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    StoneAgeQueen's Avatar
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    interstitial cystitis

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    Hi folks. Just wondering has any advice or experience with interstitial cystitis (painful bladder syndrome)? My sister has had this for a few years. She gets treatment from the hospital but nothing seems to work much and she's constantly in agony.

    Thanks

    Fiona.

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    Shrinking_Violet is offline Senior Member
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    Is she taking cranberry extract? It's the best thing (because it WORKS! Though if she's under a urologist, maybe she's tried it and it's not done much for her. I know it works for me but, then, YMMV.)

    Sarah
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    Thanks Violet I don't think she's gone down the natural route yet. I've tied to convince her before, but she's sceptical. I've heard that an acidic body can cause IC, and she's a vegetarian.

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    Cranberry extract for sure! You can get it in capsule form, which is basically dried powdered cranberry, or you can eat them raw although cranberries are pretty bitter on their own. I used to get the occasional bladder infection that would hit me out of the blue and I would chug about three litres of unsweetened pure cranberry juice in a day and it would clear itself up like magic. Other women I know would be in pain for a week or more even when on antibiotics (my doctor at the time wrote me scrips but I never filled them).
    If she has never consulted a naturalpathic doctor maybe she should? They tend to examine lifestyle and nutrition to find the cause of problems and then they decide how best to treat it. Sometimes that involves supplements and sometimes lifestyle changes. But at least she would know what is responsible for her discomfort.
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    I had this problem for YEARS. High amounts of sugar make it worse... carbs, alcohol... anything high in sugar. Also it used to hit when my immune system was low... so when i was staying up too late and so forth.

    The ONLY thing that will make it go away entirely is changing eating habits. Primal works, but anything that eliminates the sugary stuff and supplements with whole foods will help immensely.

    As for the symptoms itself, there are two things that I would take when I felt that feeling coming on: D-Mannose and Uva Ursi. D-Mannose is basically the part of the cranberry that works against bladder infections. It causes the bladder lining to become inhospitable to the bacteria, which would then flush out. You can get it in powder form, it doens't have taste. Just take a teaspoon with water every few hours. Uva Ursi is an herb... you can get it in tea form or as a tincture (drops you put in water). This has a small taste, but it only takes some drops in water. It may have some contraindicatoins with other meds as it is an herbal medicine, though i've not had any problems. I prefer the tea though, it's easier, and you can sip on it slowly.

    Frankly, though, until she changes her diet she'll most likely deal with them on a fairly regular basis.
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    I think interstitial cystitis (a chronic pain syndrome) is getting confused with acute bacterial cystitis (aka bladder infection / UTI).

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    Quite possibly though when I was having what felt like "blatter infections/UTI" I'd go to the doctor and they'd test and find nothing. I also was getting them every 3-4 weeks for a year. The doc was thinking it was IC because of the pain and they couldn't diagnose it as a bladder infection. I think sometimes the two are related/confused...and many times recurrent bladder infections are diagnosed as IC because they can't figure out what causes them.

    Regardless, the meds above worked for me, but changing my diet completely and getting healthy (sleep/eating well/lower alcohol, etc.) got rid of the problem completely. It took about a year, though... I would still feel the "oncoming" feeling, and would douse with D-Mannose to keep it coming on. Slowly it got more and more infrequent and finally stopped.
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    Quote Originally Posted by StoneAgeQueen View Post
    Thanks Violet I don't think she's gone down the natural route yet. I've tied to convince her before, but she's sceptical. I've heard that an acidic body can cause IC, and she's a vegetarian.
    An acidic body can aggravate IC. There is no known cause although it is thought to be some type of auto immune deficiency.

    CRANBERRY IS THE WORST THING ONE CAN HAVE WITH IC!

    The body needs to alkalized more and many acid-causing foods need to be avoided. Many have had great results using Prelief. It is critical to follow an IC diet to let the body heal and find relief from the pain.

    Quote Originally Posted by avocado View Post
    I think interstitial cystitis (a chronic pain syndrome) is getting confused with acute bacterial cystitis (aka bladder infection / UTI).
    This is very important and very true. I went for decades with IC continually being diagnosed by countless doctors and urologists as having UTIs when there was no bacteria. Antibiotics were prescribed when they were not needed and of course, they did nothing to help the IC.

    I always suspected the key to relief with my IC was diet related but could never figure it out. Thanks to a wonderful urologist I found a couple of years ago, I am now pretty much pain free and not having that insidious urge to always go pee.

    Prepared/processed commercial foods with additives must be avoided. Any and all soy must be avoided. This made a HUGE difference. Artificial sweeteners, caffeine and chocolate are problematic for many. Natural, whole foods are the way to go. There is a prescribed IC diet that your sister should look over. There is no one list of foods; it is very much an individual trial and error process to see which foods do or do not cause flare ups. As mentioned, Prelief is very helpful when having some acidic foods such as a cup of tea or coffee or tomatoes.

    http://www.ic-network.com/diet/2009icdietlist.pdf

    I have also had good results taking marshmallow root (supplement and tea). Both should be available at any health food store/natural market. My urologist prescribed Elmiron and has suggested instillation therapy for further relief.

    I highly recommend she read Catherine M. Simone's books. Along The Healing Path is a holistic perpective of interstitial cystitis with information on various alternative treatments, herbs, and natural products. Her earlier books, To Wake In Tears and Awakening Through The Tears helped me realize that I was not alone and that others suffered with this insidious, painful and usually mis-diagnosed and treated disease.

    Does she also suffer from vulvodynia? Many women with IC also have vulvodynia too. If so that requires additional dietary restrictions to treat it and eliminate the pain it causes.

    Here are some websites I have found very helpful. Please feel free to let me know if I can be of any further help. And let your sister know there is a way out and that there is a life without that pain. It doesn't happen overnight and takes a bit of work figuring out what foods you can eat in the beginning but it will happen.

    http://www.ic-network.com/
    http://www.evenbetternow.com/interstitial-cystitis.asp
    http://www.vulvarpainfoundation.org/

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    Thanks guys. Yes, I think some of you are confusing IC with an ordinary bladder infection, which it is not. There is no infection present in the urine, just pain and burning. It seems to be an auto immune response. I think alkalising her diet would help, but that'll be difficult since she's a vegetarian and relies on grains. She drinks a lot of milk too.

    Mizski- thanks so much for the links. I'll show them to her.

    A few years ago I started getting symptoms of IC too- constantly going to the Doctor with bladder infection symptoms, but when they tested it there was no infection present in the urine. Mine went away when I started low carbing and eating a lot of vegetables.

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    Quote Originally Posted by StoneAgeQueen View Post
    Hi folks. Just wondering has any advice or experience with interstitial cystitis (painful bladder syndrome)? My sister has had this for a few years. She gets treatment from the hospital but nothing seems to work much and she's constantly in agony.

    Thanks

    Fiona.
    I had IC (and frequent infections) when I was veg. It went away when I went off gluten. This was one symptom that didn't require - for me - any other measures.

    Whenever there is an "itis" going on, inflammation is present. where there is inflammation present, there is something causing the inflammation -
    lectins in grains and legumes
    lack of sleep
    lack of vitamin d
    dairy
    sugar



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