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Severe pain due to kidney stent

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Earlybird
Earlybird

Id be grateful for some advice please. I have had a JJ stent in place for the last 3 weeks after an operation for stone fragmentation failed due to a narrowing of the tube near to the stone. I was due to go back in to have the procedure done again today.. but the surgery has been cancelled. During the past 3 weeks of hell I have had so much pain...like being stabbed constantly with a knife in the vaginal area. I initially was sent home on a Friday late afternoon and told to take Ibuprofen and Paracetamol. An hour after I got home I was doubled up in pain ..was given codeine. Since Ive had this done Ive visited/spoken by phone to my GP 5 times and have visited A+E once. I now have dihydrocodeine and paracetamol and diclofenac suppositories. The suppositories work ok, they take the edge off but relief doesnt last long. The urologist I saw at A+E last week wasnt sympathetic. He gave me a scan and stent placement is fine and he gave me further suppository .. and sent me home. He could see how much pain I was in but as my next operation was booked for today he wasnt concerned. Im now awaiting a further operation appointment. I dont know how long it will be. I had to go to the preassessment clinic on Wednesday and was there some 5 hours. Due to the pain I was vomitting for over an hour before I could leave to get my lift home. Im just persevering with the pain relief I have at present but I cant work..Ive been off for 3 weeks...I can barely stand at some points during the day, Im not sleeping hardly at all, I throw up with the pain and Im relying on others to shop and cook etc ..its totally debilitating and urology know this. Does anyone have any experience of this? Are there any other medications I could request to try? Any suggestions would be greatfully received. Shirley

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  • allen_1272
    allen_1272 Earlybird

    Edited

    HI Earlybird, I’m sorry to hear about your pain and suffering during your bout of kidney stones. I am going through a very similar experience to you. I had stents fitted on my birthday back in October, some 6 weeks now and finally my date for my operation has arrived. I have been in pain since day one and it has got progressively worse with pure blood in my urine at times and a multitude of clots. I too have been to hospital and spoken to doctors on numerous occasions but told it was normal with stents and to wait for my planned operation. I’ve lost a new job I started a week before I suffered my current bout of kidney stones and can’t work due to pain and blood. The medication you have is the same I was given, were you given Tamsulosin, a muscle relaxer for urinary tracts? It may be worth getting some from your GP. I hope you get something sorted soon 
    • Earlybird
      Earlybird allen_1272

      Posted

      Many thanks for your response Allen. Ill try the GP again. Ive never been one to complain and always thought my pain threshold was quite high until now. I cant imagine enduring 6 weeks of this hell hope your operation goes well and youre soon pain free x
    • hadel52668
      hadel52668 allen_1272

      Posted

      Heya, just jumping in to this... do you find the Tamulsion helps??  I haven't seen much difference!! Good luck with everything!! X

  • hadel52668
    hadel52668 Earlybird

    Edited

    I feel your pain. I have honestly been there. My advice. Ring your consultants secretary. I did, daily for a week. It's definitely the stent giving you all the pain, discomfort and sickness. I literally begged them to remove it. They eventually did. Turns out, my body was trying to reject it. Moan and nag!! Keep us updated. Best wishes xxxx

    • Earlybird
      Earlybird hadel52668

      Edited

      Many thanks for your response. I had a call from the booking office yesterday afternoon..the date Ive been booked for is 22nd December..another 4 weeks away. I was distraught..I know the poor girl on the other end of the line is just doing her job but she got a lot more than she bargained for during that call..I cried constantly. Ive spoken to a few people who have recommend I make a complaint but your suggestion seems a sensible starting point in the process. Thank you Hadel52668
  • hadel52668
    hadel52668 Earlybird

    Edited

    Thankfully it did work for me... I waited 1 week instead of 5... however, because it was a "rush" job... it was done with minimal pain relief. My advice.., sit on your hands. I'm glad I did... as I honestly think I would have punched him!! Lol

    Seriously... keep nagging, moaning, crying and good luck x

  • Earlybird
    Earlybird

    Edited

    Hey all. Had my stone fragmented and removed yesterday leaving me with a further stent out that will be removed by the consultant on Christmas Day. The operation went fine and achieved its goal. Im still in some kidney area discomfort but nothing like the pain of previous weeks from the previous God awful stent. Mind you, Ive had this one less than 24 hrs and have three times sat on the string attached from the stent to my leg n almost passed out in pain but, in in all honesty, I dont care how much pulling the damn thing out hurts on Monday as long as its out!!. Im hoping then that will be the final part of that epic episode and the further scans im having for my raised calcium levels will determine if i have hyperparathyroidism which is likely to have been the cause of the stone in the first place n that can be sorted if thats the case and life will return to some sembelance of order. Happy Christmas to you all Shirley x
  • michelle76038
    michelle76038 Earlybird

    Posted

    Hi!!!! How are you doing? I hope you are doing well. 

    I am wearing this horrible stent.  This is my second stent and like you said it feels like a thousand knives stabbing you in your vagina. It feels like horrible period cramps. I am on the Depo Shot because I have horrible PMS and horrible abdominal pain, and back pain. It feels like everything is burning in my urinary tract!!!!

    I am so sorry you couldn't work because of the tremendous pain. I like you I don't want to do the dishes and or anything.

  • michelle76038
    michelle76038 Earlybird

    Edited

    If you have vomiting you can ask for Zofran or Phenergan. They both help tremendously. The last time I was in the ER and the doctor wanted to just give me pain pills but I told him they weren't working. He gave me IV Dilaudid for the pain and IV Zofran and IV Benadryl.  I think he gave me the Zofran and then the Dilaudid and Benadryl together.

    If you have any more issues please tell your ER doctor and your urologist you need something stronger for the pain and to give you Zofran or Phenergan for nausea. They are both wonderful for nausea. I am not a doctor but I have had these medications many times. 

    You could buy Benadryl over the counter and it may help you with the nausea.

    I know this was posted 2 months ago. I hope you feel better. I wish they made comfortable stents. Then we wouldn't have to worry about the pain and nausea. 

    Take care and please feel free to send me a message.

  • lisa0811
    lisa0811 Earlybird

    Posted

    I feel your pain😫, I've had mine in for 5 months now and I can tell you it's been the worst 5 months. The unbearable pain along with the infections it has caused me! I can happily say that it will be removed tomorrow🙌. Hopefully I'll wake up after my surgery and be told that that was the last of my stent. 

  • heather75649
    heather75649 Earlybird

    Edited

    First I’d like to thank the writers of these articles for taking the time to share their experiences of living with a stent. Although I wouldn’t wish the insertion of a stent on anyone it does help to know that you are not alone and that the symptoms experienced  are ‘normal’

    As a retired nurse i was naturally very interested in reading all I could find on the placement of stents and what I should expect post operatively but nothing written by the so called academics prepared me for the reality. Mild discomfort utter rubbish! 

    ‘’My experience has been very similar to all the unfortunates who have  gone through this procedure with scalding frequency, urgency and incontinence not to mention bladder spasms and back pain. None of the medication I have been prescribed has made much difference and I find the best relieve for me is to use as hot as you can stand wheat bag (similar to a hot water bottle) placed on your groin will really relieves  the frequency  sensations 

    Has anyone else found anything that helps 

  • DavidFS
    DavidFS Earlybird

    Edited

    I had a 6 millimeter Stone and they put a stent in two days ago and I am still having terrible stabbing pain in my back. And the doctor said I should be able to go right back to work and I haven't been able to because of this terrible pain. I have to take pain medicine therefore I can't drive. He said he will be able to take it out in a week but I'm still missing work .

    • teresa37539
      teresa37539 DavidFS

      Edited

      Hi David,

      I am going through this exact thing. I have a 6mm that is trying to pass and a 4mm waiting in the wings. Last Sun I went to the ER for the 2nd time for this and was admitted. On Monday they put a JJ Stent in and sent me home Tuesday. I'm scheduled for a lot on the 27th, but on top of the pain from the stent I am also having a lot of pain from the stone. I assume it's theb cause it's the same place and I am peeing blood. I am miseravle! I am making those around me miserable. I have Percocet to take, but it's not helping. I also have a chronic bladder disease. Like I said I have gone to the ER 2 times and right now with the Opiate Crisis I'm afraid all they see is someone looking to get high. Plus, I HATE wasting time. But it's getting so hard. Has any of this helped you?

  • wendy34909
    wendy34909 Earlybird

    Posted

    I had outpatient surgery yesterday for a mum stone I could not pass. Now have stent in place and am in constant pain...

    I had hyperparathyroidism 34 years ago and all glands were removed. I now have the opposite condition which means I take calcium and vitamin S daily...my calcium is below normal and I am still making kidney stones. I hope they get you sorted out soon. God bless.

  • kate03789
    kate03789 Earlybird

    Posted

    I am also dealing with the painful stent. Had a bladder biopsy last Wednesday. Tried to go back to work this morning. Not happening. I wish doctors understood that for some, the pain of a stent is just unbearable.
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