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Possible IC?

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  • Possible IC?

    I have been reading this forum to see if anyone has had anything similar to me and some do and don't but it seems everyone's symptoms vary anyway!

    It all started back in October. I woke up one morning with a strange feeling in my bladder and urethra. I thought I was getting a UTI. Just waiting for the burning to start. It never did. I just had this pain right above my pubic bone which I believed to be my bladder. Its not a sharp pain more of the pain you feel when you have held your bladder for a very very long time. I also started waking at night to use the bathroom to relieve this feeling. I use to never wake at night to pee.

    Anyway I finally got to the doctor about 2 weeks after taking a home UTI test. It only came back positive for Leukocytes(sp?) So I went. The in office test came back negative but I had dark urine. When she pressed on my bladder from the outside it felt as if she was pressing on a full bladder yet I just peed! She sent me home and told me that she was sending it out to the lab. A week later it came back slightly positive for group b strep and she put me on amoxicillin. 7 days later I did not feel better and called back and she put me on Bactrim which made me sick. At this point I was in the middle of a move. So we move and a few weeks later I find a doctor and go. Same thing, do a test and again it comes back positive for white blood cells. At this point I also noticed some mucus in my urine which he said is from the infection. He put me on macrobid and sent it out to the lab. The macrobid actually got me to sleep until like 5am instead of the 1:30-2 am usual waked up. Again it came back slightly positive for strep b. But my doctor was not convinced strep b was causing this UTI or that it was even a UTI. I go on more amoxicillin.

    I am not feeling better and sick of these antibiotics. Yet I have good days and bad. I feel like I lost the normal sensation of having to pee. Right away it comes on as a painful full bladder. I always wake at night and if I lay on my side I have to get up more often. Laying on my back seems best. During the day on a good day I wont have any pain yet I still will get that full feeling at night and have to wake. On a bad I am in constant pain and even peeing does not usually make it much better. Sitting to long makes my whole pelvic area hurt. One time I thought my insides were going to fall out and at that point I thought maybe it was a pelvic floor thing.

    Anyway my GP thought it was a gyno thing. So I went- not a fan she was a little out there. Anyway it was the most painful exam I ever had. When she was poking around in there it just felt like I had a full bladder the whole time and I did not as I just had peed. She said everything seemed to be ok but did not really listen to my complaints about my bladder. She did a test of the urine in her office and again leukocytes were there, my ph was off and there were ketones. I have never heard of these being off before so this was new. She put me on 10 days of macrobid and sent it off to the lab. I am on that now and does not seem to be helping. Maybe the first day or two I felt a little better but yesterday was really bad. I also so mucus again. Does anyone else have that??

    Other symptoms- I do not have that urgency that if I dont make it to the bathroom I am going to have an accident. I am going a little bit more than normal but that all depends on how much I drink. Usually a lot of pee comes out though. On a bad day of pain I will go much more hoping to get some relief and on these days usually not too much comes out.

    Oh and sex is slightly painful. It is almost as I can feel my urethra in there. If that makes sense at all.

    I am waiting for the lab results then hopefully can get in to see a Urologist. I am scared to go though, all these tests sound painful!! Heard bad things about the cysto!!

    Thank you if you have read all of this! Any insight?

    If this is relevant- I am 28 yr old female with 2 kids and no prior history of UTI problems. I have had two. One over 10 yrs ago and another 4-5 yrs ago while pregnant. Both with the burning during urination and cleared up asap on antibiotics.

  • #2
    Welcome, you are right in the fact we are all different, I don't feel like I'm going to have an accident when I need to urinate either, i do or did urinate up to 20 times a day and several time at night. My urine always shows a trace of blood but all other test we're normal results. Pain for me was and is after I urinate, after sex it's not a sharp pain it's a nagging ache but we all know that can be as bad.

    If your insurance allows you to see a urologist without a referral you may want to go ahead and make an appt. he will need to rule out other things that can be causing your pain. IC sometimes takes a while to dx.

    I do think you should go ahead a start the IC diet it has helped me. Sorry your in pain and hope you find relief soon.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily


    • #3
      If you don't get an answer soon, my suggestion is to see a urologist.

      It does sound like IC is a possibility.

      Stay safe

      Elmiron Eye Disease Information Center -
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      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:

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      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


      • #4
        An Hydrodistention of the bladder while knocked out was how they found my IC. I did not want anything done while I was aware and in pain. They took pictures and wow it was bad. Looked like road-kill. I started on the diet right away plus Elmiron. Five years later I am in an OK place. That is just my story. Only your Doctor can give you correct advice for you. Keep us posted. Hope you get help soon. Hugs, Ziggy


        • #5
          I do have to have a referral so I am waiting for the urinalysis to come back and go from there.

          Ziggy - were you in bad pain? I feel like mine is not so bad after reading this forum but it is there and I do have bad days.

          With the diet - before you started did you notice some foods made things worse?

          I do feel that sitting for a long time makes it worse.


          • #6
            I was not in real bad pain but was getting up 20 + times a night to use the bathroom only to void a teaspoon. My memory tells me it seemed like the worst UTI I ever had but nothing showed up in a urine test. My Doctor who knows me well was very upset. Thank GOD for him. He has helped me so much. I did have some pain and the diet did help a lot with that. I googled IC and found this site. It has been a great help for me. Hugs & Hope. Ziggy