Kidney Stone HELL

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Hi I am a 34 yr old female who first had kidney stones at 19.

For the last 4 year I have been admitted to hospital every year with moving or blocking stones.

Last month I had an 11ml stone blockage so had a stent fitted, this is my second stent but this one is nothing like the first which was bad enough,  I am in daily agony mainly at my pee hole I can barley walk cos of the pain and when I do it’s horrendous I end up soaked in sweat & am always bleeding afterwards.

Something is definitely not right.

I have had it in 5 weeks been back to my doctors every week since & to my consultant who refuses to remove it without even scanning me to see if something is up.

No one seems to be listening so I have a private scan booked for 4 days time but not sure if I will make it to then as the pain is so bad.

I am taking pain relief but nothing touches it. I has got me on the bottom, never suffered with depression but pretty sure I have it after weeks of living in this nightmare.

Has anyone experienced anything like this? 

Thanks in advance 

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19 Replies

  • Posted

    Also I had a stone stuck in my pee hole for weeks last year that I eventually passed, this feels almost like that but is it even possible with the stent in? TIA
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  • Posted

    Sounds familiar!!! I do not get on with stents. My consultant said it's my body trying to reject them. I had 2 removed after visiting my local AE department and getting admitted. Like you, I felt no it was listening. AE was my last resort. Having the stent was actually worse than the kidney problems!! My advice... go to AE as soon as. X

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    • Posted

      Thanks for your reply, I am new to forums, All I seem to do now is google for advice.

      I am on holiday at the moment, which has been ruined by this stupid stent ??

      The last one was nothing like this I could lead a half normal.

      When I wee I have tears streaming down my face off my eyes watering with pain, the only relief I get is lying down which is hard with 3 children under 10 & school runs to do (I dont drive) and my partner is at work.

      I have ANOTHER app at the doctors tomorrow when I get home, not that it does much good.

      I am getting to the point of going to AE I ring the ward I was on for advice all the time also & they just say its normal.

      I am not due to get it out until the 18th of December, the thought of living like this for another 7 weeks is horrifying 😦 xx

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  • Posted

    Hi

    I'm sorry to hear about your awful time, the issues kidney stones cause!!

    It sounds like you should change doctors first off. That's ridiculous, they won't even scan you even though you are in debilitating pain? Unbelievable. Second, I know it's difficult but try to get to your appointment in a few days, it's really important so they can check what is going on in your body.. Even if it's just for a few hours, you can do it. You don't get good care unless you pay for it these days.

    I just had litho for my stone, it's my first one and it worked thank god, but awful pain after! Can your doctor give you something stronger because if they don't, that's tantamount to torture.

    I hope it gets sorted soon, I really feel for you, my lovely. MAKE those doctors treat you properly, you have to work the system and just keep pushing pushing pushing.

    Good luck x

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    • Posted

      Hi, thanks for your reply 😀

       I am back at my doctors tomorrow, I am definitely going to push it, I am already trying but getting nowhere, All I get told is it is normal, but there is nothing normal about this!

      I have a high pain tolerance anyway, have no choice with with stones, but this is something else so uncomfortable & no pain killers work.

      When I got the stent fitted I was meant to start litho treatment while the stent is in but as yet I still have not getting an appointment & last time I had it for a 7ml stone it took 3 sessions & this one is 11 so I am thinking it will take more, also really dreading that it was not pleasant last time, not at all!

      Fed up is a understatement.

      Was that your first stone? I thought I was dying when I had my first, I didnt know what was happening xx 

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    • Posted

      Yes it was my first stone. I stupidly thought the litho would be a little painful, um no. Thought my kidney was in fire after all day. Fell asleep later that day, woke up and pain was completely gone, so weird. I think my body was in shock straight after.

      I'm 28 and first stone, just the one too so quite lucky compared to others like you. I didn't have any symptoms for nearly five months, just blood in pee then a month ago start getting groin and abdominal pain, horrible. Glad it's better now, even if they blasted 3mm off the stone, that makes it small enough at 4mm to pass.

      Your stent does sound like the wrong size tbh.. They either need to adapt it or just take it out and try something else. They sound incredibly painful to have in, a friend of mine did and said they are horrendous to pee through...

      Best wishes!!! X

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  • Posted

    Hello  

    You know your body better than anyone.   You Said and I quote this.

    " I am in daily agony mainly at my pee hole I can barley walk cos of the pain and when I do it’s horrendous I end up soaked in sweat & am always bleeding afterwards. "      Something is definitely not right.

    Please go to AE.  Sounds like that stent is not the "right size" for your body.  They should not just leave the stent in for prolonged periods of time. Stones/crystals  can attach to the stent.  Daily agony, Pain, and bleeding >>>

    You need to be checked out ASAP.  I would be demanding that something be done.  Pain medication isn't even

    helping you right now. So, Please, go to the AE,  ASAP!!  Change consultants too!  Best Wishes, Hope you

    get taken care of soon.   

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    • Posted

      Hi thabks for reply, Yes I am going to go & be seen.

      I have been using Chanca Piedra (stone breaker) for the past month along with lots of lemon water, so I am praying it has worked & stones are smaller or even gone would be better.

      3 months is such a long time to have stent in I speak to others & they only have theres in a matter of weeks.

      Thanks for advice x 

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  • Posted

    Definitely go to AE... I had to, twice. I've actually refused stents now. Too much!! I was booked in for Plyoplasty in June. Was cancelled. Major operation. Unfortunately my kidneys are joined ( horseshoe) and I have about 30 blood vessels from main Aorta cross crossed over the kidney. Roughly 9 hours of surgery. He's RELUCTANT ... which makes me hesitant!!! I'm seeing him every 3 months at the moment. IF pain becomes unbearable, I may have the stent tried once more. He's offered it... but I just remember all the pain!!

    Get some help!!!

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    • Posted

      hello Hadel  

      I think you should contact sarah87162  from this forum in Kidney Stones.

      Her post was 12 days ago with the title Appointment with consultnt.

      I think You and Sarah87162  could share information as she also has horseshoe kidneys.

      I am concerned because you said that your surgeon is RELUCTANT.

      I really hope that Sarah could give you the name of another Surgeon.

      Best wishes to You Hadel  

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  • Posted

    My consultant is very reluctant to do the operation, as the blood vessels are incasing the kidney. I've said that all the time in managing the pain I will agree to that... but in the last : years, I've ended up in hospital both in November and March. Each time very poorly. As it's a horseshoe, the operation can only be done as open surgery. It just seems that every time I have a scan, something new pops up. I have a PUJ obstruction in a horseshoe kidney. I will look for that post!! Thanks 😀

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    • Posted

      Not sure where you live but I do understand the frustration of surgeons not being willing to operate.

      I finally saw my 5th consultant in Bristol last week and he did agree to operate and try and remove the kidney stones from my horseshoe kidney.

      Because I live in Wales, I had to get funding from my local health board to be treated in England.

      If you are interested I can give you the name of the consultant I saw and maybe you could get your doctor to refer you to him?

      It's all very well if you are not in too much pain at the moment but my experience with this is you never know when that awful pain is going to come back.

      Take care and keep in touch

      Sarah

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  • Posted

    Poor you.

    Hope you manage to get to your appointment.

    Surely they cannot just leave you like this?

    Do keep in touch

    Praying for you.

    Sarah xx

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  • Posted

    I am very sorry you are going through this. I am currently dealing with a 3mm stone and the pain is very bad. The nausea makes the whole thing worse. I can't even imagine having such big stones! The one I have is bad enough! You poor lass. I too have been using chanca pledra. Not sure it's helping. I also am very frustrated with the medical people in my area. I will be wishing you good luck!

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  • Posted

    Has an infection been ruled out?
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    • Posted

      They give me antibiotics when I have an infection but because I have a kidney stone infection keeps returning. I tried suppressive antibiotics last year but they did not work infection still came back.
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    • Posted

      Wow....they really need to get you in for that surgery! I know that your doctor(s) are reluctant to do the operation, but it sounds like leaving it alone is becoming just as risky. Keeping you in my thoughts........

      Derek

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