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how about causes?

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  • how about causes?

    The more I read on this site, the more I think this is what's going on with me. I have been having the frequency/urgency for over a year, along with right kidney pain and lower back ache. It is such a drag to feel like you have to go all the time!

    I've been to 2 urologists, my family doc and a kidney specialist, living on Pyridium and slowly figuring out my triggers, and though I don't have a formal diagnosis, this sounds right. I've also had CT scans. If you are an IC patient and need an enhanced ab/pelvis CT, be aware that the contrast will likely cause a flare. It did for me, although I didn't know what it was at the time.

    But the one thing I haven't found is what causes this syndrome. I guess it doesn't really matter as the symptoms still have to be reckoned with, but there's a part of me that would still like an answer.

    Thanks everybody for sharing. I finally feel like maybe I'm not as crazy as I think.

  • #2
    Welcome to the ICN. It sounds like you are going through the Dr.s which is what happens to many of us in the quest to find out what is going on with us. To answer your question, they don't know what the exact cause is, in fact there could be several causes.

    One thing you mentioned was living on Pyridium. I think if I remember right this medication is intended only for short term useage. You may need to check with your Dr. on this and maybe get another medication to use to help with your symptoms.

    If IC is your problem, the handbook on this site is very informative. Another thing that benefits many is the IC diet and use of Prelief, that helps take acid out of the food and drink you consume that could irritate your bladder due to the acid.

    I hope that helps a little and again, welcome. hi


    "Life is what happens when you are making other plans" John Lennon

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    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

    "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."


    • #3
      Welcome to the IC Network. The Patient Handbook is at

      You might want to give the IC diet a try to see if it helps.

      Pyridium is usually given as a short-term medication, but there are others just as effective. I suggest you talk this over with your doctor.

      One thing you could do is to ask your doctor directly if what you have could be IC. Many doctors still feel it is extremely rare and are hesitant about diagnosing it.

      One day I feel the cause for IC will be found --- and when that happens, the cure will not be far behind.

      Sending a welcoming hug,
      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


      • #4
        welcome to the icn family. grouphug You will find lots of support here. I'm sorry you are going threw so much here but we are here to for you Donna gave you a great site to check out. You even may want to check out the ic diet sometimes if you watch your intake that will help you from flareing. good luck and please keep us posted on how you are. grouphug if you need to talk please feel free to email me my email address is at the bottom of this post.
        Medicine taken daily or as needed:
        1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
        2. MS.Cotin 100mg 3x daily
        3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
        4. Fentanyl 100 mg Change every 48hrs.
        5. Gentamicin 80mg install after each rescue treatment
        5 Leviquin 500mg self start as needed.
        6. Klonopin 1 or 2 daily as needed.
        7. Prosed/DS as 1 every 6hrs as needed.

        I have IC, but IC doesn't have me anymore!


        • #5
          Hi Andrea, no you are not crazy. We have all thought that at one time, of ourselves, I am sure. Welcome to the IC family, and a more supportive, helping, and compassionate family would be hard to find. You have been given some great advice by the gals posts. I know I went through quite a bunch of medical people before I was diagnosed, so know what that is all about. Hope that you can find the right combination of treatments for you, we all vary so much in how we have to handle our IC. Please keep us posted as to how you are doing, and once again, a big welcome hug Iris. hi grouphug
          Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


          • #6
            It's interesting that you both posted that pyridium is only meant for short term use. eek I have been using it off and on for about 9 months and everytime I call to refill they cheerfully do so. My urologist has yet to call back after conferring with the nephrologist, so I came here at the nephro's suggestion. Prelief is already helping quite a bit. Thanks everybody.


            • #7
              I have been taking pyridium plus 3 times a day for 7 years. I recently looked up long term use of pyridium on the internet. It can cause liver damage and methemoglonemia (the way oxygen combines with hemoglobin). I looked it up because I was in the hospital for asthma 3 times in the last year and every time I have to go home on oxygen. Asthmatics shouldn't need oxygen when they go home. Pyridium plus is actually intended for chronic use. I don't know if I could live without it. Good luck. It took me several doctors before I was diagnosed.


              • #8
                Hi... I actually had problems with my asthma after taking Pyridium for only a short period. After taking a few pills I would feel wheezy and short of breath. So I discussed it with my doctor, and as suggested by ICNDonna on this site, I asked if being switched to Urised was a good option. My doctor said that should be fine, and that's what I take when needed now. For me, it seems to work just as well... it makes your urine blue-green rather than bright orange, but the pain relieving properties are similar.

                Good luck!!! grouphug

                *Diagnosed with severe IC in 2004
                *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                **I am not a medical authority nor do I offer definitive medical advice. 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.


                • #9
                  Hi Andrea: hi

                  I am taking a natural approach to treating IC since medical methods failed me or made me worse. I have discovered that having a buildup of toxins in the system can cause not only IC but various health problems. Toxins can eat away at our organs, especially the bladder and stomach. eek I saw a naturopath yesterday who after looking into my eyes with a light told me I was full of inflammation. This makes sense considering that IC is an inflammatory condition. He gave me an herbal combination to try as a tea (horsetail, cornsilk and burdock) and another item to detoxify the liver (bitter bark). He also going to help me get off of my prescription drugs by replacing them with natural equivalents. For my thyroid, he gave me kelp with iodine and feverfew to prevent migraines.

                  I'll keep everyone posted on my progress. I pray that this approach helps my bladder and everything else (hypothyroidism, migraines, IBS, muscle aches) as well.

                  I wish you much luck and hope you find something that works best for you.

                  Zanni2 angel