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20 years of this..

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  • 20 years of this..

    Here is my story. I have had UTI's since I was two. The frequency has increased as I got older especially in the past two year where I have them about every month or every other month. Now I never ever feel 100%. There is always some level of discomfort when I pee.I've tried all sorts of Anti Biotics: Cipro, Levaquin, Augmetin, Macrobid.. I've tried herbs, cranberry pills and juice and nothing works. It will help for a few days and then come back.

    Intense pain, dark colored, cloudy and stinky urine occur monthly. There has been two or three times where I supposedly don't have an infection. Every single time though they found small amounts of blood or protein in my urine. Sometimes I have a dull back pain. There has also been times where I've been randomly tested with no horrible symtoms and have had a UTI as well. Waking up in the middle of the night in tears because it hurts so bad is not un common for me.

    I've had CT scans, Ultra sounds and a voiding cystogram which showed a little flare in my bladder lining and I also withheld a little urine. I have also had Urodynamics testing done measuring the activity of my bladder. Most things came back pretty normal. I had a cystoscopy done and he did stretch my urethra. (I had to wear a HUGE catheter for 3 days)

    After that I felt good for 2 weeks and then I started having symptoms again. I keep going back to the doctor and he keeps giving me anti biotics more and more when they make me sick and I throw them up half of the time. I can't take pills anymore. He recently gave me a liquid anti biotic which I have never taken but I am afraid to try. I stopped drinking soda for a long time and that didn't work... I would only drink diet caffine free sprite (with splenda) or vitamin water and tea sometimes.

    I kind of think that its because my body has built a resistance to it because I've had to go threw this for 20 years... (I'm only 21 FYI) What can a doctor do about that? I tell him the antibiotics are not working and he gives me something else and says come back in a month.

    I can't live like this. Its ruining my life especially my sex life.. My Fiance has a really high sex drive and its really getting to us. It interfere's with work constantly... I don't ride (horses) as much anymore because #1 it hurts #2 I don't have the energy because it takes alot out of me. I feel so hopeless and it brings me to tears just thinking about it.

    I guess my main question is has anyone done something else that I havn't done yet? Been through a test that I havn't been throught yet? I've tried to change my diet but there seems to be a certain diet for people with IC and ones for UTI.. I'm not sure which one I should go with... Is it possible to have both frequent UTI's and cystitis?

  • #2

    Another horse person here! I'm so sorry. I think I've been in a depression for years due to not being able to ride. That was my whole life! Riding was more important than walking to me.

    I think Splenda actually aggravates flares because it is an excitotoxin. I don't know that for certain but it sure seems to be implicated in alot of things.


    • #3
      change your diet to the ic diet. Drink only water for now. no cranberry juice, no vita water, nothing. you need to start healing your bladder somewhat. I had a bladder urine cancer test, ultrasound, and catscan. but you can't see ic in that way, just please start the ic diet as I did 7 months ago.
      not yet dx with ic-diagnosing myself as of aug 2006
      diagnosed ic-october 5 2006(huh just what I thought)

      cod liver oil (for vitamins a and d)
      bladder is not getting worse but maybe better
      diagnosed ibs-september 27, 2006
      don't know if it's ibs or some other underlining condition. hair loss, weight loss, constipation
      all this even though I eat.
      Mercury toxicity with Candida Albicans
      Realy toxic and sick
      Dental almagams removal and chelation for heavy metal toxins and candida cleansing as soon as fillings are out
      had catscan, ultrasound, colonoscopy
      Matthew 21 verse 22: jesus quotes"and all the things you ask in prayer, having faith, you will receive."

      I eat to live, not live to eat.


      • #4
        It does sound as if it might be time to bring in some information about IC (if you can print out anything from the internet) to show your doctor, and ask if you might have that. If he says it's possible, he will probably send you to a Urologist again.

        In order to diagnose you as having IC, the uro would need to rule out all other possibilities - kidney stones, infection, etc. - and then record your symptoms, and possibly do either a cystoscopy/hydrodistention under anesthesia, or a potassium sensitivity test. There are a few doctors (the minority) who diagnose based on symptoms alone, but the vast majority of doctors use one of those two tests.

        What you are feeling right now is completely normal, and expected. You are scared this might not ever go away, and your sense of well-being is taken away when you have bladder pain.

        The good news is, if it IS IC, there are many remedies for it, and most IC'ers feel good most of the time, once they find the remedy or combo of remedies that work best for them. Sometimes it may take a bit of patience to find the right combination, but you've been dealing with this for 20 years now - if it takes another year to get the combination of drugs just right, you can do it standing on your head! I know it's hard, though.

        Right now you are going through the very worst of it - the time before diagnosis. It will get better once you are diagnosed, and treatment starts.

        It's an excellent idea to drink only water at this time - I don't know about other IC'ers, but any artificial sweetener, including Splenda, really kills my bladder.

        When you go back to your doctor, you might even want to ask him if any medicines that help with pain, such as Elavil (it's not a narcotic, it's an old-style antidepressant that, in extremely small doses - much lower than what they use for antidepressant effect - "turns down" the pain signals in your brain so that you don't experience nearly as much pain. In fact most IC'ers who do well on Elavil, report no pain at all on it!) or if you can't tolerate Elavil (are allergic to it, etc.) maybe a non-narcotic analgesic such as tramadol.

        Everything I read says that aspirin, motrin and tylenol are good for treating the pain of IC, but I personally don't find that to be true, and I know there are a lot of other IC'ers here who also flare with those OTC pain meds. So I don't know what IC'er out there gets better with those meds rather than worse, but I'd sure like to meet him/her.

        It's very hard to have a disease like this so young, and to have this kind of pain to deal with. But please go back to your doctor, and ask if it might possibly be IC, and see if a uro can do a more complete examination of you to see if it might be IC.

        It's very possible to have both UTI's and IC at the same time! I get UTI's pretty often, in fact, with IC - I never used to, but the IC seems to make my bladder less able to fend off the e-coli which naturally are found in the tissues near the urethra, and which love to climb up the urethra in search of a warm cozy home.

        Many of us find that either heat or cold help us with our symptoms temporarily. You know those little heating pad things you can buy at the store, the ones that you attach to your body? Well, one idea would be to buy one of those, attach it to your underwear (so it would press against your urethral area) and see if that helps relieve your pain so you can function during the day. Just make sure you aren't burning yourself - if it feels uncomfortably hot, it's probably too hot to be safe.

        I like a hot water bottle for night, myself, when I'm flaring. Generally, hot water from the tap is hot enough, you don't want to burn yourself. I place it between my legs because that's how I get my best pain relief, but you might find more relief with it against your lower back, or your tummy where the bladder is. It's kind of an individual thing.

        Don't be scared - everything will be okay, you just have to be diagnosed is all - it gets better once that happens, I promise. And maybe your doctor will let you try a very small dose of Elavil or something similar, while you are waiting to be diagnosed, to see if that helps with your pain and allows you to get some sleep at night. (It makes you kind of drowsy, especially at first, so it's best to use caution with it - don't take it and then drive somewhere until you are very used to the effects of this med.)

        Blessings and hugs,


        • #5
          to the IC Network.

          It does sound like interstitial cystitis is a possibility for you. And if you aren't having cultures done to confirm infections, it's possible that it's the anti-inflammatory effects of the antibiotics that is helping you feel better while you're taking them.

          Are you seeing a urologist? If not, I think that would be a good idea. They are usually the ones who are best able to diagnose and treat IC.

          One thing you might try is following the IC diet closely (You'll find it in the Patient Handbook at ) --- and I would, as Lori suggests, avoid all drinks except water for a while. Be sure you are drinking at least six to eight cups of water every day. And if you live in an area where the water is heavily clorinated, you might want to try drinking bottled spring water to see if that helps. You'll want to avoid all sodas, including the Sprite --- and tea is a problem for most people with IC.

          I'm okay with Splenda, but I do avoid aspartame.

          Sending warm welcoming hugs,
          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


          • #6
            Hi there - Don't be scared. I was so scared in the beginning. I was diagnosed in August of last year. My family and the doctors at first thought it was all in my head! BUT my sister read everything about IC sat my family down and told them it does exist and she does have a problem! My family, husband and freinds are very supportive. I have been taking Elmiron, Elavil, neurontin for almost 5 months now. I woke up one morning and said "WOW" I feel different....I feel great! I am so strict with the IC diet. No coffee, soda, chocolate and smoking. Stay away from spicy foods but it helped me so much. Find a urologist that is educated with IC. I went to 3 that knew nothing! They diagnosed me with 3 different things. I wanted to blow my brians out. I found a great urologist that saved me. I love him to death along with my pain management guy! Hang in there.,Once you find a combo of meds that work for you. You will be able to function again! and alot of praying...I hope you feel better soon..Hugs..Nazareen


            • #7
              I also ride horses and have found that I do get more tired that I used to, but I still try to ride about 3-4 times per week. It takes my mind off my bladder at least for a while.


              • #8
                I have been seeing a urologist since october. Hes all I see now. He did the cysto on me.. it was weird but 2 days after the cath was out (because I had my urethra stretched) I felt 99% and my boyfriend and I went at it for like 2 weeks almost because I had energy for once and then it came back.

                He keeps putting me on a different anti biotic every month. They make me sick.. All these pills make me sick!!! What am I going to do if I can't take these pills?

                What confuses me is for UTI's you want acidic foods and IC your suppose to go alkaline. How can you tell the difference and know which diet to try?

                I've changed my diet significantly in the past week.. nothing but fruits and all day I drink water with sugarfree crystal light because I don't like water. Thats another thing...Everything on that diet list is hardly edible! What person eats alfalfa? That diet is soo rediculous and is hardly what I would call balanced. The only meat on there is chicken and everything else is basically grass. Not to mention all the fruits and stuff I have been eating has really upset stomach, I feel pregnant I'm so bloated and I can't stop belching. How do you guys deal with that?

                I think its sooo unfair that we have to live like this while everyone else gets to drink as much Dr. Pepper as they want (my favorite thing in the world) and I can't have ANY. Walking on eggshells is no way to live your life and it is quite frankly pissing me off. *sorry just had to vent a little! :o)


                • #9
                  If you do have IC, the crystal light could be one of the things that's really bothering your bladder. Most fruits can be a problem, but I'ave never seen alfalfa on an IC diet. I'm looking at a food list and the meats listed include, beef, fish, lamb, port, shellfish, shrimp, turkey, and veal, as well as the chicken. Honestly --- it's not bad at all once you get started on it --- and it's so worth it.

                  I have found a drink that I do well with: Aquafina flavor splash. I get it at Walmart. It might not be okay for all ICers, but I do fine with it.

                  When I first discovered foods and drinks could be increasing my IC pain, I too was really angry, but once I started feeling better I decided it wasn't so bad. I think about it as challenge now. I'm always looking for different ways to prepare foods.

                  Sending encouraging hugs,
                  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


                  • #10
                    When I was first diagnosed, I went through a lot of the frustration that you are going through about the diet. I am a true "foodie" and I didn't want to give up anything. I encourage you to try to stay dedicated to the diet for awhile, though. Eventually you can try weaning yourself back on to foods. There are a lot of things that I find I can eat in small amounts when my IC is under control.... including some sodas.

                    When I was first diagnosed, I also made an appointment with a nutritionist to see how I could have the most balanced diet possible within the perimeters of the diet. She suggested eating spinach and green peppers because they are both very high in nutrients and generally IC friendly. Also, she put me on pedialite. That is a drink for babies who are somewhat dehydrated. It is very gentle, but also VERY good for you. I encourage you to look into it, it helped keep me feeling healthy when I was first adjusting to the diet.

                    Finally, if you feel that unhealthy on the diet, I encourage you to also see a nutritionist. Mine was exceedingly helpful and encouraging. I know its another "doctor" to add to the list, but it was only one visit and she really helped me out.

                    Good luck!


                    • #11
                      Hi - I'm no expert but if you think that you are still having undiagnosed e-coli UTI's then try that d-mannose (available online). You can research it. It may not help, but I don't think that it has hurt anyone. I think some percentage of people with IC actually have some weird infections. I am studying herbalism and my herbal teacher thinks he has cured some people by giving them large doses of goldenseal. (You need a trained practioner for that type of thing). Maybe those people had infections instead of really having IC. I don't know. There is much written on this board about antibiotics and IC. You might be interested in that because you've been through so much with them. I would definately stay away from tea and any artificial sweetners. Some people like to drink almond milk or alkaline water (like Evian). If you find a bland diet that agrees with you, then you can test the different foods to see what bothers you. Some people can't have any tomato products, but I can. We are all different. Good luck.
                      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.


                      • #12
                        It might be a good idea to change doctors, so you can get a definite diagnosis. If you don't know what you are dealing with exactly, then it is extremely hard to formulate a therapy. Doctors will not say, "I don't know" instead they keep treating your or act like they know what they are doing. I would do some research on the best medical center in your area, perhaps you will have to travel to find the right doctor. I am sorry you have suffered for so long and being so young! The ICN message board is a great source of support whether you have IC or another condition.

                        Best wishes,


                        • #13
                          HI! Sorry to hear you are going through SO much with the IC symptoms. I've had years of UTI's also....some showed positive tests and some neg....but my IC specialist puts me on 500mg Cipro for 3-5 always helps.
                          The IC diet isn't easy....and you don't have to eat But stay away from all drinks....water is the only thing that does make my bladder hurt. You have to stay away from cirtrus, asorbic acid (which is in everything these days!) fake sugars (also in everything these days!), night shade foods are a sure fire flare, and of course......caffeine, chocolate, carbonation, spicy foods.
                          You might find you can tolerate some of these things later on......but right now......stick with the diet and you'll see how much it'll help you....Good luck! Roxie

                          Double Spinal Cord Stimulator surgery 8/09
                          Unsuccessful MiniArc sling surgery 12/07
                          Dx'd Hypothyroid
                          Dx'd Chronic Axonal Neuropathy & Myopathy
                          June 2007
                          Dx'd IC May 2006 (after suffering for 25+ yrs!)
                          First Cysto 1979
                          First Hydro 1981 (Many treatments since then!)
                          Collagin"Durasphere" injections for urethra
                          Gall bladder surgery Aug. 2004
                          Gastric Bypass Dec. 2004
                          Dx'd: Barrett's Esphogus July 2004
                          Dx'd: Vaginal Atrophy 2005
                          Bladder surgery 2000
                          Dx'd: IBS 2000
                          Hysterectomy (fibroids) 1999
                          Laminectomy 1989
                          Dx'd: Degerative Disk Disorder 1989

                          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo: