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  • #1

    Question about Interstital Cystitis

    Hello. I thought that I was fighting a UTI for 4 months than my primary doctor finally reffered me to a urologist The urologist thought that I wasn't on enough meds for the UTI, that they weren't strong enough and she said my bladder was so inflammed. Well I took the meds she gave me and ws still hurting when I went back to her for my follow up, I was still having the same syptoms and still hurting She said the urine sample came bak normal. So she said that she feels that I have Interstitial Cystitis, which I have never heard of. Anyhow she gave me a diary and told me to wite down how many times I go to the bathroom a day and what I eat. I was told to eat nrmal for the first week, than week 2 I was to following this IC diet that she gave me, the thrid week I am to continue the IC diet and add vesicare 5mg once a day to it. I have done that havent seen any changes. I go back on the 18th of Aug to follow up and go over the diary and she said we might would have to change meds. I also have to start some electrical stimulation treatments once a week for 6 weeks. She also as me taking prelif.

    I was just curious to how anyone else has been dignosed with this? Does this sound normal without testing? I have done alot of reading on it and I do have all the syptoms of it. I usually go to the bathroom 40 or plus times a day. And at night I get up at least 4 times, I never get a good nights sleep.

    It has been very hard dealing with all this. The diet is hard is so hard. I have already lost 8lbs and just started the IC diet Monday. I feel hungry all the time, but I guess you just get used to it.

    Thanks Everyone
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  • #2
    According to the new AUA guidelines you can be diagnosed on symptoms alone and if something else is found in the meantime they suggest changing the diagnosis. It seems though that there are still drs. who use their own diagnostic criteria. It can take a while to see a change in symptoms when you go on the diet. It took me a few months to see an improvement with diet and even though I have been pretty much symptom free for a while now I still adhere to the diet for the main bladder offenders. The diet can be difficult but you may find that some foods that are on the no no list may be ok for you. Everyone is different in what they can tolerate. I can have a couple home grown tomatoes but some people can't even have one. So it varies from person to person.

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    • #3
      IC Diet

      Following the IC diet was very challenging and difficult at first. I could not wrap my mind around my "new normal." However, the recipe section in this forum is great. I discovered new recipes for every meal of the day. Also, I could ask questions and receive the most wonderful feedback.


      From my experience, the diet does get easier over time. The key word for me is time. I have found that I can only do the best I can today, reach out for help, and allow time to become my friend.


      When I first joined, so many would post such encouraging words to help me get through the day. I hung on to the hope that if things got better for them then there was a possibility that things could get better for me. Hold on to your Hope. Many, many have learned to live with IC and have productive lives. Have the best day you possibly can.

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      • #4
        Thanks for all the information. Have either of you had to have the Electrical Stimulation done?? I'm scared that will hurt.

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        • #5
          The second uro I saw recommended the PTN stimulation and said he had a lot of success with it. He was treating me as if I had OAB which I don't and frequency was not my main complaint so I didn't have it done. Another male uro who was obviously not listening - sigh---. He explained that it was similar to what you feel in acupuncture treatments, so it didn't sound as though it would be painful.

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          • #6
            Unfortunately not everyone with IC have food triggers so you may not see improvement from that alone....although I agree with the previous post that you will need to give it a little time. If you have a PFD it is doubtful that diet alone will help and most of us do need some sort of med to get this under control. For me the only thing that worked was a med used for fibromyalgia.

            I never did the nerve stimulation that you listed but I did try tibial nerve stimulation and I MUST WARN "IT MADE EVERYTHING WORSE!!" Prior to TNS I never had pain....Just frequency, urge and a false sensation after I had pain like I never imagined!! Before trying anything.....Do your research. Ask a million questions and make sure you are aware of the risks and side affects. But then again there are risks and side affects to everything and if none of us never tried anything knew we would never feel better.....

            Best of luck!!

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            • #7
              different categories IC

              I think since it can be a long road aside from the diet it is worth while to work with your doctor and try to categorize your IC. If you have pelvic tightness then Physical therapy and drugs like valium, valium suppositories or other anti-spasmotics (like in prosed/ds) will help. If you are allergic then anti-histamine type drugs will help, if you getting worse with a certain times of the month then maybe hormones are contributing, but I'm not sure how that is changed. If you think it is a lingering low grade e-coli infection that goes undectected then maybe taking d-mannose (you can research that - helps only a few with IC)could help. Then there is Elmiron, but figuring out how your IC is unique is important. Doctors don't always think along those lines.
              I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

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              • #8
                It sounds like you have found a doctor who is familiar with IC and will work with you to help you feel better. There is more than one diet list out there --- you'll find a link to the latest food list in my signature below. If you concentrate on the bladder friendly list, you'll find there are plenty of foods you can eat. I know it can be a challenge at first but it is definitely worth the effort.

                Sending healing thoughts,
                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

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