Lymphoedema

Hi Purple girl 

I’m sorry to read this-have you had it diagnosed and been referred to a lymphoedema clinic for advice and help? I didn’t have it myself despite lymphnode  removal in my own surgery, but I know one of our ladies in the group has a lot of experience I’m sure she’ll be happy to share with you.

I’ll tag her and hopefully she’ll come along with some advice for you. Her name is Beth2 

Sarah xx

Hi I had a total pelvic exentaration may 2024 and had my lymph nodes removed. My legs sometimes swell and my right leg feels numb and I get pains in my legs as well as back ache 

Hi Purple Girl,

Yes, I developed lymphoedema after my radical hysterectomy. I get a swollen right ankle. My left one is puffy but not too bad. Warm weather seems to make mine worse so I only really suffer with it over Spring and Summer. It can be worse at night. No pain for me, just uncomfortable stretched skin.

I asked my GP to refer me to the Lymphoedema clinic. They did some checks and measurements and confirmed it. I was given compression stockings which do help me. Treating it as soon as possible is best to help prevent it from progressing. 

I hope you can get some help and relief soonx

Hi Purple girl 

I had a radical hysterectomy with lymph node removal in February 2025 (actually, a year ago yesterday!). I have swelling in my left leg and pain in my left knee (which I assume is either caused by or made worse by the swelling). I’m being monitored by my consultant at my three-monthly checkups so I haven’t had a referral to a lymphoedema clinic or an actual lymphoedema diagnosis so far. The consultant said that they’ll refer me if it gets worse.

I’m self-managing the swelling on the advice of my consultant by keeping active (lots of walking, gym and pilates) to keep everything moving, putting my leg up/avoiding standing for long periods as much as possible (which I find frustrating when it stops me from getting on with my normal life) and wearing compression socks/tights on bad days (I don’t have the proper fitted ones you get from the lymphoedema clinic, I was just advised to buy widely-available standard ones online)

The self-management is relatively successful for me, which is why I haven’t been referred to a lymphoedema clinic. My left leg and ankle in particular are always mildly swollen and feel heavy compared to the right side; the self-management things I’ve listed above have helped to reduce the number of days with worse-than-mild swelling. I had one day over Christmas where the swelling went down completely so my two legs/ankles looked the same which was like an extra surprise present to remind me what my normal legs/ankles used to look like and I was so happy, but this only lasted for one day unfortunately - I remain hopeful that I’ll see my non-swollen matching legs again sometime! 

I hope that you get some help for your lymphoedema and pain soon if you haven’t already.

Louise x

Hi Purple girl

Bit of a late repy I'm afraid as I haven't visited this forum for some time.  I hope you're OK?

I developed lymphoedema shortly after my treatment finished.  Lymphoedema is progressive to a greater or lesser degree and, imo and as May2 says, it's best to seek treatment asap - ideally at a lymphoedema clinic. 

I was fairly unlucky in that, although my swelling seemed fairly innocuous in the beginning, within 18 months one entire leg + foot had irreversible swelling !  I'm pleased that I pushed for a clinic referral early on because I was able to get timely treatment when my swelling started to get out of control; it turned out I needed a custom made compression thigh length stocking + toe cap to control it!

If you haven't done so already I would ask your GP for a referral to a lympoedema clinic.  In the meantime there are a few things things you can do to help yourself as outlined in the Lymphoedema Support Network article 'just diagnosed':  www.lymphoedema.org/.../