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  • interstitial cystitis

    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.

  • #2
    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
    La tristesse durera toujours...

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    • #3
      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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      • #4
        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.
        The doctor of the future will give no medicine, but will interest his patients in the care of the human frame, in diet, and in the cause and prevention of disease. - Thomas Edison

        Vancouver Island Primal and Paleo Living <<< join our Facebook Group

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        • #5
          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.
          sigpic "Boy I got vision and the rest of the world is wearing bifocals" - Butch Cassidy and the Sundance Kid

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          • #6
            I think interstitial cystitis (a chronic pain syndrome) is getting confused with acute bacterial cystitis (aka bladder infection / UTI).

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            • #7
              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.
              sigpic "Boy I got vision and the rest of the world is wearing bifocals" - Butch Cassidy and the Sundance Kid

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              • #8
                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.

                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/
                312/149/150

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                • #9
                  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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                  • #10
                    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



                    iherb referral code CIL457- $5 off first order

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                    • #11
                      I was diagnosed with interstitial cystitis, but nothing I did for it really helped.

                      One day I came across information on Pelvic Floor Disorder on a message board for interstitial cystitis and had an 'aha' moment.

                      Pelvic Floor Disorder basically means that your pelvic floor muscles have tightened and then shortened. This causes nerve pain and also causes your muscles to not work properly. A lot of times your nerves will imitate pain you've had before (in my case UTIs--so even though i didn't have any infection, it felt like I had a UTI ALL THE TIME). Besides the pain, PFD can also cause: irritable bowel syndrome, painful sex, painful urination, premature ejaculation, incontinence, not able to empty your bladder completely and impotence. It is estimated that 1 in 3 women have PFD, but hardly any of those get diagnosed correctly.

                      I went to a physical therapist who specializes in pelvic floor issues and got diagnosed almost immediately (unlike diagnoses for interstitial cystitis, which sometimes is difficult to diagnose).

                      I have been doing physical therapy for six months in order to stretch my muscles and lengthen them and also to strengthen them. I started seeing a little improvement after about 2-3 months, but now, six months into, I'm seeing drastic improvements. I'm not 100% better, but I'm about 70% better. I hurt less often and with less pain. I am able to have pain-free sex. I urinate without pain most of the time. And, I am now emptying my bladder completely.

                      Also, prior to physical therapy, I could have sworn that all my pain was coming from my urethra and bladder. But, once my therapist started stretching out my internal vaginal muscles, I could feel that that pain was coming from painful knots in my pelvic muscles and not my urethra at all. This was really shocking to me, I would've never guess it!

                      From everything I've read, I think interstitial cystitis is often misdiagnosed. I think it's really more often pelvic floor disorder. I went to see several urologists and doctors and never heard of PFD--it took research on my own to finally find an answer (how in the world would have I guessed to go see a physical therapist?!). Regardless, there is evidence that many women with IC also have PFD in addition to IC--all that pain down there causes you to tense up your muscles. Tense muscles eventually shorten and causes a ton of pain. It's really frustrating to me how little doctors understand women's pelvic muscles and everything. It's hard enough to find someone that specializes in IC, much less knows anything about PFD!

                      My advice?

                      I found the book Heal Pelvic Pain by Amy Stein to be very, very helpful. Other people recommend A Headache in My Pelvis, but I've not read that one.

                      To find a physical therapist or doctor that specializes in pelvic pain issues go here: http://www.pelvicpain.org/providers/find_provider.aspx .

                      Understand the healing takes time--it took time for your muscles to get this way, it will take time to get them back!

                      Do everything your PT tells you and do it regularly. Some days, I feel like I spend half my day making sure my pelvic muscles are ok: vaginal dilations, realignment exercises, stretches, and walks--but it helps, it really does and it will get you on the road to recovery more quickly!!

                      For me, I found that sitting was causing the biggest problem as it stretched some of my pelvic muscles more (it took me five months after starting physical therapy to figure this out though!). So, I have to get up and stretch every half hour (I set a timer, because I work on my computer a lot and 30 minutes can just whiz by!). This has made a huge difference.

                      FOr more information about PFD and therapy, go to the Interstial Cystitis message boards at this link: http://www.ic-network.com/forum/forumdisplay.php?f=54 .

                      Please feel free to message me if you have any other questions. I don't always check my email, but I will eventually answer it.

                      I had IC-like symptoms for three years and for two of those years kept getting diagnosed with UTIs (even though docs never cultured my urine). I know how frustrating this whole thing is. So, I'm very into spreading the word. I'm so thankful I ran into this info online and hope that sharing it helps out!

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                      • #12
                        I'd like to add that, if you get a negative diagnosis about PFD and only have IC, the low acid diet is the way to go (from what I read--obviously, I didn't end up having IC, so going on the low-acid diet didn't really help). I've also read from women with IC that have said that going low-sugar helps a lot too.

                        If you only have IC, then the information on this site is really helpful: http://www.ic-network.com/

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                        • #13
                          Oxalates ....

                          http://www.nytimes.com/1993/10/27/he...pagewanted=all

                          there's an excellent Yahoo email group my sister belongs to, going deeply into oxalate problems. Oxalate can cause incredibly painful problems as it accumulates where it shouldn't be. Your sister could try taking a probiotic called VSL#3, which restores the flora needed to break down oxalate, so it doesn't accumulate in the tissues.

                          Check out the email group, it has some very smart and knowledgeable people in it:
                          http://health.groups.yahoo.com/group..._Low_Oxalates/

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                          • #14
                            It would be reasonable for your sister to try to avoid the worst oxalate offender foods while she was learning about this --- foods like spinach, beets, chard. She could Google "oxalates in food" to get lists of high, low, and medium.

                            Once in awhile, my sister sends me the best posts from that list. Highly recommended. She can find fellow IC veterans there, who can show her the lay of the land.

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                            • #15
                              Cillakat, it's possible that your trouble with IC when you were vegetarian might have come from eating such large amounts of high-oxalate foods. Lots of vegetables are high.

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