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  1. #1
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    Young man with possible IC - could use some advice.

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    Hi all, I've been reading these forums the last few days while waiting for my registration to process. Hoping someone with an IC diagnosis can help me figure out if this is what I've been suffering with.

    I'm 24, and I've been dealing with lower abdomen and urination pain for at least five years now, and have only recently (within the last 6 months) had any attention paid to it by my GP. They say the symptoms sound like kidney stones (after ruling out an STI or UTI), as back then my description was simply "intense stinging pain when urinating and occasional sharp pains in my lower abdomen when stretching".

    A few days ago I experienced the worst flare-up I've ever had. I spent four hours in the bathroom gasping for air and tearing up while my symptoms attacked in constant waves. I noticed dozens of small, white particles that looked similar to large flecks of snow around the walls of the toilet. At this point I tried to collect a sample to schedule an emergency appointment with my GP (put on some gloves and tried to relocate them into a sandwich bag (I know I was desperate)), however what I previously thought were "stones" almost vanished under pressure, like fragments of chalk. At this point I was pretty defeated and went against my usual policy, googled the symptoms, and came across a few posts from this site.

    As someone who suffers from IBS, I'm familiar with the concept of being diagnosed via process of elimination. I'm almost certain this isn't kidney stones as I have never actually passed a solid "fragment", I know it isn't a UTI, as my doctor has ruled this out, or an STI as this began before I had ever had sex. While I know my best option is to talk to my GP about it (and I will!) I'd like to hear some thoughts from some of you out there who have gone through this first-hand, as in my experience with doctors they have often overlooked "niche" issues and put it down to the most likely scenario.

    My symptoms include:
    • Pain and discomfort in and around the end of the urethra and lower abdomen, signalling an oncoming flare-up when I next urinate.
    • White particles, lumps, floaters, crystals, whatever - as described above - only occurs during flareups, never during pain-free urination.
    • Cloudy, chalky urine.
    • Intense pressure and pain while urinating, sort of a mix between burning, stinging, and constriction.
    • Intense, sharp pain around the "adonis belt/v-line" area of my lower abdomen, as if some kind of tube or tract is being pulled taut on both sides.
    • Dull pain in the groin area.
    • Overwhelming urge to urinate even when my bladder feels empty after (during) a flare-up. If I attempt to leave the bathroom the pain intensifies.
    • Seems to be brought on by stress, anxiety, and breaking my IBS diet (wheat seems to be the biggest trigger food for me). Otherwise happens weekly or bi-weekly without any apparent reason, and causes varying degrees of frequent flare-ups over two or three days before subsiding.
    • Slight burning pain at the tip of my penis for a few hours after finally leaving the bathroom - similar to the pre-urination pains in the first bullet point


    There are also a few symptoms I find difficult to describe:
    • I can feel the "particles" travelling through my urethra causing a very unsteady flow of urine, rather than a continuous stream. This is more uncomfortable than painful, but it's very noticeable.
    • One I don't look forward to describing to my GP: During more painful flareups I experience waves of pressure somewhat comparable to an intense orgasm (without the positives!) while urinating. I get a rush of what feels like very high pressure radiating upward from my groin to my head, hearing becomes dull like I'm underwater, and my ears begin to ring for a few seconds.


    Finally, for anyone brave or stupid (I won't judge!), as I have never been able to collect a sample I snapped a photo to hopefully help with diagnosis. I've included it (here) for anyone with a strong stomach.

    Does anyone with an IC diagnosis find any of this familiar? I will be talking to my GP very soon but I want to get some first hand perspective so I can be informed about this issue when I see them.

  2. #2
    ICN Member cindydi's Avatar
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    Re: Young man with possible IC - could use some advice.

    The pain sounds the same as IC, but the particles make me question it. I have never experienced particles in my urine. I would suggest going to see a Urologist to get some answers and relief for your pain.
    William Ellery Channing:
    Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.

  3. #3
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    Re: Young man with possible IC - could use some advice.

    Thanks Cindydi.

    I found this forum from searching the particles description on google. It seems like many of those who suffer from IC refer to this as tissue shedding from the walls of the bladder. Seeing a urologist will likely be the next step after speaking to my GP.

  4. #4
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    Re: Young man with possible IC - could use some advice.

    Yes,other ICers here have recently reported finding white stuff in their urine & referred to the shedding of their bladder lining. Also there seems to be a close association between IBS and IC for some ICers. Have you started the IC diet yet? Look for the information heading of the home page of the IC Network (far left one). It has topics and really good information that will help you know what to expect & /or ask about at your urology appt. The videos explaining the current AUA guidlelines for IC treatment and the one for the subtypes of IC are especially helpful. The diet is very important. Good luck! shorty

  5. #5
    ICN Member
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    Re: Young man with possible IC - could use some advice.

    Doing some reading on the IC diet first before I commit to it. I already struggle with the low FODMAP diet as I seem to be sensitive to every group. As such my diet is already very restrictive and I'm not looking forward to cutting out more foods if the diets are even compatible. Thanks for the guidance!

  6. #6
    ICN Member
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    Re: Young man with possible IC - could use some advice.

    I understand. At least cut out the awful foods-coffee,cranberry anything,alcohol,vinegar/acid anything,citrus,anything with concentrated tomatoes (ketchup,marinara,etc).And try to drink plenty of water to dilute your urine. Some people take OTC "Prelief" before they eat not safe foods to help.

  7. #7
    ICN Staff ICNDonna's Avatar
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    Re: Young man with possible IC - could use some advice.

    There's a link to diet information in my signature below. I suggest you begin by avoiding any item that's on the list of things to avoid --- and give Prelief a try.

    Donna

    PS to the IC Network.
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/




    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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    Anyone who says something is foolproof hasn't met a determined fool

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