Lipoedema restricts me in so many ways I don't know how to cope?

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.

13 Replies

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  • 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.

  • 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.

  • 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.

  • 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?

  • hola por favor escriban en español ,tengo un problema en la pierna izquierda la tengo muy inchada y lo que me dijeron los medicos es que tengo un linfedema nivel 3 por favor ayudenme. estos los medicamentos que me mandaron ampicilina mas sulbactam y benzetacil de 1200 yciprofloxa. aydenme porfavorrrrrrrrrrrrrrrrrrrr

  • 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.