Lymphodoema

Hi Ladies,
I was recently diagnosed with lymphodoema in both legs, following RH and chemorad for 1b1 cc. The consultant told me I was high risk because of the combined treatments, but it still came as a surprise as my legs look exactly the same. I am also quite petite, so it is not obvious at all. I was referred to the clinic after my ankles swelled last summer going to Turkey. Although mild, I have been given firm support tights with pretty high levels of compression, which I now have to wear every day. I’m trying to keep things in perspective here but they are really uncomfortable and make me feel so old and unattractive. Sex has been problematic since the treatment, late 2014, and this just compounds the feelings. I’d be interested to hear from others with the diagnosis who might be happy to share, either how you feel and any practical tips you might have.
Thanks

Hi Rachel,

I know exactly how you feel! I was diagnosed with the same about 5 months after my RH, and it feels like just yet another annoying reminder of what we've been through!

Although i have it in both legs, it is worse in the right tham the left. Luckliy though  i only have it in lower legs so i'm currently able to get away with just weariing the below the knee compression socks. Hasn't been too bad thought the winter, thick tights and boots hide them nicely, but really not sure how i'm going to cope come the summer ( which luckily is very brief in Scotland where i live!).

What i find most frustraing is that nothing really stops the swelling, even with the sexy scoks on. If i sit, they swell, if i go for long walks they swell...last week i made the misktake of standing ironing for 3 hours and my ankle was literally twice the size!!! The only thing that helps me is to lie with them rasied way above my head, but thats not so practical, especially at work.

So like you Rachel, if anyone has any good tips i'd be glad to hear them too. I guess the good thing is that as we've both caught it in time that we should be able to manage it and stop it getting worse!

Love Greta x

Hi Rachel and Greta!

I've got mild lymphoedema in both legs - mostly in the upper thighs. I didn't find the tights too bad (I have black ones) but wonder how keen I'll be to wear them in the summer! Sadly, I can't get them on at the moment because I have such bad sciatic pain. I can't get my socks on easily so there's no way I could hoik the tights on. 

My lymph nurse gave me MLD and it made a real difference. After that I was more consistent at doing the SLD. I asked the nurse if I should do it in the morning or evening and she said both if possible. For a time, I was doing it at least once a day. It was almost like a meditation and I was really pleased with myself. However, she did tell me I shouldn't do it if I was feeling generally unwell and I've got a bit out of the habit because I just seem to have had a bug for the longest time. I do notice my thighs are looking a bit funny at the moment so I'm looking forward to getting back to it. I'm trying to nip it in the bud.

Kirsty xx 

Hi Greta and Kirsty,

Thanks for your replies, it's good to connect with you both. 

I know I have to persevere with this as I have no option, but because its mild, it's hard to realise the  importance of doing the routine every day. I find the tights quite tight around the waist so they are ordering some stockings for me to try.....lace tops to make you feel more feminine!!! Will just have to see how they are and how it feels in the summer. Thanks again, and good luck to you both.xx

Liking the sound of lace topped stockings!!

The only option I get from NHS Scotland is black, white and those hideous tan ones. Had a quick look online and there do seem to be more "trendy" colours and patterns,  but not sure about buying stuff online re the compression/sizing etc. 

Have a lovely weekend ladies x

Hi Rachel, 

I've not been diagnosed with Lypmhedema but they are keeping a close eye on me and have also given me some tights to wear. I have found them quite comfortable but rathered annoyed as just they have a ladder in them and I only got them last thursday! 
I haven't really had much swelling in either leg but one leg is slightly bigger then the other. I was just wondering what you could tell me about how it feels? I get an awful aching pain in my thigh, and my legs are often feel tired after doing something like walking up the stairs. I also get an odd sensation like my leg doesn't really belong to me at times? 
Sorry for high jacking your post, but interested to know if this could be the start of lymphedema or just my legs settling down after surgery? 

Hi Samip, only just read your post. Thanks for responding. I actually have no odd sensations in my legs at all, and would never have thought that I had the condition had it not been for swollen ankles after flying. My thighs might be a tad larger, but then I have put weight back on after the treatment. I am trying to get into good habits by doing my lymphatic drainage each morning before I get up, then a few exercises, then the dilator and finally shower! Yes it all takes a while. I'm looking forward to getting these stockings they have ordered to see if they are an improvement. Not sure what your achy legs might be, but it could all be early signs. After my RH there has been some nerve damage to my thighs, so I can't feel much anyway. Hope it improves for you though, and it's good to keep on top of the issue as it can get a lot worse.