Pain 1 year post nephrectomy - anyone else?

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Hi there,

Looking for some advice please.

I had a nephrectomy in April 2023 after they found a 17cm by 16cm by 11cm stage 3 tumour attached to my left kidney. At the same time they also discovered i had severe endometriosis which had damaged the tubes connecting my right kidney and my bladder and I got a 24cm stent inserted to help the kidney drain. I have since had this changed under general anesthetic 3 times and have been advised i will need this to continue for life.

My question is about pain. I have constant lower back pain on my left if i sit for any length of time, making it hard to do my desk job. The pain can sometimes take my breath away. It goes all the way up my back on the left hand side. I was prescribed naproxen by the gp but advised against taking this by my urologist due to damaging the kidney. I also get pain down the left hand side of the front of my stomach..like it is super tight and sore to touch. This and the constant need to pee with the stent mean i struggle to get rest at night.

I use a hot water bottle LOTS and do stretching exercises to try to release it but no matter what i do it is there daily.

I wondered if others had pain like this......it's so hard to describe. The physio thought it was referred pain from the right kidney on the right hand side but it's gone on so long now.

They suspect my tumour was there growing for over 10 years and i know i had a large haematoma intially after it was removed but nothing has shown up as alarming in any scans so i wondered if it was maybe nerve damage or something like that and if anyone else had had anything similar and had some pointers on how to deal with it.

Thanks in advance Slight smile

  • Hello, I am Sorry to hear that you're in pain. Slightly similar in regards to pain. 
    Like yourself I've also had my left kidney removed on 21/6. One of my friends is a physio, he's advised me now I'm 5 weeks in to start my stretching exercises... that way scar tissue inside does not attach itself to other organs internally. 
    My left side feels extremely tight but with an odd numbness too!! When I wash around my incisions it's like I can see I'm washing but can't feel it.. but only in a certain area above the kidney removal site which is approximately 6 inches. Very odd. I was taken naproxen as I have a slipped disc and have suffered with long standing lower back /coccyx pain for over 15years.. unfortunately now I've had to stop that also! So I manage on paracetamol and if the pain is intense then I have to deal with it... tramadol and codeine make me constipated. I want to cry some days!! 
    I now wonder if the my pain other  than slipped disc pain had something to do with my kidney, like referred pain? I don't know... I'm not back at work yet , but that will be the test when sitting for 9hrs. 

  • Thanks for replying. How handy to have a friend who is a physio. I really wish i had this advice a year ago just after my surgery. I literally had no pain for about 6 months on this side and then wham it started. I really hope your recovery goes well. Take it easy and dont try to do too much, especially when you go back to work. I have a standing desk which might be something you want to look into.....it moves up and down so i can sit at it too when i get tired but just gives lots of options. I am lucky in that i work from home and can take breaks and walk about/stretch when i need to. I just wish i could get a handle on the pain - i never really had much pain even with the tumour and the severe endometriosis but this is just so frustrating that i cant get it resolved. 

  • How would you describe your pain?  

    ok, thanks for the advice regarding the desk. How long did you have off work after your nephrectomy? 

  • My pain is there pretty much all the time in my back on the left hand side when i sit down :( I was off for 4 months but this was due to dealing with the new bladder stent i needed and having that changed after 3 months cause it was too big and had slipped, and with the endometriosis. Take care of yourself x

  • How are you doing? X 

  • i am 6 years in and am in constant chronic pain , all over the top half of my body. If i lay still it calms but as soon as i move the pain starts and builds the more i move. On opiods , which help , but neither Nhs or Pain Services are doing anything to help.

  • Do you still have appointments with your oncologist? Maybe contact your CNS nurses? They might be able to see you!?