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  1. #1
    ICN Member
    Join Date
    Aug 2017

    Young man with possible IC - could use some advice.

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    Quick note: I posted this in the wrong section of the forums. Actual thread in the appropriate place here:

    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.
    Last edited by Carn; 08-09-2017 at 02:02 PM.

  2. #2
    ICN Member
    Join Date
    Oct 2007

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

    All I can say is that a couple of supplements have helped me.
    MSM Capsules 1 or 2 per day
    Just Barley or Alfalfa capsules (Oregon's Wild Harvest Organic) to keep you alkaline
    Also-if you have bloating in your colon in can push against the bladder. I suggest jarrozymes Plus with each decent meal
    Try to eat alkaline-I always have a salad a day and try to eat as many steamed veggys as I can.
    Take Prelief before anything acidic like tomato sauce or coffee or anything spicy which should be avoided anyway during a flare.
    Take a probiotic in case there is a bug issue-I switch between GutPro and Megaflora
    Hope this helps

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