Lipoedema in both legs, very severe. I work full time and have a 7 year old and a 1 year old. I'm constantly shattered, my legs ache and I've now got fallen arches under my feet - very painful. I hate this illness. I buy wide trousers but when I'm walking ppl can see my horrific ankles it's so embarrassing. I take my kids for swimming lessons and I dream about going in the pool with them but I'm too ashamed. My legs are killing any bit of self respect and dignity that I have left. If colleagues walk to meetings I have to drive, I'm becoming increasingly immobile and every step with my ankles on display is leaving me less and less confident. I love my kids but I hate my life. Some days I dream I'm normal then I wake up and the freakshow starts again.....no treatment available for me on nhs and can't afford private.
Lipoedema restricts me in so many ways I don'... - Lipoedema UK
Lipoedema restricts me in so many ways I don't know how to cope?
Aw Huni. I know exactly how you feel, I was diagnosed about 7 weeks ago, and I am still waiting to see if I can have help, it is very frustrating, and I too have felt like giving up, it is my entire left leg, and this was through the treatment that I received for cervical cancer. No one tells you that this may happen, saying that what is the alternative.
I am finding it very difficult to find footwear, I have always wore beautiful heeled shoes or boots, and now this seems to be a thing of the past for me, and if you knew me, you would know just how badly this has effected me.
You don't say where you live, but there should be some sort of help for you, and if not on the NHS then you shoild be subsidised to help pay private costs.
I really hope that you find the answers that you are looking for, and that you manage to stay strong. xxxx
I have been reading about Lipoedema and have had chunky legs from puberty now 50 and my legs are terrible I am going to the doctor as so depressed, my left leg swells all the time and my legs are really bad. Will go to the Doctor and talk about being tested for lipoedema I am in such pain with them especially my knees. I wear Fitflops all the time they are the most comfortable and still are pretty hope wearing these shoes will help. Love Viv x x x
I used to wear fitflops too in a very busy retail 6 day a week environment. Eventually my legs but particularly my right leg became so painful around the ankle area. I ended up getting a full knee replacement on the right leg and the surgeon told me the left leg could have surgery 8 weeks later (I wimped out of getting my left leg done) because
a) i wanted to strenghten the right leg first
b) i wanted to make sure it has worked on the right leg first
18months on the right ankle is still painful and the lipodema is more severe in the right leg and i have no feeling on the right knee area due to nerve damage
I have howeverhad some relief by not wearing fitflops all the time as the surgeon said they make the feet unstable and were designed to only be worn 2 hours a day
I've found some sandels andnshoes on-line from companies specialising in wider feet these are good and worth the money as i can walk pretty comfortably.
Your post resonates with me. I too have partial numbness due to nerve damage and painful knee swelling. The over hang around my ankles is like a mushroom top. I can only wear crocs at the moment but i have washable Velcro slippers that i had to purchase after falling and breaking ankle bones and ripping my akilies tendons. Has any one else got a problem with falling. I have bruised toes from bending when they are swollen. Cosy feet shoe company cater for my needs but unless i am wearing thin wide socks i can't wear the Velcro slippers. I wear full length skirts to hide my legs. Wishing you well.
Good morning. There is no test that tells you that you have Lipoedema. You can tell by the shape of you legs and arms. Go onto Lipoedema UK website where you can find lots of info and advice on the condition. 😉
Yes there is a test they do to check for this Illness as I myself had it done. It is all to do with measurements etc plus people with lipoedema don’t get in thier feet or hands x. Yes it is painful but I bought myself those swim dresses and swim a few times a week and I would highly recommend as it helps me a lot
I empathise - it took 40 years to get my diagnosis; my symptoms started to become evident after I had my tonsils out at the age of 5. I wear compression stockings and have a lovely Lymphoedema nurse (who diagnosed my Lipoedema) but even with treatment I am still ashamed of and disgusted by my legs - my husband is helping me to feel a little better about myself, though. Still when my nurse suggests I go swimming, or to exercise in water, I tell her that it is out of the question - I just can't face the stares, sniggers and whispered comments. I more-or-less live in maxi skirts, occasionally trousers, and am now in constant pain from the Lipolymphoedema and Arthritis in my knees and spine. I don't want to give you the impression that everything is doom and gloom, though - I still have my life, my husband, children and grandchildren. Regarding treatment options: you might have to start by Googling Lymphoedema clinics in your area which take NHS patients, then go to your GP armed with that information. It is completely wrong for you to be diagnosed and then just left in limbo - I was initially diagnosed with Lymphoedema and it took an OTs leter to my GP to get a referral to the Lymphoedema clinic, so perhaps you could try that avenue (Occupational Therapists are usually found on the County Council's website). Hope the info. is of use to you and good luck 
I have have found it very difficult to get my head around this diagnosis, can you explain what treatment options are available? My Lymphoedema nurse has provided me with surgical stockings but tells me that this is all that's available to me unless I can afford private treatment. I understand there is a referral process to St Georges, London? I also googled a german doctor who performs liposuction for this but nurse said it will more than likely come back in an uneven, lumpy result. Sorry to gatecrash your post.
Hi Lissylou are you on Facebook? If so search Talk Lipoedema Private Chat and My Journal and Global Lipoedema Experiences. The results from the German doctors are amazing and a lot cheaper than the 2 private doctors in UK - Anne Dancey in Birmingham and Dr Karri in Hull. I just wish I could afford it.
I feel for you, I feel the same, some days all you can think of is how ugly your legs look and how you can cover them today! I too love swimming,I used to pay a fortune to go to a quiet club, but it got too expensive, just remember you kids love you no matter how you look, we have to focus on the positives
Saw on TLC Dr.Nowzaren dealing with a woman 657 pounds and severe lipedema. He is a doctor in Huston, Texas. Does surgery for severely obese. Good luck.
Thank you so much for your post. I saw 2 episodes of my 600 pound life on TLC. dr now appeared to have little knowledge of lipoedema and suggested that she still had large legs and needed to lose more weight. i could have cried. i went to see a surgeon for bariatric treatment privately. the reason there is only a 5% success rate is because weight and fluid return in many cases. It takes a lot to maintain the bodies weight loss. I had a gastric band and had to have it removed. I always blamed myself for being big but people note i don't eat big portions and don't graze or eat in between meals.They are doing tests on patients that have regain after surgery to find out why this happens. It is still in its infancy regarding knowledge. There are psychological aspects as well as physical ones to consider. I hope i have not offended you with my reply. I'm considering options. Many thanks
There are several options to help.
MLD is Manual Lymphatic Drainage. Usually available by private Therapist. Ask at your Lymphoedema Clinic. or go to MLDUK where you will find a list of area's and addresses of Qualified Therapists. You certainly need to be taught a Simple Lymphatic Drainage, (SLD) you can do yourself. This special massage is feather light, and helps point the fluid that collects under the skin in Lipoedema, towards the Lymphatic Ducts, and excretion via the Venous system. It helps keep the various ducts open and Lymph flowing. Lymphatic Fluid has no pump to help it on it's way like the Blood system, it relies on movement. So keeping mobile is the best therapy.
To begin MLD it's best to have a session at least every 2 weeks. But be guided by the MLD therapist. She will gauge how best to start. Once the fluid is on the move, you will probably find you need to keep visiting the bathroom. But your legs will feel better!
If there is a greater swelling in the legs, a course of CDT (Combined Decongestive Therapy) May be of use. This can be a course of 4 layer tight bandaging. to squeeze the fluids out. It may last from between 2 to 6 weeks, depending on what you need. (Usual is 4) The cost of this can be petitioned for NHS funding. It can take a while if granted. This is combined with MLD, skin care and dietary advice, in the NHS Policy Guidelines.
Liposuction is not usually available on the NHS due to cost, and there is only 1 surgeon currently doing this for Lipoedema. But it is not an impossiblity. (A new clinic is being funded in Hull..)
It can take months for the total benefit to be shown in Liposuction, as the bruising and swelling has to subside. There are no guarantee's either, that the pain will be less, and the Lipoedema won't return. There is no cure. Compression stockings must still be worn following this procedure.
Dry Brushing is of benefit too. Similar to SLD, and is easy to self perform. Many video's are available on youtube.
Swimming is very good to help. there are long swimming leggings available. If you cannot face the baths why not try the sea? T shirt and leggings? Go for it! You can save some older stockings for use while swimming..
There are in the region of 3.1 million in the UK with Lipoedema with varying degree's of it. Several stages and types. So they stare? My mobility is worth more!
Furthermore, find a group on a Social Media site. There are plenty to search..
Good Luck!
Thank you for all the constructive and practical advice do you know the name of the new unit in Hull by any chance?
Search for Mr Vasu Karri, he's the surgeon in Hull. He did my legs five days ago in Goole hospital but he's opening his own clinic next week - called The Karri Clinic, in Willerby.
How are you getting on after your surgery?
The Karri Clinic Mr Karri is the surgeon there. He is a lovely man and will understand you
Hi I am considering getting the liposuction could you please let me know how much the cost was? Thanks
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I know exactly how you are feeling. Pain constantly, embarrassed all the time, low self esteem, and if it wasn't for your child, you probably wouldn't go out much at all.
Trying to sleep I also find painful, as my legs are so fat,it hurts my knees.
I have just found out that there is a name for us with fat legs, I have been saying all my life, that there is something wrong and nobody believed me!
If you have any advice I would appreciate it, thanks. Sorry for your pain, and discomfort that your in everyday. I am in the same boat as you.
Hi
It took a severe lymphoedema blister forming and breaking down to be considered for a hospital bed. I am on a waiting list for a reclyner chair through an o.t service. I have stage 4 lipoedema. The blister is still being dressed 3 times a week and won't stop leeking fluid. Once it clears up i will go swimming but ill have to use a walker to get me to the pool area and back. I am at that stage of heat and discomfort of swelling while sleeping. I sleep with a fan on. I also can't have a quilt on my legs. I am relieved to find it is not me but a medical condition that i have. I had compression stocking before but now i can't put them on myself. Its a severe condition but more drs and nurses are aware of this condition. My chiropodist has knowledge of this condition as does one nurse that changes my dressings. This is day 1 on this site and i feel blessed to have found all the people here. I pray it is caught before a dvt happens. Wishing you well.
I found you tube videos showing how to apply Farrow wraps to the knee and thigh Farrow wraps.
youtube.com/watch?v=wu9xv_e... is for thigh wraps.
youtube.com/watch?v=kAAjqR-... is for wraps to the knee.
This should be helpful!
Since my last post I have been finding out as much as I can about lipodema/lymphedema and started a Keto diet in April and wearing sports compression. This is just two things to try in the armoury of things that will help. My pain which used to keep me awake at night has subsided, the swelling has gone down in my legs and I have more energy. Try it, cut out sugar (low fat stuff contains carbs and sugar) bread, grains, flour, red wine instead have avacado, bacon, butter, cream, nuts, green leafy vegetables, meat, water. And get decent compression leggings I got mine from TLC Sports they are brilliant and comfortable so much so I feel undressed without them! Have a look at groups on Facebook for info and inspiration like lipodema warriors and Keto for lipodema. Oh and I've lost 5kg (that's one stone!) X x x
Hi could you give me more info on this please. What to do, where to go, abd keto? I am in my late 50 's. I feel nobody ever listened to me all my life and now I am trying anything. I have so maby things going wrong with my body now that my legs etc are further down my list of illnesses that i have. I just want to give up Now!
Please if you can inspire me or give me hope i would really appreciate it, thankyou.
Hi there, I’m currently switching to keto. Haven’t started yet but it’s been a process getting my pantry in order for it. After decades of various restrictive diets I have a lot of resistance to keto. it’s more challenging as a vegetarian but also How many other diets promised to be the one thing that will do what all other diets couldn’t ???! Also if it didn’t work for me I’d have lost that one bit of hope
Many people with Lipoedema claim great results with keto, though none claim it’s a cure. Still losing half of the body weight and some reduction in the legs is hopeful to me. At least, I am in enough pain I’m willing to try it for 3-6 months to see if it helps.
My advice is to spend time googling keto shopping lists to see what you might like and what could fit your current life routines. If you cook or bake there are many recipes (I am not good at these things sadly).
I am by no means an expert the info is just fresh because I’ve spent the last month or so reading everyday about it. 1- under 20g net carbs (subtract fiber from carbs to get net). 2- more fat than protein. 3- grass fed butter is your new best friend I guess. 4-consider psyllium supplements for digestive ease and omega 3 supps if your keto diet is lacking fish or walnuts
So in my beginning keto pantry I’m ending up with a lot of macadamia nuts, walnuts, almond butter, cauliflower, green bell peppers, celery, cucumbers, grass fed butter, bunch of cheeses. I know I’ll miss cereal and milk so I’m going to try slicing nuts and making some kind of keto granola to eat with heavy whipping cream. And have a bar of ultra dark chocolate on hand for a treat. And hopefully expand from there
This is a hard illness to live with and you have all my empathy.
I find tragic that we are actually hard working, disciplined women, either very active or itching for activity. Swimming is one of the very best things we can do to help managing this condition. I swim and I totally get how you feel. I have a couple of suggestions that come from my own experience. There are alternatives to standard swimming costumes. I never use a regular swimming costume at the pool, I use a full leg sharkskin for several reasons. I swim at speed and a regular costume don't keep my breasts safely tucked in. I can put it on at home, so I don't need to waste time and energy getting ready at the pool, I put a t shirt on, my trainers and I am good to go. My legs are covered and the material, which is very thin and strong, makes them feel snug and smoother. It also allows you to wear a sports bra underneath Look out for a swimming pool with private changing booths. Another good options are full leg length garments for classic dancers, make sure they are made of lycra, as cotton absorbs too much water. Check online. I like a place called Dance direct. Once in the water, no one can actually see your legs, so, if that helps at first, wrap yourself in a robe or a big thin towel between the showers and the swimming pool edge. You will drop this step soon, I promise! The point here is for you to get into the water. I can assure you that once you start, you won't look back. Treat yourself with kindness. Although it doesn't touch the issue of lipoedema, I found the documentary "Hungry for change" immensely inspiring, specially Jon Gabriel's intervention. I am also convinced that Mother Nature (or in our case, Stepmother Nature) creates these genetic traits for a reason and if they stay is because they are important for the survival of our specie. I suspect that we, ladies, belong to a very special race of women that have been put on this planet to be able to go through successful pregnancies in times of famine and deliver healthy babies and still be able to nurse them and keep them alive. I don't know about you, but I find that thought comforting.
Hi, Lady, how is lipoedema "important for the survival of our specie"?
Also, if "we belong to a very special race of women that have been put on this planet to be able to go through successful pregnancies in times of famine and deliver healthy babies and still be able to nurse them and keep them alive" where does that leave women like me, who never had children? Useless pointless wastes of space?
Good morning. I have had Lipoedema and now lymphoedema on my arms legs and tummy all my life. I go toMount Vernon Hospital in Hertfordshire. I have been given support garments and I have been referred to St George’s in London where I hope to get liposuction done on the NHS. It’s been a hard fight but I will not give in until Doctors understand this horrible condition. Have a look at Lipoedema UK there is lots of advice and understanding. Also contact all the hospitals in you area to see if they have a Lipoedema clinic. If you would like to talk please let me know. 😊
Hi. Just came across your post. I know it's a few years ago now, but I too have the dreaded L. I was just wondering if you have managed to resolve any of your issues and are feeling any better? 🌷🌷🌷
I am a working in hospital and I am on my feel all day long. I had gotten to the point that I could barely walk at the end of the day. I would have to go home and prop my feet up for the rest of the night. orthofeet shoes have really helped with my heel pain, and I am able to be active after work again. I Love My Shoes! I tell my shoes EVERYDAY how much I love them.
