Has anyone else experienced this?!?!

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I was diagnosed with my first kidney stone in Nov 16 at the age of 20.. I was told that it was only small and I could pass it by myself- when the pain settled I was discharged and sent home with pain relief... about 2 months later I started to feel a ‘tingle’ like sensation 24/7 in the bladder area which drove me crazy for months and months going back and forward to my GP being told I had no uti infections- was referred to a gynaecologist twice when finally after a year of misery in  Dec 17 they found the stone was lodged into my urethra and had manifested now making this 6mm. I had an urgent op the stone was lasered and I had a stent in for 10 days. 2 months into finally getting my life back on end of Feb 18. I got that awful pain was straight up the hospital to find I have another stone 6mm and I am awaiting another operation! 12 weeks if that between each other- I am again starting to notice the intense tingling feeling again- does anyone else experience this? It’s metally/emotionally draining and pain relief does not touch this feeling?? I feel alone with it all! Thanks in advance. 

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  • Posted

    Rest assured, you are not alone at all! Part of your experience is actually quite similar to my own. Back in October 2017, I had a stone that was 3mm causing me extreme pain and nausea. My doctor told me to drink tons of water and I would pass it on my own. I drank water for 3 weeks. 4 gallons in 3 days at one point. Nothing. Then the pain came back like a tidal wave! I laid on my bathroom floor for 16 hours straight dry heaving and in excruciating pain! Turns out, the stone was stuck at the distal junction(where the ureter meets the bladder)and had grown to 4-5mm. This opening is naturally more narrow, but I also had some scar tissue there from a kidney infection I had when I was 5. A week later, the stone was blasted and the scar tissue removed. I had a stent for 7 days. Now I get twinges of pain all the time in the exact spot where the first stone started to cause me pain. I don't know if I am forming a new stone or if I am having so-called "phantom pains", but I am terrified of going through that again. Did you change your diet? Are you consuming more water? Have you had a ct scan recently? I have met several people on here that produce stones rapidly and may have helpful information to share. I am sure some of them will comment on here.

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    • Posted

      Thanks so much for your reply! I had a CT scan 17th February with showed a 6mm stone in the left side at the end of the urethra. After my last op my urologist told me my urethra is narrow and it’s a problem for even the smallest stone to pass through so he thinks I may always needs an op. I have drank nothing but water since I was last in hospital on the 17th Feb and I aim to drink 3-4 litres a day. It’s very difficult but I have noticed it reduces the tingling sensation. I’m just worried that I will have the op again and within weeks get another one. I’ve reduced my salt intake also so fingers crossed that does help!
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  • Posted

    All I can say is I feel for you.

    After a year of having large kidney stones they were removed by keyhole surgery beginning of December 2017.

    I went to GP about 6 weeks ago and he thought stones were coming back but thankfully I think he is wrong about that. I had an update appointment  with consultant when we had all that snow so I could  not go. They cannot see me again till the end of May.!!

    Praying for you.

    Do take care and keep in touch

    Sarah

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    • Posted

      Hi thanks for your reply! 

      It’s such a nightmare- life becomes miserable with a stone- hopefully they can find a cancellation to see you sooner! Praying that they are wrong and you haven’t got another, Just glad to finally speak to people who are going through it too, I find if you haven’t had one yourself nobody seems to understand.

      Take care! 

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  • Posted

    Did they mention tamsulosin at all? It dilates the urethra to make passage easier.
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    • Posted

      Actually that’s a good point. yes they did, I was given that with the first stone I had a months course but wasn’t given it this time🤔

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  • Posted

    I seem to have the same problem. I had a uretorscopy this past October and last month I found out I have another 5mm. Mine like to sit in my left kidney and don't want to leave. The right kidney has allowed me to pass six individual 4mm stones. It doesn't appear to be oddly shaped like my left one (very deep lower pole that collects sediment and it can't reach the exit that is higher up).

    Another thing my urologist mentioned was that one reason some of us develop stones so quickly is that we might not have flushed out all the debris after the shockwave or laser lithotripsy. In that case, we are leaving material for the calcium oxylate to build on.

    I also get a lecture on every visit about not drinking enough water. I'm doing my best, but the minimum 120 ounces is very difficult to meet. Especially with my job because I am in and out of appointments with little time to hydrate between them. Or I just forget. I wish there was a pill I could take that would encourage thirst. I have started getting into green tea and hope it will help increase my fluid intake.

    I would think tamsulosin would help with the narrowness, like Assassin mentioned. Passing my 4mm's was misery (ER visit). When I was sent home to pass the rest, I was given tamsulosin and hydrocodone. I barely noticed the 2 that were almost 5mm that I passed the following week. It makes a difference.

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  • Posted

    I too had a kidney stone in the past and woke up at midnight in excruciating pain. This time though I noticed intermittent mild flank pain and it just felt sore under my ribs on the side of my body. I thought I pulled a muscle but then I noticed a weird lower abdominal cramping only when I urinated. I had a CT scan and they found a 2-3 mm stone on the lower part of my right kidney. The weird urinary symptoms are coming and going, and I think every time the stone moves down my kidney I get weird symptoms. 
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