 10 years old.  After years of avoiding some old friends who were keen to meet up, I took the plunge and have reacquainted with a few lovely understanding friends from my youth. 

I'm not embarrassed to ask for help now, even if I do think they judge me as 'that fat lady who can't do things cuz she's too fat'.  That's the narrative in my mind not theirs, and I brush it off and ask them anyway. 

I am in awe of my body and how it has supported me through my life, and I have promised to treat it better. I didn't take the gastric surgery route.  I've already lost a lot of weight since discovering low carb/zero carb , when I finally lose all normal fat, I will have a ton of skin that I won't be able to afford to get removed. On the plus side, my pain is now much better.  I have knee-high compression and arm sleeves (which I can’t get on by myself!) and I look after my diet. Thats the total sum of the treatment available for my stage 4/5 lipo/lymphedema. 

I am thankful for a few very close friends, I'm thankful that I am still mobile, I am thankful for finding all the lovely ladies at Talk Lipoedema.

Life is definitely better post diagnosis, as I am in a good place of acceptance, of me and my condition.

How to prevent falls with Lipoedema on ice and in snow

Brrrrr! It's cold out there!

Staying safe in cold and icy conditions is something we should consider and be prepared for in advance. We should give special thought to having safe footwear. BOOTS, our nemesis, are unavailable for the majority of us because of the girth of our calves and the ankle cuff. There is the option of the knitted boot which allows more stretch, but it is equally important to take into consideration the tread and grip they will have in the cold.

Ice Spikes or Grips

Ice Spikes or Grips

We all need dependable traction on icy days or if the snow finally arrives. Why not try ice spikes over trainers or shoes? These are adjustable and can fit over most flat footwear, there are even some specifically designed for heels. Searching for ice cleats/spikes online will bring up a plethora of options. Give yourself plenty of time to get to your destination; you should never rush in slippery conditions.

Walking at a slower pace and studying the best placement for each foot is sometimes a necessity. As we carry our weight in awkward areas, it can affect our balance, so try walking like a penguin to avoid a painful fall. The waddle will keep your centre of gravity over your front leg and help keep you upright. Spread your feet out a little to increase your centre of gravity and take smaller steps. Also, keep your hands out of your pockets, you need your arms and hands for balance. Remember not to put your arms out in case of a fall as it is easy to break bones doing this. Instead, use the tuck and roll option if you feel yourself falling, and try to land on a more fleshy part of your body. We have lots of fleshy parts, don't we ?

Walk like a penguin

Walk like a penguin

Finally, don't be embarrassed to use a stick or some kind of support, better to be safe than sorry. Take someone's arm and snuggle in, ideally make sure it's a friend or relative!!!

Does living with Lipoedema cause you to procrastinate in the Festive Season?

 Not everyone is a fan of list-making, but it is a well-known tool used by many successful people. A little aide mémoire for our busy lives. During the run up to Christmas, we expect many of you had a list on the go, trying not to forget the stuffing for the turkey, that last chocolate orange for Uncle George or cleaning the oven before the big day! When you are feeling tired and in pain, it is very easy to put things off until tomorrow, or leave everything to the very last minute. Then you get overwhelmed with too many things to think about and remember, it all seems more daunting than ever.

List-making doesn't have to be kept to Christmas or holiday-suitcase-packing. Writing a visual list of things you would like to achieve, however small, aids your memory and gives a sense of satisfaction as each item is ticked or crossed off.

At the end of the week you can look back and see that you did not while away your hours, those long procrastinated tasks are getting done, and less stress leads to a happier life. Pick one or two per day. If you don't feel up to it....don't do it, it's not compulsory and if you need help with something around the house don't be afraid to ask a relative, friend or neighbour. If you need a list for different things then do a couple, say, one for shopping, one for chores, and one for small DIY jobs. In this day and age there are many ways to keep a list. The old fashion notebook is still a favourite. Equally there are now note sections and reminders on phones and iPad’s . A to do list is a simple technique that can increase your productivity by 20 percent or more, if you don't use it already. It also has extra benefits of clearing your mind and saving you energy and stress. Try to spend 5-10 minutes each day on planning your activities with a daily to do list. Start your day with it or every evening write a plan for the next day, listing your daily things to do. Give it a try for the New Year and see if it helps.

Do something to raise awareness about our #bloominglegs this June.

June will be Lipoedema Awareness Month so we're asking asking all our friends and family to mobilise by getting green fingered and creating your very own floral display using old compression stockings!   Here's how to make your own set of blooming legs:

  1. Take a pair old compression stockings
  2. Insert plastic bin bag inside the leg.
  3. Tie toe area (If open toed) with a cable tie or string.
  4. Fill garments with compost packing tightly so the legs will stand upright.
  5. Cut holes through compression material and insert bedding plants, water well and allow to soak.

Come June you should an awesome pair of blooming legs that will form the centrepiece of our awareness month and thats when the real work begins.  Here's how you can use your blooming legs to grab attention! 

  1. Send images of your blooming legs along with a press release to your local media outlets!  A template press release is available to download here for you to share with your local media.
  2. Take to social media, update your profile pic and share images of your blooming legs using the hashtag #bloominglegs remember to tag us in @talklipoedema.  We've a £25.00 Amazon voucher for the best legs! 
  3. Have a blooming legs garden party to raise some much needed funds for us. 
  4. Not got time to plant something? Why not draw, knit, paint, sew, or stick flowers on your legs lol. Don't forget to share your creativity to raise awareness about our #bloominglegs this June.