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  • My Story- I Found the Key

    I am writing this post because I have now completed exactly a year with no symptoms and I want to share my story, because even if it helps one person that would be fantastic.

    I am 31 now- in my early 20s I had a few episodes of very painful bacterial cystitis after sex. When I hit 25 I started getting cystitis after every single time I had sex, my boyfriend eventually got fed up and left. But the cystitis stayed and got worse. I took many courses of antibiotics and gave up swimming, hiking, camping, and my life became increasingly restricted as I was terrified of more infections as well as limited by the discomfort in my bladder. There were periodic acutes, with blood and terrible pain, and the rest of the time a feeling that my bladder was inflammed, sometimes my urine was cloudy or smelt bad. Urine cultures showed infection but not specific bacteria.

    The cystocopy showed nothing, I was given Macodantin but my body totally rejected it, it made me horribly nauseous, I only managed to take it for 3 days. The doctors were kind of at a dead end with me then, since macrodantin was the best they could offer, apart from the comment 'women like you can't have sex'- thanks.... and what about the rest of the infections?

    So by then I was desperate, and I spent a great deal of time researching bladders. Exactly a year ago I had the great fortune to speak to a knowledgeable nutritionist. She suggested that my bladder problems might be fungal and suggested that I give up all fruit, sugars and refined carbohydrates (white rice, pasta etc) and take a high-dose omega 3 fish oil. I did this and within 2 weeks my bladder was fine, and it has been ever since. If I go off the diet I have a flare up, but as long as I eat carefully I don't even have to think about my bladder, I'm not paranoid about infections, I can even have sex without repercussions (but I always urinate afterwards, just to be sure). Basically, my life has been completely transformed, every time I think how far I've come this year I want to have a party!

    Here is what seems to have happened to me- I am coeliac, and didn't know it for years, hence damage to gut lining (leaky gut- molecules which should stay in the gut can leak into the bloodstream)
    Was on pill for years and lots of antibiotics- good gut flora obliterated.
    Ate healthy diet, but always lots of fruit, and used to drink plenty of alcohol and fruit juices- yeasts and bacteria well-fed, gut overrun with candida/fermenting bacteria.
    Yeast and/or bacteria spills out of gut into bloodstream and into kidneys and bladder causing irritable bladder.

    I still have a lot of hard work to do, mainly healing my gut and rebalancing my hormones. It is slow and boring, and I miss alcohol and fruit, but its so worth it. However, I feel that in my case I have found the 'key' (everything stems from my gut), and I can unravel my other health issues form there.

    Maybe this will be relevant to someone else. A big clue that I had was that when my cystitis was at its worst I had a bout of thrush. I was given anti-fungal drugs for a week and that was the best week my bladder had had for years :-)

    There's a lot of info out there on 'candida' and 'gut fermentation'. Dr. Myhill in the UK has a very informative website (look under 'yeast problems and candida' and 'irritable bladder or allergic bladder'). I'm pretty ticked off that none of my urologists thought of it before, because all the books about candida list 'recurrent cystits' as one of the classic indicators of a candida problem, and I also have most of the other symptoms on the list!

    To everyone I say 'don't give up hope'. I found what worked for me because I searched so much, talked to so many people, eventually one of them was able to help me. If you look for long enough and in enough places you will find your 'key', leave no stone unturned. After my experience I would also say thats its worth looking for the root of the problems, rather than just treating symptoms (although in the short term symptom relief is pretty damned important).

    I wish you all the best.

  • #2
    I'm glad you found a way to control your cystitis. I often wish that I had infections, rather than interstitial cystitis. Fortunately, I have found treatment options that keep my IC well controlled the majority of the time.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Thank you

      Thank you for sharing your story! It is very similar to mine, but I don't think I could have told it as well as you did. I was diagnosed under anesthesia, at the age of 18, as having interstitial cystitis, The cystoscopy showed hunner's ulcers and I was told the bladder was inflamed and the tissue was damaged and considered to be an 8 out of 10 in severity. Like you, I am also able to keep the IC under control by following an anti-candida diet. I also control my symptoms by taking herbs that control bacteria and candida.

      Comment


      • #4
        Thank You!

        Thanks SO much for sharing what gave you relief! I'm sorry you had to go through all that pain, but you sure aren't the only one. I was also pretty dumbfounded by the urologist's lack of good explanation to me. I will read up on what that UK doctor has to say, and keep you guys updated with any success.

        I'm beginning to suspect that the peroxide douching is helping even more than the vinegar. because of this and how good antibiotics make my bladder feel this is at least partly aggravated by bacteria in my vagina. maybe it even contributed to the UTI I had a few months before my IC started last year... I know bacterial vaginosis can cause UTIs. thank goodness ive only had one UTI. It was bad though, i saw blood. I am learning about how very specific hygiene procedures can make UTIs much harder to get. Having another one on top of my present symptoms is a scary thought. I will continue to get to the bottom this and keep everyone posted.

        Comment


        • #5
          Livesinthesun,

          Thank you so much for posting your story.. it sounds exactly like mine and I have been debating whether or not to go on an anti-candida diet! You have given me so much reason to hope for the future!

          Did you notice that your symptoms got a little worse as your body was clearing the candida?

          Comment


          • #6
            Thanks for your replies everyone!

            Gennifer,

            No, it hasn't been like that but I don't think I've cleared the candida from my body. I believe that when the candida reached a certain level or tipping point the bladder symptoms were triggered - I had had other symptoms leading up to the bladder problems beginning - cravings for sugar, alcohol and bread, aching arms and legs, dizzinessa, typical candida-type symptoms I believe . When I started the anti-candida diet the first symptom to subside was the cystitis, thankfully.

            My health however, seems to be affected by a jumble of factors. I'm contending with the celiac, which causes severe symptoms if any gluten sneaks in (which it often does- I live in South America and they often stick flour in foods but don't list it in the ingredients).
            There is the candida, and the diet is pretty damned difficult to stick to. Now that my bladder has calmed down I have less motivation to be quite so strict, but I get feelings of 'unreality', and I'm hypoglycemic, which I suspect is candida related.
            Plus I'm hypothyroid and my hormones are all over the place. I think all of these are and have been linked.

            Sometimes I get fed up with trying to juggle it all and have a 'perfect' diet, and sometimes I go off the rails, suffer the consequences, and pick myself up again. There only really seems to be one path to follow, and thats the path of looking after myself the best I can. I'll get there! So no, I haven't had any die-off symptoms because I haven´t stuck to the diet well enough, just well enough for my bladder to be ok. This new year I'm planning to go hell for leather with natural self-care (including the stone age diet)- I'll see how far it gets me in 6 months.

            Comment


            • #7
              Thank you so much for your respone! I am going to try the yeast free diet in the new year..

              Keep us posted on how your doing!

              Comment


              • #8
                I have a very similar story. I was recently diagnosed with ic in June of 2010. Right before having a bladder lift. My symptoms got 100 times worse immediatly following the potassium test they did to diagnose me. I have suffered with yeast infections for years and then 3 years ago was put on an antibiotic for 7 mos. straight. I think this let the candida multiply and take over my body and following that the bladder symptoms started. I have been on the candida diet for about one year but cheating a lot. I combine the ic diet and candida diet. i feel lots better when i follow it strictly. I was in pain for about 3 mos. straight right after surgery and then slowly by month 4 I almost felt normal. now 6 mos later i have had 3 uti's but my ic.symtoms are very mild. Some days i feel like i am cured but one serving of spaghetti sauce flares me up and i know it is still there. I definetly feel there is a link between yeast and ic. I also have low thyroid. thanks for sharing:

                Comment


                • #9
                  (Note from ICNDonna: The ICN recommends books written by medical professionals, such as the IC Survival Guide by Robert Moldwin or Ending Female Pain by Isa Herrerra PT. The book mentioned in this posting represents one patients opinion and is not, that we are aware of, supported by any IC research studies.)



                  I was diagnosed with IC in August of 2009. I have been taking Elmiron since then and also Utira-C for pain, and also followed the IC diet. However, last summer I read a book by an IC patient, Catherine M. ******, entitled ALONG THE HEALING PATH. She claims to have cured her IC through natural means. One of the things she tried was something called NAET or Nambudripod's Allergy Elimination Technique. I was skeptical that this could help because I have never been allergic to anything. I went to NAET.com to try to find a practictioner near me. I live in Baton Rouge and found an RN in New Iberia who had been trained in the technique. She has given me my life back. I had a very severe case of IC. My first NAET treatment was at the beginning of July, and she treated me for Vitamin C. The treatment is non-invasive, like having accupressure on your spine. Afterwards, I had to avoid all vitamin C for 25 hours. After that, I bought an orange and tried some of the juice and had NO PAIN. I went back to this woman 3 times a week and was treated for all kinds of foods. After each treatment, I could add more foods to my diet. After about ten treatments, I could eat like a normal person again, but still could get a flare from stress or sex. So, she gave me some supplements. I will keep you posted.
                  Last edited by ICNDonna; 12-31-2010, 03:42 AM. Reason: Added comment.

                  Comment


                  • #10
                    I'm glad you found relief from your symptoms.

                    Just a heads up to others reading this post:
                    NAET has been reviewed by Quack Watch and is not considered a valid medical treatment by the scientific community.

                    http://www.quackwatch.org/01Quackery...ergytests.html

                    I would not in good conscience, suggest any IC patient eat or drink citrus fruits, as those are among the top trigger foods provoking IC symptoms - as seen in the 2009 IC diet study surveying hundreds of IC patients.
                    Kadi

                    -------------------------------------------------------------
                    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                    ------------------------------------------------------


                    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                    Source - Pinterest
                    "


                    Current treatments:
                    -IC diet
                    -Elavil 50mg at night
                    -Continuous use birth control pills (4-5 periods/year)
                    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                    -Pyridium if needed,
                    -Pain medicine at bedtime daily, as needed during the day several times per week
                    -Antibiotic when doing an instillation to prevent UTI
                    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                    -Dye Free Benadryl 50 mg at bedtime
                    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                    -Managing stress= VERY important!
                    -Fur therapy: Hugging the cat!

                    Comment


                    • #11
                      Hi all,

                      The whole topic is very interesting.

                      For me, I took ´valid medical treatments´ as far as I could, did everything the doctors told me, and was still in a pretty terrible state, plus with drug side-effects. I'm not anti-medicine at all (I'm from a medical family), but I've got to say that it was a naturopath who got me out of the pickle I was in by suggesting my symptoms were fungal.

                      It was also a naturopath who diagnosed my celiac condiiton, allowing me to lead a normal life- again, the doctors just didn't know what to do with me and they told me so. I was a psychiatric out-patient for most of my teens and twenties, turned out to be my brain reacting to gluten all along.

                      Kadi, I'm sympathetic over your concern about citrus fruits. As for Quackwatch, well I agree that there must be some money-grabbing fraudsters out there, but I also know that Quackwatch has discredited the very people who helped me, and I know for sure that they are careful, intelligent people. I also know that if I hadn't 'shopped around' then I'd be where I was this time last year with my bladder. In the event I tried many things until I found what worked, which happened to be naturopathic nutrition. I believe that being alternative doesn't make a treatment good or bad per se, it depends on the knowledge and exper¡ence of the practictioner, we have to be careful, go on recommendation etc. I did waste a lot of money on alternative treatments that didn't work, but I'm still glad I did because I got there in the end.

                      Really, I feel pretty upset that in my case the doctors didn't pick up the fungal connection, something so simple. I wrote to my urologist to tell him that I've been cured for a year now and how I did it, in case it might be relevant to any other patients, and he wrote back 'call me when you need another appointment', wasn't even interested. How depressing.

                      Comment


                      • #12
                        You can also find information about NAET at http://en.wikipedia.org/wiki/NAET The quackwatch.org site was recommended to me by my physician some years ago. If you have any concerns about its validity, I encourage you to look at the Board of Directors there --- the last time I looked it was a very impressive list.

                        Donna
                        Stay safe


                        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                        Have you checked the ICN Shop?
                        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                        Patient Help: http://www.ic-network.com/patientlinks.html

                        Sub-types https://www.ic-network.com/five-pote...markably-well/

                        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                        [3MG]

                        Anyone who says something is foolproof hasn't met a determined fool

                        Comment


                        • #13
                          I also tried everything my doctors told me to do, but was given no hope of overcoming this disease. I even went to the Mayo Clinic, where I was told that they had no idea what was wrong with me and told me to drink as much lemon juice as I could stand!! Doctors do not know everything. I was VERY skeptical about NAET, but I got amazing results from it. I was not told by my practitioner to drink orange juice. I just decided to put my treatment to the test. Under normal circumstances, even a teaspoon of OJ would send me into a flare. The fact that this did not gave me hope that I was on to something that would help me. I am only posting my experience here because I was
                          SO depressed about having IC and not being able to eat what I wanted, etc, and I am SO excited about finding relief that I just want to shout this from the rooftops and help others with IC to have hope!!!

                          Comment


                          • #14
                            swimming

                            Hi, I am new at this, so I hope I am writing this correctly. Can someone tell me how to start a new question, rather than replying to someone else's?
                            Anyway, I am so happy you have found relief to your pain. It gives us all hope to keep working on our progress. I was wondering why you felt you needed to give up swimming? Was it the chlorine or the sea water? I have similar fears. I was diagnosed with IC in September and have not gone swimming since then. Thanks for any advise and help with the forum.
                            Diagnosed with IC in September 2010, after suffering from chronic UTI's. I suffer from pretty bad insomnia as well.
                            Prosed in the beginning of diagnosis. Cysta- Q helped heal my bladder.
                            Amitriptyline (discontinued now, but was very very helpful), and Macrobid to maintain pain relief and get some sleep. Prelief and Marshmallow Root capsules/ or tea leaves, daily to maintain pain relief.
                            Lyrica and Pristiq to maintain bladder urgency and help with nerve pain and sleep.
                            IC diet is my life now. Stress reduction is a MUST to survive this illness.

                            Comment


                            • #15
                              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
                              Stay safe


                              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                              Have you checked the ICN Shop?
                              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                              Patient Help: http://www.ic-network.com/patientlinks.html

                              Sub-types https://www.ic-network.com/five-pote...markably-well/

                              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                              [3MG]

                              Anyone who says something is foolproof hasn't met a determined fool

                              Comment

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