Interstitial cystitis

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I have had an irritated bladder for 6 years, but they can't find anything wrong, I keep getting cystitis I feel better taking antibiotics but as soon as I stop it comes back again. Does anyone else have this?

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  • Posted

    Hi, I feel terrible you've been seeing docs for six years and cannot get a proper diagnosis. It must be awful for you. Have you been seeing a specialist, a urologist? Also, taking lots of antibiotics are just not good for you. I hope you are taking a good probiotic every day. My gyn has told me that having IC cannot be helped with antibiotics. You need a certain number of bacteria in the urine to meet that level of infection. I believe she said it was something like 100,000 units...I wasn't even close to that number so it was not considered a true infection. I find, for me, the right diet helps...keeping to a more alkaline diet and avoiding the "bad" foods and beverages, drinking lots of water and very often, exercise, mostly pilates. If you haven't yet, perhaps you might try altering your diet and then see if that's helped. Best wishes..I know it's painful. A flare can come on at any time no matter how much care you take. It sucks royally. 

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    • Posted

      Yes I have seen urologists, they say they can't find anything wrong with the bladder. I do eat healthy and exercise as well. I keep urine strips at home because I can't tell the difference always if it's cystitis or not. I am just getting over a bout of cystitis, but as my bladder is always irritated it is very difficult. I don't always have to keep going to pass urine as well. So I am not sure if I have this or not. I find ice packs help a lot as well.....

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    • Posted

      The urologists can't find anything wrong with your bladder yet you continue to suffer. I don't understand. Can you request different docs? I realize that may sound crazy but to not be able to help you in all this time just mystifies me. It seems that you are doing all of the correct things, including diet. When you say you eat healthy...are you aware that with IC there are certain foods that are considered acidic and meant to be avoided?  If you try to keep off those foods and beverages perhaps that can help? In addition, has your urologist given you a cystoscope? This is a mild procedure in which a thin tube with a camera and light on the end is inserted through your urethra and into your bladder so the doctor can visualize the inside of your bladder. Your urethra is the tube that carries urine out of your bladder. I would imagine if your docs say they can't find nothing wrong that you may have already had this test. Just wondering why they can't find the issue. Just so you know, with my symptoms I only feel that urgency when I am having a flare. For me, that can happen from drinking caffeine (I haven't given up my coffee yet), as well as the other foods deemed too acidic (like tomatoes...even wine). Once I am in a flare, I get pelvic pain which can go from mild to severe. I find that if I drink tons of distilled water it helps a lot as does exercise (most times). Sometimes the pelvic pain feels like bad cramps.  And when I have to go to the bathroom I can feel pressure before, during and even after urinating. Since this began with me about nine months ago now, I find if I stick with the correct foods, water, etc., I can manage the flares a bit better. In the beginning of this mess I was having horrible pain all the time. Anyway, I'm sorry I can't be of more help. Your specialists need to be able to get you correctly diagnosed...that's their job..and not tell you that they don't know. If a specialist isn't able to diagnose correctly within a six month period perhaps it's time to seek a different doc. I hope you feel better.

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    • Posted

      I have had a camera put in the bladder, and also seen 3 different urologists, the only thing is I do have osteoarthritis in my back, and they said it could be that what is irritating the bladder. I have always suffered with cystitis but it's getting more often now. And when I don't have an infection it still feels like I have. I know all about the different foods and not to eat anything to acidic. Thanks anyway

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  • Posted

    I too suffer regular bouts of cystitis and have been given a low dose of Trimethoprim to take after sex and when I feel irritated I have found this helps a lot. It was also recommended to me to buy cystitis the complete self help guide by Angela Kilmartin in one of these threads and that was really good. I read it all in one sitting it gives a lot of tips to manage and help avoid the frequency of the cystitis and it was only a couple of pound so well worth a read.

    Hope you get some relief from this soon

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  • Posted

    I hope you feel better but

    I was having a lot of uti symptoms but no bacteria and my doctor said it could be cystitis. He recommends that I take cranberry supplements daily

    Have you had any hematuria?

    Have you had a cystoscopy?

    Scan or ultrasounds?

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    • Posted

      Hi, I read your response and was curious to ask if you have been taking the cranberry supplements? When I was diagnosed my gyn gave me a list of foods to avoid and one of them is cranberries. I'm just curious to see if the supplements help you at all.

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    • Posted

      No I haven't started yet, not sure if I will. I know lots of people who have the same as me and all they say is you have an over active bladder. What they mean is the age thing..

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    • Posted

      Hi...I know overactive bladder does seem to mostly hit women in middle age. However, IC can affect women (and some men) at any age. I've responded to women on this forum as young as 20. Some women who have written with overactive bladders have started to do self catherization. It saves them from having to go to the doctor so frequently and is not known as having interstitial cystitis,

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  • Posted

    New to this site. Over the last 9months several uti cystitis.had Mri ct scans cystoscopy flexy. Yesterday had ridid cystoscopy and a catheter placed in for one week to see if less painfull b4 another specialized scan. Omg on times i wish i was dead than have this pain. Lyn I feel ur pain i am sorry to hear u have been 6yrs with no diagnosis. And I am complaining about 9months x
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