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Don't know if I have IC or not! Opinions?

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  • Don't know if I have IC or not! Opinions?

    Around Christmas time I was coming back from my moms in tn to my house in la and I had about the hours of the drive left and it was getting dark and it was only me and my LO so I thought well I dont really get out to go to the bathroom since it is so dark, so I held my urine and when I got home and finally used the bathroom I felt like I was on fire, and I just thought great, uti! Well to make a long story short, lets fast forward I went to the doc several times and was put on antibiotics, like rocephin, cipro, macrobid, and a couple others that I cant remember. This was over the course of beginning of jan to end of feb...they were giving me medicine even though my urine showed clean and they couldnt grow anything on my culture, well I went to a urologist and he told me I had urethritis and gave me a week antibiotics (he had done a cystoscope) he said that the uretha looked irritated...well something just really didnt click well between me and him, so I went ahead and took the meds but decided that if it didn't work then I would just look for anothe uro. Well the meds didnt work, so I went to a different uro and he done the interstitial cystitis test on me and I tested neg, it is where they administer potassium into your bladder and if you have ic it supposedly agonizing pain. But it is very possible that even if you dont have it your test can still come back neg. well anyways he put me on 3 months of antibiotics (macrodantin) and he told me that he thinks I have chronic cystitis, and that I needed a long term antibiotic to treat it, I have been on it a month and I already feel a ton better , but as of today I feel it again, which I do feel it every once in a while. Everytime I feel it though I start feeling like oh no, what if this is a set back?! The pain was unbearable at one time, before I got on these antibiotics and I was taking Lortab for the pain. I guess my question is, why would bacteria show up in my urine if it is so bad I need 3 months antibiotics?? I am also scared that once I am off of them it will come right back? Has anyone else had anything similar to this?? TIA

    ***Also this week I have been on my period, and I have felt worse? Any Idea?

    Thanks! Angel

  • #2
    I would say my situation is simialr not the same, but similar. I had a uti about 5 or 6 years ago. The uro I went to then kept me on antibodics for about a year and I had clean urine sample with no infections. I continued to feel worse at times in tears and my husband was about ready to take me to the er, but never went. Shortly after that my regular dr sent me to another uro and he said I had scar tissue in my uretha and bladder and suggestions surgery to remove it. He would dialate my uretha evertime I went to him. We did the surgery and he said my bladder was inflammed and I had a lot of scar tissue. He also said he strected my bladder. He said after the surgery that I had and over active bladder. So he put me on meds for that. Well nothing seemed to work and he wanted to do surgery again and I refused and quit going to him. My regular dr tried me on other OAB meds and still nothing so finally I asked if there was another uro I could go to and so last week I went to another and we talked and he said he thought my the sounds of my symptoms I had IC. He did any ultrasound and checked me the order a ct scan which I did yesterday. He told me to follow the IC diet and I am trying and it is very hard, but I do see where it helps. He also put me on Elmiron. I go back next week.

    I would suggest to find another uro. And it wouldn't hurt to try doing the diet to see if it helps. Good luck I know it has been a journey for me and many others.
    Melissa Barham

    currently taking Elmiron 100mg 3x daily
    currently taking Klonipin 1mg as needed for nerves and stress
    currently taking Ditropan XL 10mg (Oxbutynin ER) once a day for ugency and frequency.

    trying Aloe Vera Juice just a little mixed with water

    I am on my 3rd uro. The 1st I went to cause of an UTI it was clear in the culture by the next month, but I was still having issues so he continued me on macordantin (sp.) and urised for about a year and I just seemed to get worse. My 2nd uro said he thought I had an OAB and tried me on meds for that. Everytime I went to him he would dialate my uretha and he also did a hydro (streched my bladder) and supposely removed scar tissue from my bladder and urethea and said my bladder was inflammed. But he said I didn't have enought pain to have IC. I tried many OAB meds and nothing seems to help I was in the bathroom atleast once an hour if not more. I suffered for a while. Now I am on my 3rd uro. The 1st visit we talked and he instantly said I had IC. He checked me and did an ultrasound of my bladder and order a cat scan and put me on Elmiron. I am currently waiting for the results of the cat scan.

    A little about me that doesn't have to do with this is I am a stay at home mother of two kids and I have a very loving and supportive husband.


    • #3
      I just got this uro, I have only seen him one time so I think I will stick with him for now, it is just for one thing I cant even find anything on the net about chronic cystitis...very frustrating!


      • #4
        Angel, I think you're wise to stick with one doctor for at least a few visits. It's not unusual for it to take a while for a diagnosis. I wasn't diagnosed during the first visits because my uro was ruling out other possible causes for my pain. He is the one who diagnosed me and treated my IC until he retired thirty years later.

        Also, any time you change doctors, you are back at square one in the testing.

        Sending encouraging hugs,

        P.S. I do think it's a good idea to give the diet a try while waiting for a diagnosis. The link to the latest food list is in my signature below.
        Stay safe

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

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        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.

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        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