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Permanent kidney stents

Hi ladies

Has anyone out there got permanent kidney stents and if so would love to know how you are coping with them. This Is my third lot and I am finding them quite painful. I have a permanent pain in my groin and a back ache. The pain gets worse if I walk for any length of time do other people find them uncomfortable. hs anyone got any tips to eleviate the discomfort . Would love some advice. After yet another restless night am feeling very low.

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Hi Maureen - Sorry to hear of the pain you are having. I'm afraid I don't have a solution but wanted to offer my sympathies and am interested if anyone else has advice as I am suffering too. Are kidney stents the same as urethal stents? I have a pair of these which need to be in place for three months following my massive surgery 4 weeks ago. My consultant described them as long plastic straws holding the urteters in place and they will come out after 3 months. I have had a lot of back pain and am not sure how much is these stents and how much is just the impact of the surgery as have a huge scar right up my middle from breast bone to joint. Also some people have said the epidural I was given before surgery can have back pain repercussions....My money is on the stents though. Were you given any advice? I don't find pain tablets seem to have an impact on the back pain. I walk each day and change position in bed a lot to try and keep it at bay. I also do some gentle yoga stretching which I think helps a little. Hopefully someone else will have some better advice but back pain really can get you down, I understand.

Wishing you all the best, Mary xxx

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Hi hope ur ok ive had stents in my kidney's since 2015 had 1 in each to start but now only 1 in right kidney now... ive bein told they will be in for life every morning i get up ive got lower backache once ive took couple ibuofen it goes.. sometimes the pain goes into my right legs.. have mine changed every 3mths.. xxxx

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Dear Tracy

Thank for for your reply I too had to have them changed every three months . I originally had just one and that was a bit more tolerable I know have to have two which will be for life my surgeon inserted metal ones last time as hey only need changing yearly and not every three months like the plastic ones. This at least cuts down on procedures . They are unpleasant blighters. My pain is in my back but the worse for me is the groin pain which feels like a trapped nerve .

It's hard enough fighting this awful disease without these awkward things causing extra pain but I suppose we have to remember without them our kid says would be in trouble

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thanks, Trace. I'm glad the ibuprofen helps. Perhaps I should try that. I'm on stronger pain killers (oxycodone) but I guess it depends what's casing the pain. I'm sorry this is for life for you. love Mary xxx

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Hi Mary,

Yes they are the same thing. For me my bladder hates them at first I kept going to the loo but that has now settled down . I do however have pain in my groin and a sore back . I think your back pain is probably the stents as I did not have any back pain from epidural but developed back pain after stents were inserted. Good news that yours will be removed mine have to stay in permanently due to scarring. It's nice to hear from someone who had them as I think they are quite rare. I find ibruprofen the only pain killer that eases it although it doesn't take all the pain away. Good luck with your recovery cxx

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Thanks, Maureen. Yes, I reckon my back pain is from the stents. I sure hope they come out in three months! That is what I was told anyway. Do you mind me asking, does it hurt to get them out? xx

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Hi Mary

No it doesn't hurt at all they put you to sleep.

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Oh good! Hope that's the case for me too! xx

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I had terrible back pain after surgery and was told it was normal.

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Speaking for wife. Prepping for endometrial chemo therapy (ClevelandClinic), first stent went in after kidney stone removed (at CC) .It was meant to keep ureter open in case of irritation during k.stone procedure.It had a string attached to allow self-removal after 4-5 days which she did.

About a month later after developing a UTI, local urologist placed ureter stents for both kidneys (said he had never had heard of self-removal stents).Chemo therapy had not started.

Pain in the lower abdomen area started with the 2-stent placement, along with blood in urine. Urologist assured both are typical symptoms of ureter stents.

It's been close to a year. They've been replace 3 times, about every 4months. Urologist said he used the most flexible ones available.

Stents have been a non-ending painful ordeal since day one. Today (Jan.2018), she is on a pain medication regimen consisting of both dilaudid and oxycontin (oxycodone extended release). Life has boiled down to painful waits for the next dose of pain med.

When asked about ever removing them, urologist laid out worst-case senario of developing life-threatening sepsis.

Local urologist group recently became a member of the U of M Medical dept of Urology.

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Jeez, Maureen. What you are going through sounds torturous. May I please ask why have have them? This is all new to me I'm afraid. I do wish I could wave a magic wand for everyone but I do send good karma your way - and Trace too - in the hope that your life with these awful things becomes more tolerable. Love and hugs xxxx

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Sorry to read you're in so much discomfort. Could you speak to the Urologist as they may not be sitting properly? I've got two permanent stents, one since July 2016, the other since November. These were to support my kidney function, particularly during chemo but had been told they will be permanent. Much better than alternative which is to have an external urine bag (nephrostomy). I had one for three months and had lots of problems with leaks. The stents were pretty uncomfortable for the first few months but I don't notice them any more. The bottom ends felt sharp and I felt pressure on my bladder. May be worth getting them checked as I'm pretty sure they shouldn't be permanently painful. If you're not confident in the response, you could ask for a second opinion. Sending you a big virtual hug and hoping you can get it sorted soon. love Jo 🌼🌻🌺🌷🌸

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Thanks Jo,

I have been back and had them checked out I think the pain is caused through the narrowing of my urethura which is badly scarred. So not a lot they can do I'm afraid but as you say better than the alternative

Maureen x

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I had a left ureter stent fitted at the same time as my initial biopsy in May 2016 as the tumour was pressing on the ureter and restricting urine flow. It is still there and has caused me no problems at all. It is still monitored with kidney function tests and scans which I have regularly anyway. I have now had an op but have been advised stent should stay in place while on Avastin therapy.

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Dear Jan

I am glad to hear that your stent does not cause you too much pain. I am wondering if mine does because I have two

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It has now been decided that I should have my stent replaced as I keep getting signs of a urinary infection but no symptoms - so my Avastin has been stopped meanwhile. I am somewhat apprehensive as several people seem to have problems with stents and this one has been fine so far.

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