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Can you have "CHRONIC INFLAMMATION" , BUT NOT HAVE IC?

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  • smcclafferty
    replied
    Kickme, what have you been diagnosed with? Also, do you have symptoms of IC? I have also heard that you can have IC with a perfectly normal looking bladder.

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  • MarthaF
    replied
    Hopefully better testing is on the way. Read this abstract about a new device being developed at UCLA:
    http://jcm.asm.org/cgi/content/abstract/44/2/561

    I wrote to a researcher telling him that I was glad this was in the works since current testing was not adequate. He responded "I couldn't agree more". They hope to be able to find more than E. coli that most doctors think is about the only cause of UTIs. There are many other species of bacteria that can travel to the bladder, especially in women. In over 100 years that they have known about IC, or "Hunner's ulcers" as it was called in the beginning, they have been looking for a cause. All we have heard so far are about symptoms and treatments for symptoms. Something has to be causing the inflammation, frequency, pain and urgency, and sometimes ulcers. We now know that stomach ulcers are caused by bacterial infection.

    Martha F

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  • jen74
    replied
    Wow, that is pretty interesting. Now only try to pound that into the heads of these uro's and urogyne's. They dont believe IC has anything to do with infection or bacteria and they solely rely on their cultures.
    I agree they really need to get with the program. My gastro doc has said that urology is still in the dark ages.. I wish they would do more research on this disease.
    Jen

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  • MarthaF
    replied
    According to a urogynecologist I talked to inflammation is very common in IC-diagnosed patients. Some of us know that although we were told we did not have bacteria and infection, a broth culture done later did show bacteria and we responded to the right antibiotic. The typical lab culture (agar plate) does not always find every possible species of bacteria since some are too slow-growing and fastidious to grow on an agar plate in 24-48 hours. No one has ruled out a bacterial infection, which could explain inflammation, but they only claim that their cultures do not find bacteria. I know many who have been found to have bacteria, with their inflammation, via a more extensive broth culture. Researchers are working on better culturing since they know the agar plate is not always adequate. It has been in use over 50 years so it is time for new technology.

    Martha F

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  • jen74
    replied
    Hi.
    I was actually diagnosed through a regular cystoscopy. My bladder was extrememly inflammed and vascular according to the urogyne who did the cystoscopy. I did not do the hydro as I read it is not the gold standard they like people to think it is as far a Diagnosing IC.

    My gyne told me there were studies done where they did the hydro on people with IC and people without IC. Well, low and behold, there was pin point bleeding found in alot of the patients that did not have IC. THe hydroditention caused their bladders to bleed which makes sense because if you stretch your bladder beyond it's capacity, it is going to cause some damage to the bladder wall in anyone, let alone an IC patient.

    I think for people who get help by doing the hydro, then that is great, but as far as diagnosing IC, they can do that without doing a hydro. If you have severe pain in your bladder and they rule out cancer and other things, then it is probably safe to say you have IC. That is just my opinion though.
    Jen

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  • purpleviolet
    replied
    lucky in a way

    To kickme,

    I read your post that your bladder looks good, so maybe its lucky and maybe some of your symptoms are pelvic muscle tension. I just read this book "Headache in the Pelvis" and both men and women can have chronic unconcious tension that feels like something is drastically wrong with the bladder. So check that stuff out and good luck. PV

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  • kickme
    replied
    My urologist said that my cystoscopy and hydrodistension suggested that my bladder was healthy, no marks or ulcers on the bladder and good capacity, etc.

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  • shelbyriva
    replied
    Hi Kickme,
    I had a cystoscopy with water filling my bladder and nothing showed up but then my Urologist took me to the operating room and under anesthetic and cystoscopy and water to increase the size of my bladder (maybe that is called hydro distension???) it showed that I had IC. From what I have read, it is rare to diagnosis IC from a cystostopy without being under Anesthetic and the procedure done in the OR. Just what I have read and it was true for me. Maybe you need to insist on a further investigation.

    Leave a comment:


  • smcclafferty
    replied
    Originally posted by kickme View Post
    Hi!
    I have the same question you do about is it possible to simply be experiencing a chronic inflmmation but not IC. My urologist tells me this is a possibility, and my cystoscopy w/hydrodistension did not reveal IC. Did you ever get a good answer to your question, as I'd like to know too! Thanks!
    Hi kickme...I wanted to ask you, what DID your cystoscopy with hydrodistention show? Thank you.

    Leave a comment:


  • jen74
    replied
    I believe IC is just a name for unexplained chronic inflammation of the bladder. This is why doctors have no clue on what causes it or why some get it. I really think it is like an autoimmune disease where our bodies are actually attacking our bladders and causing the inflammation. Just my thought.
    Jen

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  • kickme
    replied
    for smmclafferty

    Hi!
    I have the same question you do about is it possible to simply be experiencing a chronic inflmmation but not IC. My urologist tells me this is a possibility, and my cystoscopy w/hydrodistension did not reveal IC. Did you ever get a good answer to your question, as I'd like to know too! Thanks!

    Leave a comment:


  • maryla
    replied
    Spasms?

    Yes, Shelbyriva, Our IC are all so different, what works for one may not for another.

    My bladder spasms sometimes feels like I have to go pee "right now" then when I go nothing will come out......and the pain feels like I'm trying to pee a football and it radiates to my back, then I have spasms where I haven't made it to the bathroom and peed myself.

    Just listen to your body, we are all so different. I really didn't know what spasms felt like either, I finally figured it out by trying to cath myself and all I got was dribbles of urine out while it felt as though my bladder was going to explode it felt so full and yes it hurts so bad.

    We r here 4 u!

    God Bless

    Leave a comment:


  • patricia1
    replied
    Hi !! shelbyriva

    This is what my "Burning" feeling feels like. Everytime I go to the bathroom and urinate it burns. Like I have UTI. My bladder spams make my bladder feels like it is full and sometimes I get the urge that I have to go now. The one thing about IC is it is so different from person to person. This is one reason there is no one medicine that helps everyone.

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  • shelbyriva
    replied
    Hi Patricia,
    Yes I have had a cystoscopy (twice), Urethra stretching, Urodynamic testing and a bladder dialitation done in the OR and the Urologist said I had "classic symptoms" if IC. I am just not clear what people mean by "spasms" and "Burning". Is a spasm after urination when you kind of feel a painful 'contracting' type feeling? I was on Ditropan before my final diagnosis and it made me so sick

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  • maryla
    replied
    Spasms?

    Hello, and PLEASE get a copy of the ic handbook. It is very helpful. Yes, sometimes I have spasms so bad it feels as if they come from my very soul, it is sooooo hard to explain, They are just so painful. I cannot take any of the anti-spasm med, like ditropan, they all make me so sick at my stomach. You might want to tell your DR. if you are currently taking something that it is not working and try something else.

    I'm here 4 u, God Bless,

    Leave a comment:

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