PLND RECOVERY TIME

Hi JWO,

I had lymph nodes taken out around my womb, can't remember exactly how many, but when she drew the diagram to explain it to me it seemed a lot! I was Stage 1A grade 2. I can't remember being numb there, but was definitely numb around my bladder. I couldn't feel a thing, and had to time myself for loo trips for about 3 weeks.

I felt very weird for a couple of weeks. I went for a walk and only got a few yards away before I felt as if my stomach might drop off! It gradually got better the further I walked each day. I'd had shingles some years earlier, so when I had tingling sensations I knew it was nerve endings knitting together. That lasted for about 6 months, but gradually got less.

If I felt too much pain I just got my feet up and rested. My consultant said I would regain my fitness after 3 months, so I took it carefully until then. It seemed to work in the end OK!! Were you issued with any instructions on discharge? I was given a little booklet which gave me an idea about how much exercise I should do. xxxxx

Thanks NannyAnny - so it sounds like a slow recovery. I wondered. It feels like nerves have been disturbed as you say. I had a booklet about recovery from hysterectomy, and that is going very well. But it doesn’t say anything about the PLND, which is where the lingering pains are. How long since your surgery and do you still have any discomfort? Take care x 

Hi JWO,

I will be 4 years in August. I very, very occasionally have the nerve niggles, but having had shingles I don't worry about that, and its usually when I've done a lot. To be honest I never thought about PLND, and had to look up what that was!!!

We went away in our motorhome when I was 3 weeks post op. I walked in the mornings, but got the feet up in the afternoons, and left hubby to it!!! Bending was still an issue then as my pans are stored in a drawer at feet level! I think the 3 month target for fitness was about right. Don't forget its a big operation, even with keyhole surgery. After the three month mark, when I was more active, my left ankle began to swell at night. I asked 4 different people about it and nobody seemed concerned. I thought it may be lymphoedema starting, but my doctor said it wasn't bad. Its down by morning, but I watch it!!

If you are worried, ask your CNS. I was back to hospital after being out two days. I had a lot of issues with the bladder not working, then over working, but they said it was all settling down, which it was!!! xxxx

Hello

i had 18 pelvic lymph nodes removed at the time of my hysterectomy, which was at the start of December 2020.  Before the surgery I was told they might have to take them if they were enlarged, and that I would then be at high risk of lymphoedema.  I was told after surgery that they’d been removed ( thankfully all 18 were clear), but was not given any further information.  I still get twinges in my pelvis, but haven’t had any real pain or numbness.  I hope yours eases very soon, but it might be worth talking to your GP or CNS  - they’re very good at offering reassurance!

Pippa xxx

Thanks for the reminder about 3 months! I am in a hurry to get out working in the garden. More patience needed I guess. It sounds like you made a great recovery. Well done you. I hope it stays that way for you.

Thanks Pippa, it’s good to hear of others’ experiences. I’m glad to hear your lymph nodes were all clear. Mine were too thankfully. High risk of lymphoedema sounds a bit concerning. My surgeon said I was very low risk, but I do think they play things down. Were you given any advice on how to minimize the risk? 

Hello again

I’m so glad your lymph nodes were clear too - what a relief.  I wasn’t given any advice at all on how to minimize the risk, but have since done a bit of research and there is a really good booklet on this Macmillan website called Understanding Lymphoedema, which you can download.  It has a section on reducing your risk, which I found very helpful.  Basically the main risk factors seem to be being overweight, which thankfully I’m not, and not being very active.  Advice is to keep to a healthy weight, exercise etc.  Also to be very careful not to get infections in your legs, so if you have a cut or anything, to clean it immediately and use antiseptic creams.  They advise shaving using an electric razor, so less risk of cutting yourself etc - and getting antibiotics more quickly than you otherwise might if you get a leg infection!!  

Phew!  There are so many things to think about aren’t they?  I’m sure we’ll all worry less as time goes on though - at least, I hope we will!!!

Pippa xx

Hi JWO,

I was the same about the garden. In fact I remember weeding it kneeling down in week 2!!! Couldn't bend!!That seemed like a major step at the time. It was August, though!!!! My lymph nodes were all clear xxx