compression not working!

[Granolasometimes]

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 🙏🏻

[Croqgirl]

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).

[Granolasometimes in reply to Croqgirl]

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 😊.

[Croqgirl in reply to Granolasometimes]

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.