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Cause of IC? Well, My guess stems from my own experience of course!

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  • Cause of IC? Well, My guess stems from my own experience of course!

    I am going to have to start by saying that if I had any real knowlege of the cause of IC, I wouldn't be working and running to the bathroom every few minutes, but I would be headlined on the IC-Network page as a hero! So, just to set the record straight right from the get-go - these are only my guesses.

    I was diagnosed the first time right after I had been through a surgery where the recovery room people removed my catheter before I woke from surgery. I didn't pee for almost 20 hours, even though I had received to complete bottles of IV solution. After threatening to phone my doctor at home at 5 in the morning, the nurse in charge came in and was going to just cath me long enough to 'drain' me. When she saw how much pee was in me, she was irrate! When she found out how long it had been and that I had requested a catheter the previous shift, she was even more upset and in fact, catheterized me for the remainder of that day. Soon after, I had trouble 'holding' it. I leaked, and I had terrible pain in the mornings. Unfortunately, this was about 15 years ago and the urologist I saw back then only told me that I had IC, and gave me a list of foods to avoid. No return visit, no understanding of what I had.. just don't eat these foods... Period!

    Now, years later,. but several years ago, I started having very similar problems including terrible pain when I urinated. I didn't want to return to the 'helpful' urologist of 15 years ago, so I found a new one and he is a wonderful doctor! He did the hydrocysto and not only diagnosed a very severe case of IC with ulcers, but also did the biosy to rule out cancer. I am very blessed that he has treated me with elmiron, and DMSO treatments, as well as a few other meds for comfort. [img]biggrin.gif[/img]

    So, my guess is that a mistreatment of the bladder can proceed the onset of IC.

    I also have asked and wondered if those women you 'wipe' back to front, could be causing bacteria and eventually this problem... but since it isn't supposed to be a bacteria problem, I guess that would get ruled out quickly. [img]confused.gif[/img]

    Just a little food for thought, but I would be curious how many others have experienced a surgery room "ooops" [img]mad.gif[/img] before the onset of their IC.
    Last edited by ShePurzz; 07-27-2006, 03:56 AM.

  • #2
    I never thought about it, but I now remember when I had my first child in 1998, they took my catheter out too soon and I couldn't "go." When the nurses later catheterized me, they couldn't believe how much was in there! I began symptoms after my second was born sixteen months later. I don't know if there is a relation either, but it is interesting . . .
    Alyson
    -------------------------------
    If you have time to worry, you have time to pray!

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    • #3
      I could go om forever about surgery and ER oopps.
      Yoy are not alone
      "Never take, I don't know how to help you as an answer."

      [email protected]

      Kara

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      • #4
        Some years ago I took part in a mail-in survey. I never was given total results of the survey, but was told that there were many people with IC who developed it within a year or two following a major abdominal surgery. I was one who did have onset of IC within months following an abdominal (I call it abominable) hysterectomy.

        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        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.

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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.
        [3MG]

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        • #5
          I definitely think catheters have something to do with it. In my experience they have the worst part of any hospitalization. I just learned to ask for a pediatric cath and was never offered one before of course. Do you remember our moms, etc. who had "female surgeries or female problems" ? Bet there was plenty of IC and no help for them. I think "femal e type" surgeries definetly stir up IC, Sandy

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          • #6
            I started having IC symptoms within a month after my second c-section. I had NO symptoms before that...
            Kim

            Diagnosed August 2001

            Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


            Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

            I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

            *****************************

            “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

            “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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            • #7
              I also had IC after abdominal surgery for my gallbladder. I wonder if it is the surgery, catheter or the antibiotics that they give you in such large amounts. Elena [email protected]

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              • #8
                My kids were born naturally(with an epidural) so mine wasn't caused by surgery. I did have a catheter and antibiotics though . . .
                Alyson
                -------------------------------
                If you have time to worry, you have time to pray!

                Comment


                • #9
                  WOW! Was I surprised to see the many responses and the many people with similar circumstances! After reading all the reply posts, I will add that I had 1 C-Section before the tubal pregnancy (that's the surgery where the catheter was prematurely removed and the IC problems started) but then nine months later had C-Section number 2, then only 15 months later C-Section number three. So, I had several surgeries where catheters were used without incident. The problem seemed to stem from the one where it was taken out and I was left for nearly 24 hours with an extrememly extended bladder. Thanks for your replies.. I really enjoyed reading them.

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                  • #10
                    This should probably be a 2 part question. Nobody knows the cause of IC, but I'll bet the true cause is defective genes that make us vulnerable. Pelvic trauma, of any kind, might be the trigger that starts the disease process. This could be surgery, UTIS, catheters etc. In other words, only people with genetic defects would get IC from pelvic trauma. The great majority of people who have surgery, catheters, or infections, never get IC. They heal, we don't! The cause probably isn't the trauma/damage that started the disease, but may be the genetic problem that lets the disease process continue,instead of healing like normal people.

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                    • #11
                      has anyone ever thought that it might be stress or trauma?
                      the reason i believe this is because when you are under alot of stress(could be infections,surgery,delivering babies,death in family,over-worked) your body produces more cortisol. i read that sometimes the extra production of cortisol can attack the weakest organ and sets up an autoimmune system were your own body attacks that organ. maybe all of us had the weakest organ in the bladder.
                      just my thoughts but it does make since to me.

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                      • #12
                        Hi, I think it may be acute stress that helps bring this disease to the surface,I had a heart attack and bypass surgery in "97"age 37yrs,my youngest child was only 7 yrs old,so needless to say the stress was over whelming.It was then I first remember at the 6 week check,mentioning about getting up in the nite to use the bathroom,my cardioligist seemed concerned at that time, I suppose thinking it was 1st stage heart failure,but of course it must have been the I.c rearing its ugly head.Diana
                        Don't frown, you never know who is falling in love
                        with your smile.

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                        • #13
                          I think mine was stress because it came about 2 weeks before the surgery to have my ovaries out. After surgery I felt fine until 5 weeks after and it came back strongly. Katiet

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                          • #14
                            I also believe that I got IC after having a hysterectomy. My surgery was in 1984. They left the catheter in because I could not pee after they removed it. The nurse seemed to be in a panic and hurried to put the catheter back in and after that I was sent home with it still in. I was in the hospital for nine days. Then when I returned to have the catheter removed, about a week later, I was sent home thinking life would be normal again. I could not pee and called the doctor for help. I was getting sever spasms and finally had to return to ER. Once again they put a catheter in and sent me home. About a week later the catheter was removed by my husband. This time I would go a few drops but the spasms kept building to the point of returning to ER again. They drained my bladder and I refused to leave with a catheter this time and went against the doctors orders. Setting the alarm, every thirty minutes to get myself up to drain a few drops until I could train my bladder to go normally again. A few months later I was forced to see my first uroglist, because I felt like I had an infection, but the test came back negative. Then I got to go through numberous dilations and silver nitrate treatments. Things seem to settle down some but my bladder never felt the same again. I really felt that it was just in my head. But then in Oct, 1995, after having normal sex with my husband, I was left in sever pain. I was waiting for the doctors office to open and to get help. I was then told I had an infection and was treated with antibiotics. But this went on and on and on. It did not go away. I was sent to see an urgolist and the rest you all have been through. In Nov. 1997 I was finally diagnosed with IC after having a Hydro. I have tried just about everything I have heard of and I now live with pain patches and other meds. I do get better after being treated with antibiotics. But not only do I believe the catheter has played a big part in my IC but maybe the fact that it was a latex catheter. Has anyone ever thought about this!

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                            • #15
                              I think I'm with Darlene on this one....I feel that we also probably have some defective gene that makes us vulnerable to IC. But I also feel that UTI's, pelvic trauma, abdominal surgeries, reaction to antibiotics, invasive procedures etc... trigger those bladder symptoms and cause IC to surface.

                              In my case, I was going thru my first IVF cycle when a UTI occured. Well, I took antibiotics and got over that UTI and shortly after, another UTI occured, then shortly after that one, another occured. Three UTI's back to back, except after the third, my symptoms never went away...they just escalated from there with no infection found in my urine. It was an absolute nightmare, going thru fertility treatments in high hopes of getting pregnant to gain nothing but a bladder disease. I had also had many IUI's and a laparoscopy done prior to the IVF cycle. So, my events took place as....invasive procedures (IUI), abdominal surgery (lap.) in which I'm sure a cath was involved also, more invasive procedures (IVF), then UTI's, then the dreaded IC surfaced. I won't even begin to mention the procedures that I went thru to get an IC diagnosis. YIKES!

                              All these responses bring up some pretty interesting questions,though! Just thought I'd add my two cents. [img]smile.gif[/img]

                              Mal <img src="graemlins/hi.gif" border="0" alt="[hi]" />

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