Hi, I have lymphoedema in my left leg and genitals following surgery for cervical cancer and lymph node removal. I have also had LVA microsurgery which unfortunately does not seem to have helped. My leg is increasingly swelling and doesn’t reduce. I have tried so many different compression tights but they don’t reduce swelling or even maintain it. I have been wearing them all day and the comfiwave at night. Has anyone tried non medical compression leggings instead of the tights? I am a bit at my wits end as I feel I am working really hard to do everything right and it still gets worse. I actually think the tights may be making it worse than normal exercise leggings even though I am stage 2 lymphoedema. Does anyone have any suggestions for good leggings I can try? Thank you 🙏🏻
compression not working!: Hi, I have lymphoedema in my... - LSN
compression not working!
I'm so sorry to hear that you are having increasing swelling and that you feel the compression tights are making things worse.Are you under the care of a lymphoedema clinic, and if so is your therapist ordering these tights for you to try? If so, I would go back and explain the problem. It could be that you need made to measure tights which your therapist can measure you for and order for you.
I'm not sure that non medical compression would be the right way to go for you. I tried some that I bought from Amazon when I was first diagnosed and while I was waiting to be seen by a trained therapist, but they weren't effective for me. At least I didn't waste much money on them, as they are much cheaper than medical grade compression.
I don't know if you are aware but there are 2 types of compression, circular knit and flat knit. Flat knit are more effective than circular knit in some cases, but they have to be prescribed by a professional and measured correctly.
If you are not under a clinic at the moment, I would get a gp referral to one. I'm sure you are aware of the various organisations that can offer support and guidance including the Lymphoedema Support Network (LSN).
Thank you so much for your reply. I have been waiting nearly 2 years for my NHS lymphoedema appointment so have paid privately a couple of times and have been prescribed Haddenham class 2 tights. I have also bought my own Juzo tights and tried lots of others but they all create an increase somewhere 😳. I have never tried the flat knit so perhaps I will ask about that when my appointment comes around in May. It’s a struggle to know what to wear in the meantime though - I’m going to work wearing compression tights all day and it gets worse and then when I come home and swap to other non medical compression leggings it eases a bit. Maybe that’s due to me puttting my legs up so who knows. It’s so difficult to spend the entire day having this stress going on in the background. Thank you for your advice, much appreciated 😊.
It is so sad that you have had to wait this length of time to see someone on the NHS. I really sympathise. I had the same problem, and went privately a few times. I assume your private therapist measured you for the tights, as that is essential, even for off the shelf tights. You can get a list of lymphoedema therapists from the website MLDuk. These therapists have been properly trained.
Also, I hope that you have been getting your tights on prescription through your gp. You are entitled to 2 pairs a year. My private therapist was able to prescribe them for me and sent the prescription direct to the gp.
You mention that changinng out of your medical compression and raising your legs might be helping, and you, and raising your legs will help.
However, properly fitting compression is normally worn from when you get up until when you go to bed, and should feel comfortable.
Everyone with lymphoedema is different, and once you get seen in may, hopefully they will get it under control for you.
I have the same problems as you but I were class three expert strong stockings they keep my leg soft but maintain it. I also wear a class too expert on a but my left leg is so much Than right because I the same surgery as you because of cervical cancer exactly the same, but I will try wearing class three stockings during the day and class two on the night time I hope this helps but the only way to help my leg is to keep off my feet but sometimes that’s very impossible I’ve been told by the lymphaemia specialist my leg is the weight of two toddlers. It gets me so down sometimes because there’s nothing else I can do. But yes, I know my leg is big very big but the hope my information helps.
Hi, I second what Croqgirl has said.
I started with off the shelf round knit stockings but my lymphoedema continued to get worse. My lymphoedema clinic nurse then prescribed me made to measure flat knit stockings which was a game changer. After 2 or 3 goes to get the measurements right my swelling stabilised and has barely changed since - about 5 years now.
In my experience, apart from wearing compression daily, it helps to follow all the other usual advice to manage lymphoedema: skin care, weight management, regular exercise, healthy diet and lymphatic drainage massage. Elevating the affected leg(s) whenever possible also helps.
Thank you so much for the reply. I will do my best until my appointment in May and then ask for the flat knit tights to try. Is it possible to order them myself through patient choice or somewhere? (I realise I will have to pay) Are they much more difficult to get on and do you find them hot in the warmer months? Sorry for so many questions but do you wear them if you’re exercising too or just take a break and wear gym stuff for that time? Thank you for your time 🙏🏻
Hi,
Sorry to hear things are not going well. I echo what others have said and speak to your therapist but I would think non medical leggings wont help.
What tights do you have? Many have little or no compression in the body, I have very similar symptoms and have tights with full compression to the waist which proved transformative.
We are all different but I have managed to stay with circular knit and now have made to measure but top up my 2 pairs on prescription with off the shelf garments.
Sigvaris Bodyform are CCL2 to the waist and Haddenham offer full compression to the waist from their made to order range. Medi also offer a medium compression brief option with the Plus and I think Elegance range, not sure what class that is but it is definitely compressive.
I certainly found with full compression to the waist really worked, hopefully your therapist will be able to offer further guidance, and as others have said sizing is imperative, too tight somewhere on the leg could cause swelling. Good luck and I hope you make some progress soon.
You need a prescription for flat knit compression, usually from a lymphoedema specialist, because they are 'tailor made' specially for you using precise (to the millimetre) measurements.I also use Patient Choice. My nurse sends my measurement form to Patient Choice and then I can simply phone them to make an order. If I need extra stockings (beyond my NHS quota) it's the same process only I would need to pay.
Flat knit compression is stiffer, less stretchy and thicker than the round knit which is why it is more effective at controlling swelling. I wasn't keen at first and thought I'd find it difficult to transition from round knit. However once I realised how much better they worked for me any disadvantages were soon forgotten. I don't find my flat stocking knit stocking difficult to put on as long as I use a foot slippy and rubber gloves. It needs a bit more of a tug over the foot, and to get the proper stretch up the leg, than my round knit but I soon got used to it.
I personally don't find them more of a problem than round knit in hot weather. The flat knit fabric has a more open weave than round knit which I think helps with heat regulation.
I wear my stocking all day every day including for exercise - except swimming. I rarely take a break because I can't bear the feeling of my leg getting more swollen, which it does immediately I stand without compression.
Flat knit are made to measure so there is no way you can do it yourself. They are generally easier to get on than circular knits. A good pair of rubbery gardening gloves helps with donning stockings. You are entitled to new hosiery every six months on the NHS, 2 pairs of whatever you are fitted with. If you pay for prescriptions it is useful to buy an annual prescription certificate, but hospital issued garments are not chargeable (where I worked at least). Sometimes it takes a few goes to get the fit right and can be expensive if your therapist has to ask the GP to prescribe several times. It’s a minefield and varies across the country, but shouldn’t.
For the genital oedema some patients find it helpful to have firm underwear and wear a pad to give extra compression. Leonisa uk do a post partum pant that has a wrap front piece, but I am sure you could find pants in modern firm materials on the high street. Suggestions only. You may be more comfortable waiting for your appointment. Swimming or walking in the water may give you some relief.
Wishing you the best and a satisfactory outcome.
Compression tights
Sigvaris Compression Stockings
Just wondering if anyone is aware of any decent sport compression available for full leg?
