Kidney pain 2 years after removal - nerve damage, not infection

Hi Busybee 

I'm Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

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Hiya busybee...I am lucky and have no pain pre op. However pain is very wearing, I have fibromyalgia so live with constant pain. Are u still in contact with your cancer team? They deal will lots of post op patients so try ringing ur teams nurse who may be able to put ur mind at rest and give advice. Pee sticks can be bought on line so u can check that yourself and if you think u have infection u can then contact ur GP. Pain also can be worse when ur worrying about it. I myself worry if my fibro pain flares up especially now I have cancer. But I check with my nursing team and if I am told all is well I try and settle to do some breathing exercise just like we were taught when giving birth and it does help a little. I know this maybe not much help but just to let u know ur not alone hugs

Thankyou so much for reply my doctor as put me on nerve tablets possible nerve damage but radiotherapy want a ct scan doing so waiting on that well wishes sent to you x

Best wishes to u too. If u need a shoulder or a virtual hug just reach out...it's a great forum full of love and good tips. Hoping u have a more comfortable day today..hugs

Hi, I'm 7 months post full nephrectomy. Tumour removed along with left kidney. I had been ok but the past month I've been getting a full continual ache , pulls, area sensitive to touch, tender...   not too sure why it's started now 

Hi, I had a right kidney tumour ablation in July 2023, initially I had nerve danage to my thigh and hip straight away then a few days post op I couldn't lift my right leg up higher than say a few feet without getting a terrible pain up my back to the kidney area. This subsided however I am left now with horrendous pain in the right flank area and have been to my gp several times who referred me to the pain clinic and for physio as they didn't know what could be causing this. I spoke to my consultant who did the priceedure (radiologist) who said he's never heard of this before and just said to go to my gp if it persists. I am currently on nortriptaline and it doesn't seem to be helping with the daily pain. The pain isn't present when I wake up although the nerve danage in my thigh is there constantly, but once I've started moving around I get a stabbing pain in my right flank rib area which then turns into a horrible ache and the only thing that stops it is resting. I'm at my wits end and feel so depressed with it as I'm getting no relief and just want my life back where I'm pain free for just a few days would be nice. I'm going to work still but I'm struggling each day. I've been told it's possibly nerve danage however I'm not getting any straight answers and my gp has tried but doesn't really know what to do with me.

Has anybody had ablation and experienced this? How did you get relief from the pain?

I feel for everybody who is struggling and I pray we all get some relief and answers as its just demoralising going through a cancer diagnosis then surgery only to be left in chronic pain.

That sounds horrendous, Tesion!  I haven't had ablation so cannot help but sharing experiences, but it doesn't seem right to me that you should still be having so much pain.

If the nortriptaline is not working, could you ask your GP to review this and maybe try something else? It doesn't seem to make sense that you are taking medication that isn't working, as there must surely be other things that they can try.

I hope you can get some relief soon. You are doing well to even be able to work, when in constant pain. 

Hiya Tesion. Nice to meet u. I haven't had ablation so I can't comment on that.

Pain...it's an odd one pain..it can arise when it wants, where it wants and the more we worry the worse it can get. 

I can give lots of examples, I have fibromyalgia,  but I won't bore u with it all. Let's see if we can come up with suggestions instead.

Your ablation etc is upper most in your mind so obviously u feel the pain may be from this. However, there is alot going on on your right flank. For example your liver.

I have nonalcoholic fatty liver. This is a pest because it aches frequently and the pain makes me feel nauseous..there is no meds that help. it is worse after eating certain foods....also silly as it may sound trapped wind can be unbearably painful and some of my new meds make me windy and gurgle in my tummy

I think what i am saying is think ourside the box. The pain may be something else and not from your ghost kidney. 

Boring as it sounds, see if there are foods that make it worse, see if tiredness makes it worse..are your bowel movements the same.

Just a few thoughts to play with...

I hope you are having a more comfortable day

Hugs

I think I have. If I run my fingers over my right side of my abdomen I can feel everything, if I run my fingers over the area I was operated on 10 months ago (21/6/24) full kidney removal it dull. Can't feel things as much as normal side. So I think we all must have some nerve damage to the point it's either nerve feelings return or  they don't! I'm not too sure. I am sorry your having to go through this 2 years post op, I hope that you get some answers. What does your report say on CT scan!?