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  • KarenAnne
    replied
    teachhealth: I really don't have any horror stories for you. I did have to see four urologists before finding one who specialized in IC. That happens with this disease. But I am living a normal life & on a good treatment plan that works for me. I had no trouble with the cysto/hydro or any other tests. The diet really helps alot of us & it wouldn't hurt to stay on it until you get a proper diagnosis. Best of luck to you!

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  • cmclien
    replied
    I don't believe going to the bathroom frequently will make your bladder shrink but over time it will train the bladder to signal you it has to go when it is less full and you get into a vicious cycle.
    Inflammation from IC can make the bladder shrink though. I don't know how long that takes and how bad the inflammation has to be for that to happen but I just read in the Merck medical manual, heres the text:

    "Interstitial cystitis is painful inflammation of the bladder without evidence of infection. It is usually chronic. The cause is unknown. No infectious organisms are found in the urine. Typically, middle-aged women are affected. It is very unusual for men to be affected.

    Symptoms include very frequent, painful urination. The urine may contain pus and blood, which are detected by microscopic examination. Over time, the inflammation may cause the bladder to shrink. An examination of the bladder by cystoscopy may detect small, shallow areas of bleeding and ulceration".

    I hope that doesn't make you more anxious, as people have this disease for years and years and there is no real and total cure but symptom relief so waiting or putting it off for awhile I don't think is going to make you worse but I think you will have some peace of mind once you are actually diagnosed.

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  • teachhealth06
    replied
    Thanks everyone! I am looking into calling a Uro next week or even tomorrow to ask what they can do while I have to save for the cysto. I worry constantly about my bladder shrinking but I know focusing on that isn't going to lower my anxiety...we all know that anxiety triggers pain...blah!!! Can anyone ease my mind about the bladder shrinking thing? I'm still learning everyone's screen names so I am sorry if I can't pinpoint things personally just yet BUT I soooo appreciate the support.

    YES...herbal coffees are worse than reg. coffee with preleif. I can usually do well with a small starbucks blended coffee light frapp if I take my prelief but here lately it just isn't happening. I have a new boyfriend and we have been having some arguments so maybe that stress kicks in after the fact and makes me weaker to a flare?

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  • cmclien
    replied
    The cystoscopy by itself can spot alot like tumors, obvious sores on the bladder wall which would prob indicate IC, urethra inflammation and other stuff that I'm not aware of I'm sure lol. It also gives them an idea about your normal bladder capacity as they fill it up to where you are getting uncomfortable but it doesn't hurt.
    I think the hydrodistention is helpful if like my case they didn't see any IC. My doctor still doesn't recommend the hydro at this point I guess because he feels like we can start with conservative treatment and move to more aggressive treatment later like instillations if I don't improve but he's not a big advocate of them. I guess all doctors are different. He said it probably wouldn't effect how he would go about my treatment but would get me out of the grey area. I have elected for now not to have it done.

    Hey, those herbal coffees bother me too! I thought it was just me. I almost think they are worse then regular coffee with prelief. A couple times after drinking roastaroma I had some stabbing pains.

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  • ICNDonna
    replied
    They can rule out other possible problems without a hydrodistention --- and you might want to ask about having a potassium sensitivity test --- some ICers were diagnosed by that test.

    Donna

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  • teachhealth06
    replied
    Thanks for all your opinions. I know I need to make an appointment...money is just an issue even with insurance right now (not a surprise for any of us I'm sure). I would love it if it were something fixable but am pretty sure it is IC bc they ran a bunch of tests back when all this started. I seem to flare every other week so that worries me...don't want my bladder to get smaller or progress bc of the flaring...I guess that is what I'm asking too. Believe me, I know the pain even though I go through it without medicine right now. There have been a few times where I thought I should go to the emergency room. I have tried the herbal coffees but they hurt, I've tried the herbal teas but they hurt etc...so I guess nature is trying to just take away my favorite thing in the world lol!!! As long as you guys can tell me that I probably haven't made the disease progress then I can relax a little. Thanks so much! Is there any way they can check for stuff without the hydrodestintion?

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  • Linda May
    replied
    Ic

    I agree with donna go see a uro for your own well being.

    Leave a comment:


  • cmclien
    replied
    Hi, I agree with the others but my story is very similar to yours. I am 48 but have had symptoms since I was in my early 20's! I only went for a cystoscopy (not hydro-distention) believe it or not today! I was so fearful for nothing and at the very least am starting a process of trying to reduce symptoms with diet, vesicare and timed voiding. Your symptoms sound alot like mine and you are functioning. I never got worse over the last 25 years but its hard to say if we actually have the same medical problem, you know what I mean? I have periods of time where its bad and others where its not, the anticholinergenics like vesicare have helped me but even my GP was willing to prescribe those without me seeing a uro. As far as your coffee habit goes have you tried the lower acid coffees out there? I personally like the hevla flavored coffees that I order on line but there are others. Have you tried taking prelief with the coffee to reduce the acid and have you cut some of the caffeine out getting maybe a half calf instead. Just suggestions. Good luck.

    Leave a comment:


  • VickiB
    replied
    If it is IC I don't think that means it will necessarily get worse if you remain undiagnosed. My symptoms began in the mid '70s but I was not diagnosed and treated until 2004. In all that time my IC got no better nor any worse. However, once diagnosed & treated I started getting better so I am a bit partial towards the 'it's good to be diagnosed' line of thinking.

    But I have to agree with Donna here in that there are other things that present similar symptoms as IC that might make it worth getting checked out. Who knows, maybe it's even something that could be fixed!

    One last thing on the horror stories. We see that here too. I've found on the most part people don't tend to talk or post so much when things are going okay. Keep that in mind while reading here!

    Vicki

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  • ICNDonna
    replied
    I would say you are making a mistake in not getting medical attention. What you have might be interstitial cystitis, but what if it isn't? There are other potential problems that have similar symptoms --- at the very least, I would suggest you have those ruled out. If you do have IC, you at least will know what's going on and can take steps to help you feel better.

    Sending warm healing thoughts,
    Donna

    Leave a comment:


  • Lilwolf78
    replied
    You're pretty lucky

    Hi im 32 and was diagnosed with IC 3 years ago, but i have had it much longer than that probably 5+ years. If you're able to function and do the things you normaly do like school or work without any problem then you should be ok.
    I would just cut off coffee completely. I had to give up soda pops (dr. Pepper) and spicy foods, because i was miserable.im talking staying up all night running to the bathroom every 20mi. It would hurt to walk, trust me you dont want to reach this point, youre pretty lucky if you have been able to manage your discomfort for these years. in order for me to funtion normally
    i HAVE to take my meds otherwise im miserable.

    Meds.
    Elmiron
    Imipramine
    Norco (hydrocodone)

    Good luck hope you never have to end up in the ER with horrible pain, like i did more than once!!!

    Leave a comment:


  • teachhealth06
    started a topic Have I made a huge mistake?

    Have I made a huge mistake?

    Ok, so I feel like I started having symptoms of IC with only frequency when I was 18 or so (now 27). I have never been diagnosed by a urologist but I had my gyno tell me they thought I had a little bit of IC when I was 22 or so. I have not followed through with a cysto with hydro or ever began medicinal therapies because I have been too afraid to due to horror stories I have read. I have been able to manage my IC pretty well minus my coffee problem but am starting to freak out that maybe I have done myself more harm than good by not getting on medications. Will my IC get worse if I do not? Will my IC get worse if I keep drinking coffee (I know that it makes me pee more and have some pain for a day sometimes more and I admit this...I KNOW GIVE IT UP) Will going to the bathroom when I get the urge and frequency make my bladder shrink? These are all questions that have left me confused with your basic internet searching. Again, I am 27 and have shrugged off doctors since I was 22...23/24 when it got obvious I had a problem.

    THANKS!!!

    Taking:
    Quercitin
    Serrepeptase
    Colostrum (most of the time)
    marshmallow root with some aloe (occasionally)
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