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My Story- I Found the Key

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  • LivesintheSun
    replied
    I'm glad too Bonbontom, fingers crossed for everyone out there.

    Tealca, no, I didn't have that symptom. I hope you figure it out.

    Leave a comment:


  • bonbontom
    replied
    Me too!

    LivesintheSun,I'm so glad you posted this! I think there are many desperate and possibly misdiagnosed people who will benefit from your story.

    I'm quite certain that yeast was my biggest issue as well. I remember when I first heard the suggestion that my bladder pain could be caused by yeast overgrowth. I thought it was preposterous. I know differently now, of course. Your post gives me more conviction in my own anti-candida battle!
    Last edited by ICNDonna; 01-15-2011, 03:36 AM.

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  • JeanAnn56
    replied
    Originally posted by Tealca View Post
    LivesInTheSun - Many of your symptoms and experiences mirror mine, thanks for sharing! Your post has inspired me into doing a ton of research tonight on Candida and anti-fungal diets, etc. I am definitely prone to fungus all over my body since developing my IC symptoms as well as PCOS in my late teens. I know in my gut (so to speak) that they are all related.

    Personal question alert. When you mention having cystitis after sex, did you ever notice tiny round and painful lesions around the urethra and sensitive areas? I always notice these whenever I have had a flare up that lasts for more than a couple of days. I imagine they are what's coating the inside of my bladder and that it has spread to my urethera and escaped, making intercourse impossiblly painful. I've had them cultured but my doctor was mystified and said white blood cell was up but that was it, and sent me home with a shrug and pain killers.
    Hi BetterNow,

    I agree with the diet soda....I was drinking so much diet pepsi just before I came down with the IC. Actually I had mild symptoms. Remember drinking a can of diet pepsi and then it happened the pain!!!! Went to docs. of course even though I had no bacteria they put me on antiniotics for a bladder infection. Seven doses latter i finally went to an NP and she said I had IC then she sent me to a uro for the final diagnosis.
    I stopped drinking and eating anything but water, potatoe and oatmeal. I watched what i ate for a years....then i was ok. I have now been in a flare for 3 months. cant seem to figure out the triggers.
    Before this flare i was drinking diet soda, not cafinated but still diet and started eating lots of grapes and strawberies. There were other foods before that in the last few years that helped to break down again. ALSO I had 3 surgeries and lots of dental work done. So it was driven over the edge. I was in remission for about 3 years. I am now trying to get back what I had. Its a slow process and I am using herbal products that help so much.
    jeanann

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  • Tealca
    replied
    LivesInTheSun - Many of your symptoms and experiences mirror mine, thanks for sharing! Your post has inspired me into doing a ton of research tonight on Candida and anti-fungal diets, etc. I am definitely prone to fungus all over my body since developing my IC symptoms as well as PCOS in my late teens. I know in my gut (so to speak) that they are all related.

    Personal question alert. When you mention having cystitis after sex, did you ever notice tiny round and painful lesions around the urethra and sensitive areas? I always notice these whenever I have had a flare up that lasts for more than a couple of days. I imagine they are what's coating the inside of my bladder and that it has spread to my urethera and escaped, making intercourse impossiblly painful. I've had them cultured but my doctor was mystified and said white blood cell was up but that was it, and sent me home with a shrug and pain killers.

    Leave a comment:


  • LivesintheSun
    replied
    I think this is a fascinating discussion, betternow, I was shocked by your story, thank goodness you found out! Its so sad that they sell these products with the capacity to do so much harm. I'm pretty darned suspicious of artifical sweetners and their neurological effects too.

    Rocklandgal- no, I wasn't diagnosed with IC, the various doctors I saw had varying opinions of what was going on. Initially, the doctor thought I was getting repeat bacterial infections, this went on for about three years- lots of courses of antibiotics. But then they all kind of blended into one long painful bladder all the time (although I don't doubt I may have had some classic bacterial infections in my life). Then it was suggested that I might have had one particularly resistant infection. But all sorts of big-gun antibiotics couldn't solve it. It was also suggested that I might have a tight urethra and that it should be stretched. Another urologist suggested that I take Urovaxom (a kind of vaccine against the ecoli bacteria), even though ecoli had never been identified in a culture.

    Dipsticks sometimes showed high levels of white cells (infection), but then cultures were negative. On other occasions I'd crawl to the lab and all tests would be negative. Sometimes there were accute episodes with blood and pus in the urine, which responded to antibiotics, and there were also extended periods of painful urination, general sore and unwell feeling, urine sometimes being cloudy or smelling bad but no infection present (another three years). By the final year there were no periods of feeling well inbetween periods of feeling unwell and my bladder was totally ruling and greatly limiting my life. So it was all rather unclear. The final medical suggestion was that I had irritable bladder.

    It was some time after the point at which I'd realised that my body completely rejected Macrodantin (which was the urologist's best suggestion), and that anyway, there was no proof that any of this cystitis was bacterial, that I fortunately received the advice about the dietary approach.

    Anyway, I decided to write up what had happened to me here as I know this site is used by those who suffer from all types of cystitis (I myself spent a lot of time here), and also, because I was told that irritable bladder can develop into IC, so there may be other people whose bodies have travelled down the same path as mine.

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  • Rocklandgal
    replied
    Lives in the sun,

    Were you diagnosed with IC, or do you have some other type of cystitis? Your story is very interesting. Also, I just can't believe that some doctors still tell you to eat anything that you want because it makes no difference at all!
    There is so much proof othwise!

    Karen

    Leave a comment:


  • lonely sole
    replied
    thank you Julie for the encouraging words! It means a lot to me

    Things have been looking up lately, so I am hoping that sometime in the not so distant future I can have my own "success" story to post...

    Leave a comment:


  • Julie B
    replied
    Lonely Soul, because this disease is so individual, it is good to have these forums. I think the best thing is to listen to your body. I know that so many things I do today is because of a post I read here that really rang true for me. I tried these things and slowly but surely I got better.

    Hang in there......Hugs.................

    Leave a comment:


  • lonely sole
    replied
    Many thanks to the ladies who posted what worked (and did not work) for them! I've been dealing with IC for years now, misdignosed for most of them, etc. You know how the story goes.

    Based on what I've seen here, there doesn't seem to be one solid cause for IC, and correspondingly one solid solution. I personally am always extremely grateful to those who take the time to mention what they think went wrong, and what helped them. It is from reading those stories that I can draw parallels in my own life, and try different solutions. I guess it is up to us to solve our personal "puzzle".

    May 2011 be a year of healing for all of us.

    Leave a comment:


  • purpleviolet
    replied
    wow - impressive story

    Hey livinginthe sun - that sounds great! You must be on a very strict diet. Ofcourse, I never heard any conventional doctor mention some of these things, but it is precisely some of these alternative methods that have helped some people. Finding the key to fit the lock is the problem. My naturopath has a new PCR yeast test that some people may be interested in. It may not be my problem, but I bet it is some IC'ers problem and no regular uro doctor would even if think of a anti-yeast or gluten free diet, but I believe that will change because more people seem to be finding a solution in these ways. Ever since I saw quackwatch trash acupuncture I never trusted them.

    Leave a comment:


  • betternow
    replied
    My Success

    Hi,

    I'm new - I was googling for IBS and found this site by accident. Wish there had been computers and forums when I was struggling with IC.

    I only really joined to tell you of my IC success in case it helped others. Sorry if its outdated info, but it worked for me!

    In my mid to late twenties (over half my life ago) I developed IC. This was the mid to late 80's. Of course, no-one knew what it was back then and I was fobbed off with antibiotics all the time. In the end the GP was just dishing out antibiotics even when the results came back (again and again) stating there was no infection. I don't think they believed me. I got into such a desperate state. Uncomfortable, non stop feeling I needed toilet, feeling dreadfully unwell with it, then the electric shocks started - they got so bad they used to make me shriek - even at work. The hot water bottle was my friend but even that only help a tiny bit. This went on for a couple of years. I didn't think I could manage the rest of my life like this. It also made me very irritable to live with. Just horrible.

    In the end the GP sent me to a nearby hospital in London UK. As luck would have it a consultant urologist was visiting from the states and happened to be working temporarily at this hospital. She requested a biopsy of the bladder. She found (forgive me its decades ago so cant be precise) a kind of ulcerated surface in my bladder - I remember being told it was uneven - raised and dips and I had lost the lining of the bladder. When I came around from the biopsy I was told I could go home when I had been for a wee. Well the pain was off the scale. I literally screamed like I was being attacked and fighting for my life. The nurses came running, declared I was making a fuss (though they did look confused). In the end I had to force the wee out and was allowed home. My then boyfriend (now husband) held my hand every time I needed to pee and I continued to scream. Until it healed (I guess from the biopsy area they had snipped away to test). That was hell.
    Went back to see Consultant - she told me I was in luck, she had been researching IC (how lucky was that?!) and told me what to eat and what not to eat. CAnnot remember if she prescribed me anything (I dont think she did, but she may have). But she gave me the name of a US published book to purchase and to read it and follow the diet within. This I did and I was so desperate to be normal and not have the IC pain and problems that I followed it to the T. I gave up alcohol (not that I drank much anyway) and gave up acidic foods - tomatoes and fruit etc. I did this for around one year and slowly I started to heal. The odd occasion I gave in and ate something forbidden it all started again, so that made me really strict with the food and drink. Also the consultant worked out by process of elimination and talking that I had been on a diet and had discovered the new to the market soft drink DIET coke (this was the mid eighties) which I had consumed by the bucket load. By the appearance of my bladder (from the op and the biopsy) and the chat she concluded diet coke had stripped the lining of my bladder. I think it may have been down to the aspartame within the diet coke, but again, its a long time ago.

    Eventually my bladder healed and gradually I introduced foods. I didnt dare drink diet coke for many years, but at some point many years later I drank a little, and had no effect. These days I can drink it now and then and it doesnt bother me.

    I have never had IC problems again. I have however had two separate occasions to have normal cystisis (I did the test) that required antibiotics!

    Interestingly, I have developed IBS and I didnt realise the link to IC until I accidentally read this forum.

    Also interestingly I had realised over the years I have a very sensitive body (side effects from drugs and my body expelling an IUD the Gyae insisted I needed).

    The book was called You Don't Have to Live with Cystitis by Dr. Larriane Gillespie. Obviously it was about Interstitial Cystisis but in the 80's it was virtually unheard of.

    Apologies if all this info and outdated but I wanted you to know that through strict diet for around a year or more I managed to heal my bladder and haven't had a recurrance. Also, if you are thinking I can't have been 'that bad' in the first instance, I can tell you I was so bad I couldn't bear it.

    Huge but gentle hugs to those of you who continue to suffer with it. xxxxx
    Last edited by ICNDonna; 01-01-2011, 04:53 PM.

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  • smilesplease
    replied
    Thanks

    Thanks Donna for your help and advice.

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  • smilesplease
    replied
    Thanks

    Thanks for the help with the pools, I will remember that.

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  • LivesintheSun
    replied
    I stopped swimming out of sheer fear of something 'washing' into my urethra and causing an infection- I have worked in a public pool and I know how many 'accidents' kids have. I also stopped having baths and had showers instead, on the advice of ****** ********* who wrote 'Understanding Cystitis'. I did find swimming made my bladder worse and I wouldn't be at all surprised if it was the chlorine as Donna mentioned, though that wasn't the connection I made at the time. The doctor told me that I was either getting repeated bacterial infections or that it might be one very resistant one which kept coming back, and I had no idea my bladder problem might be fungal, so I was bacteria-phobic, I even boiled my underwear, everything had to be sterile, and that precluded swimming. Plus I just didn't feel like it.

    Leave a comment:


  • ICNDonna
    replied
    To start a new thread, first find the forum where you'd like to post; click on the name of the forum and you will find the link to start a new subject.

    To reply to your question, some ICers have a problem with clorinated water --- I know I do. I am okay in the ocean or in a pool that uses something other than clorine (we use Baquacil in our pool).

    Donna

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