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    My name is Kate. I have not yet been diagnosed, but feel pretty confident that in fact I do have IC. I had my first kidney stone in 1998. I did not have one again or so I thought until January of 2008 when I passed 2 of them while I was pregnant. The pain was mainly in my bladder so...after passing them and having the pain reoccur in my bladder I assumed I was passing more stones. This pain would flare up every 6 months or so to the point where I would go in and sure enough I would have a few stones, however I rarely had flank pain, it was always in my bladder. i finally got tired of going and the doc continued to fill my pain medication as we figured it was just stones....well fast forward to Feb of 2011 and I googled my bladder is on fire and I found you all. I started reading about the pain you all were feeling and I was like hey that is me. So I made another doc apt. and they referred me to a urologist and gyn. to rule out endometriosis. I went to the urologist in April and did a 24 hour catch where they discovered my potassium was low or off so they prescribed potassium citrate...I was already put on detrol LA for the IC possibility. So I start taking my potassium and my flare ups get worse....then I realize that potassium is a test for I stopped it and the pain decreased then I started again and pain worsened...I did this 2 more times with the same result and then I called my doc. I have an appointment today with a new urologist. I am in a damned if I do damned if I don't scenario as if I don't take the pottasium my stones will come back and if I do my bladder hurts. I just want a day where I dont feel drugged and can be pain free. I am hoping to get some answers today...ha ha. These are my symptoms...constant bladder pain, sometimes burning..urge to pee, but know I don't have to go, pernium pain, some thigh pain, increased during period or high stress, lots of strawberries, orange juice or strong coffee.

    I am so glad I found this group.

  • #2
    I hope that you will be helped today. Will be praying for you as you go through the next few weeks. However, as you begin to work things out - please look at the IC diet. I have found this diet to be very helpful. You can find it on this website.


    Current Meds:
    1 Elmiron 100mg 3x a day
    1 Cimetidine 300mg 2x a day
    4 Gabapentin 300mg 3x a day (3600mg)
    1 - 2 Atarax 25mg at bedtime
    1 baclofen 10mg 3x a day as needed
    200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
    2 belladonna and opium suppositories as needed for pain daily.
    Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

    I have tried but failed -
    lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .


    • #3
      Let us know what the doc's suggestion is regarding the potassium. I can only eat so many potatoes(too much starch) and spinach. It was so easy before when I had my banana and soy yogurt every morning. Now I'm not sure if I'm getting enough potassium.


      • #4

        YOU ARE IN THE RIGHT PLACE! it will be a lifesaver
        Ps. Potassium citrate sounds like a sure fire way to flare IC! Anyone else know about this? Sounds like torture.
        Yes, please stay away from coffee and citrus and tomatoes! Wine is very acidic too. I know BOO
        Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS


        • #5
          Hello everyone...!
          I am new to the forum and just wanted to say hi to everyone...... hoping to get some good and useful info relating to weight loss and health problems....I look forward to seeing what this forum can help me with and what I can help others with...Have a good day...!
          Los Angeles SEO Services


          • #6
            Great attitude! This is the best source for IC patients and their loved ones. I have a lot of trouble gaining weight. I think because I took so many meds and now I don't, it decreased my weight a lot. Plus, I now exercise for natural therapy and really stick to unprocessed, whole foods. Also, cutting out alcohol definitely caused weight loss. It's hard to lose weight taking meds, espec ones like narcotics or antidepressants that cause constipation for many people. I was a bloated mess a few years ago taking over 50 pills a day. I gradually weaned off most and started physical therapy, yoga, acupuncture, massage, chiropractic, and emotional therapy to deal with anxiety and depression. I can now take more cardio and weight classes and find that beta endorphins help reduce my symptoms. I highly recommend anything holistic you can do. Start slow and work up. It's a full time job for me to combat the severity of my IC between cooking, working out, and therapy. I just hated all those meds and side effects. I take under 10 pills per day now. I would say exercise is keeping me from being a vegetable that only gets up to pee through a catheter every 15 min!
            Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS


            • #7
              to the IC Network. I also am glad you found us.

              Stay safe

              Elmiron Eye Disease Information Center -
              Elmiron Eye Disease Fact Sheet (Downloadable) -

              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:


              Diet list:

              AUA Guidelines:

              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.

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


              • #8
                Hey! I wanted to comment and let you know that I also had bad flares during my period. My gyno and I worked something out and now the flare I have from my periods is short and minimal. So, I am glad you are going to a gyno as well as a uro. Whether or not you end up having endo, you can ask about how to reduce your flare from your periods.

                Also, the uro will help you out too. IC can be overwhelming but there are a lot of treatments out there to try. Sounds like a horrible catch 22 with the pottasium, no win either way! Pottasium causes me to flare too.
                Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

                24 yo F

                I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.


                • #9
                  Many years ago prediganoses, I did the 24 hour catch too, it showed my postsium was too high.

                  My Dr. figured it was from the bottled water i was drinking. At tthe time my bladder was in constant pain.

                  Recent tests have showedmy postsium is fine, the last test showed low sodium, which could have been from haveing a recent case of the stomach flu, and or fromme drinking lots of water, my Dr. gave me a IV bag to bring up my sodium level this did help me feel better.

                  I find with some meds if I take them by injection they don't bother my bladder, but orally they do.

                  I take Vit B shots once a week, vit B pills will make me flare, I also get shots of ketoralac a NSAID, the shot helps my pain but in a pill it will make my bladder burn in 20 mins.

                  Maybe you can get the potsium in shots, and maybe it will be processed in a different way, and not bother your bladder.

                  Hope your app went well, let us know what your Dr. figures.

                  My are with you all. May you all find a way to peace and joy in your lives.


                  • #10
                    Thanks everyone for the warm welcome. I met with a great doc. She specializes in female uro! She was so great and supportive. They are actually going to do a cysto finally! She gave me phenazopyrid and told me to stop the detrol la. I read the IC diet and have realized I am going to have to make some changes...bye bye diet coke. Coffee doesn't bother me if I stay away from the cappochino at Holiday. I am so glad I found this is hard when people don't understand how much pain you are in and until yesterday the only relief was vicodin which makes me foggy to say the least. I have a 5 year old and 3 year old not to mention a husband who wants me to be active and feeling well. I am hoping I am finally on the path to figuring this thing out after 3 years of pain.


                    • #11
                      Cysto really hurt me so I hope it doesn't do that to you. However, I also made the unfortunate mistake of having DMSO instill at sane time per dr suggestion. At the time I didn't know better. It could have been the DMSO. anyway, PFD totally locked up my pelvic floor, and I had severe spasmodic pain for months, couldn't pee on my own without cath, and had to go to biofeedback therapy and pain specialist for meds. I don't think this is common, but it can happen. I should have done better patient research beforehand, but I was clueless about IC back then and had not seen this site yet! Best of luck to you. Keep reading patient accounts. We are all different, but you can always relate to someone here and there depending on severity. It sounds like you have a good dr and that is great! Major plus! Keep eating fresh foods and exercising when you can. It really works wonders and keeps you from needing pain meds as often. They don't call it a natural high for nothing! Ha
                      Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS


                      • #12
                        It doesn't take too long for the fuzzy head feeling to go away. To start with you could try 1/2 the dose, cut the pill in 1/2 (before doing tis check with Pharmacist that it is okay o cut, some pills are time released and not ment to be cut) or take one if you are on 2, if it doesn't help the pain you can always take the other 1/2.

                        It is just way that might help with the fuzzy head, still be able to function and be in less pain at the same time.

                        The high feelings go away pretty fast, but you still get the want effect of pain relief. This is why people in chronic pain can stay on the same doseage for long periods but people taking it to get high, up the doseage at a much faster rate.

                        Or at least this is my understanding.

                        Good Luck MG
                        My are with you all. May you all find a way to peace and joy in your lives.


                        • #13
                          Thanks MG. I really only feel foggy when I take a pill and when I am not on it I am fine. I have gotten pretty good at functioning on them (kind of scary actually) but that is on 1/2 or 1 pill...if I have to take 2 forget about it...I am down for the count knocked out sleeping. The prydium is doing pretty good though so haven't had to take anything lately. hooray