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why has my docs not mentioned IC?

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  • why has my docs not mentioned IC?

    onset- E-coli? gift from Monterey Mexico
    1978-1979
    infections started UTI
    1983-4
    treated during preg UTI
    1984-5
    hospitalized infection unknown origin food poisoning salmonilla ?
    UTI
    cortizone injection sacro back pain acute
    1986-7
    treated during preg
    UTI
    1988
    hospitalized infection unknown origin bactirial storm possible toxic shock
    UTI
    1988-9
    hospitalized infection unknown origin
    UTI
    1990
    treated during preg
    UTI
    1992-1994
    treated during preg
    UTI
    eeg headaches
    tubal ligation
    ectopic pregnancy rupture
    1994-1996
    treated during preg
    UTI
    treated during preg
    UTI
    partial hysterectomy all other forms of birth control failed totally. bladder tack-up
    2002
    UTI
    Bowen's Disease
    Laser surg. and bladder tack-up
    UTI
    wrists,upper back weakness and pain numbness
    neurological tests
    I can't remember all the lap for ovarian cycstes about 5.
    2007
    8 UTI's in the past year
    cysto with retrograde thankfully knocked out.
    Pain in my lower back, lower abdominal pain constant urgency.
    My uro has ruled out cancer.That was my big fear.
    The pain and fatigue have made my life unbearable.I had to stop work last year.I don't leave the house unless unavoidable.
    I can hardly handle the have to's, and never the want to's.Narcotics make me vomit.The docs find blood and bacteria every time. I don't think my bladder empties completley. They have me taking phenazopyrid and trimethoprim. He wants me to take a propylactic antibiotic to prevent infection. It has been so long since I was without pain.I don't remember, but I want to.
    Any advice, input, thankyou

  • #2
    If you are having diagnosed infections, it is not likely to be interstitial cystitis, which is probably why your doctor hasn't suggested it. If you have the symptoms of a UTI, but the cultures are saying no infection, it could very well be a different problem entirely.

    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.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Well, I used to get a lot of cultures that showed bacteria colonies, but not enough to qualify as an infection. That can happen with IC.
      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
      Wishing you happiness and good health, and all the best out of life.

      Peace, Carolyn
      ___________________________________________________

      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


      On the Beach with IC

      Comment


      • #4
        I'm the same as Carolyn, my uro would send a sample out to be cultured and he would say that they did find bacteria but not enough to qualify as an infection. Since all this mess started w/ me they have never shown that I have an infection. My GP would take a culture and it would have blood because usually I was also having my period but no sign of infection, they would just give me the antibiotics anyway because I had the symptoms of a UTI. Looking back now I know these were flares because if I waited they would go away w/o the antibiotics and they came around the same time as my period alot which is common for ICers.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #5
          I started out having tons of UTI diagnosed by cultures. They started at age 16. After a while, when I got "UTI's" they came back sterile. By the time I was 19, I rarely ever had bacteria. I was averaging about 8-10 UTI's a year at the beginning. Now I get about 3-4 and lots of flares. Yuck. IC causes the UTI symptoms, but with lack of bacteria. Since you keep having the infection, IC doesn't make sense. You could, However get a hydro done just to rule it out. Thats what I would do. I hope you feel better soon!

          Erika
          IC diagnosed officially via cysto/urodynamics 1/26/07

          Grade II Endometriosis diagnosed via lap 12/11/07

          "Fall down seven times, Stand up eight."

          "Life is a tragedy for those who feel and a comedy for those who think."

          Current Treatments:
          Interstim Since 5/25/07!
          Birth Control

          Comment


          • #6
            Have your UTIs been diagnosed through a culture or urinalysis each time? And were they always shown to actually be UTIs?

            Some of us with IC are more prone to UTIs - I was - but we also have lots of times when it feels like a UTI, but it ends up that we do NOT actually have a UTI.
            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

            Comment


            • #7
              I used to get UTIs all the time too. Usually with mine, I would feel it and be certain that is what I had. But, when I'd drop off a urine sample, the dipstick test would say they was no infection. However, EVERY time I insisted on a culture, it WOULD show an infection. Now, I have them cultured every time, as a matter of course.

              Like you, I struggled with "repeat" infections for years. Last year, I had 10, (yes TEN!!!) UTIs! I will never know whether or not it actually was 10 separate infections, as oppossed to one long unresolved infection. But, finally my Dr. put me on a daily, low dose of Macrobid to ward them off. It has helped considerably. I have only had 1 or 2 in the past year, which is great for someone with my track record...especially since I know self cath several times a week, sometimes daily to do rescue instills!

              I agree with the others that it certainly might help you to get a cysto/hydro, just to get a look inside and make sure that you dont have IC or something else going on. However, as others pointed out, IC is usually d/xed when someone feels like they have a UTI all the time, but no bacteria is found.

              I think your Dr. has the right idea with trying you on a daily, low-dose antibiotic. I think you will feel alot better, and probobly wont have near as many infections! I sure do hope so!

              I am sorry that you have felt so bad for so long. I hope that you start feeling better very soon.

              Hugs,
              Amy

              Comment


              • #8
                I started out with "post coital" antibiotics. Yes my mom knew what post coital meant~! Then since that didn't work, we tried 1 macrodantin everyday for 6 months in case I had an nfection in the bladder wall that wouldn't budge. That didn't work, and then we persued IC. Sad how that happens...

                Erika
                IC diagnosed officially via cysto/urodynamics 1/26/07

                Grade II Endometriosis diagnosed via lap 12/11/07

                "Fall down seven times, Stand up eight."

                "Life is a tragedy for those who feel and a comedy for those who think."

                Current Treatments:
                Interstim Since 5/25/07!
                Birth Control

                Comment


                • #9
                  Chronic UTI's. Thats what they tell me.I am so tired of being told I don't know how to wipe my own hiney. After 6 kids I am a professional hiney wiper!What i don't understand is why the symptoms never completly go away. If it is bacterial the cipro should have knocked it to kingdom come. not. it was rageing again within weeks. My gp and uro thought it was pylonephritis. The urologist told my husband after the cysto retrograde (he didn't even speak to me) that my kidneys were perfect. the doctors I have seen all act like I am unclean and don't take the antibiotics. I do take them, they don't work. Sorry to be such a crybaby.

                  Comment


                  • #10
                    It sounds very much like you are not happy with your current doctor --- so I will suggest you see a different urologist for a second opinion.

                    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.

                    Patient Help: http://www.ic-network.com/patientlinks.html

                    Sub-types https://www.ic-network.com/five-pote...markably-well/

                    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                    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]

                    Anyone who says something is foolproof hasn't met a determined fool

                    Comment


                    • #11
                      There have been several times that the dipstick said no or the culture said no. They did nothing at all on those occasions. It almost seemed I had to have bacteria to validate the pain.
                      Another doctor would be lovley. Unfortunatley my insurance is locked in with one set of urologists.

                      Comment


                      • #12
                        Get a new doctor! It sure does sound like it could be IC with the sterile pee. Another doctor would be more than happy to investigate your problems. That many uti's is not healthy or normal. They always tell me to wipe front to back too. IC can make us more suseptable to uti's.

                        Erika
                        IC diagnosed officially via cysto/urodynamics 1/26/07

                        Grade II Endometriosis diagnosed via lap 12/11/07

                        "Fall down seven times, Stand up eight."

                        "Life is a tragedy for those who feel and a comedy for those who think."

                        Current Treatments:
                        Interstim Since 5/25/07!
                        Birth Control

                        Comment


                        • #13
                          IC as a bacterial infection

                          There are many of us who believe IC is often really an undiagnosed bacterial infection. Many of us have been told that we did not have bacteria based on the agar plate culture that is universally used for urine testing. When we learned about the broth culture and sent a specimen we were found to have Enterococcus, a form of Strep. This is just as common as E. coli in the intestines (the source of UTI bacteria) but it is harder to culture. A microbiologist in a large urology practice told me when they find it they dismiss it as a "contaminant". It should be taken seriously if it is found. The agar plate is not good at finding it and the broth provides a nutrient environment to encourage growth and it is given a week or so to grow. No labs do this kind of culture except for United Medical Lab in McLean, VA.

                          Treatment requires antibiotics that are effective for this particular species, and in the right dosage, for several months. It is believed that it either invades the tissue so is embedded, or it forms biofilms as E. coli have been found to do. (See the work of Scott Hultgren's lab on E. coli and "pods" they have found in mouse bladders). If bacteria are in biofilms it is hard for antibiotics to reach them and they hide from being cultured. They can then re-emerge to cause another infection. Bioflims are being found much more often now, as in the case of bacterial vaginosis, and they are hard to treat.

                          No one has ruled out bacteria as a cause of chronic bladder symptoms. They do not know whether they have cultured every possible pathogen in urine specimens. There are better high tech DNA-based tests being developed but they aren't available in clinics yet.

                          http://jcm.asm.org/cgi/content/abstract/44/2/561

                          Still, as of now, the broth can find more than the agar plate, but we believe molecular testing will be the wave of the future. We definitely need it!

                          Martha F

                          Comment


                          • #14
                            Martha, that actually makes sence to me. A few questions what is the broth?second, what is a biofilm? I have thought it might be that the infection never goes far away. I would test neg if the situation isn't right for them to grow. But its there just waiting for the right moment to rear its ugly head. How could I be getting new bacteria that is immune to the antibiotics that I have taken for years.I am going to see my urologist again and ask him these questions. if it is a new infection bactrim should work. I like the idea of a cure better than just staving off the symptoms.You all have been very thoughtful and informative. I will let you know how it goes with the urologist.

                            Comment


                            • #15
                              Wish I could answer all the questions but will try to answer what I can. The broth is a solution of nutrients that encourages the growth of bacteria that are reluctant to grow out. Some species are that way and they take the right environment to grow, and even then they do not necessarily grow in large numbers. They may also be slow to grow so 24-48 hours may not be enough but that is what the labs allow for most urine cultures. If they would allow them to grow for a week they might show more.

                              Biofilms are when the bacteria invade the bladder wall and form a protective coating of some type around the colonies so that they can hide from detection and from antibiotics. It is an example of Darwin's "survival of the fittest". Dr. Hultgren of Washington Univ in St. Louis discovered them in the bladders of mice and photographed the process in the case of E. coli. But it is probable that other species do this, too. The Japanese have found that Enterococci do the same thing, and they also found these biofilms may contain other species inside.

                              No one in the US had published any articles saying they have found biofilms in human bladders but they know that there are biofilms in the case of bacterial vaginosis. I have learned that we have to do a lot of research on our own to figure out how bacteria can invade and cause infection. And there is much more research to be done in this field. We know from some research that many women can have the same bacteria and tolerate it without symptoms. There must be triggers than activate an infection and we can only speculate on what these are. It could be a weakened immune system, it could be due to hormonal changes, trauma (such as an operation), or it could be a genetic predisposition or certain strains of bacteria that are move invasive. Another patient and I have speculated that it could be due to methods of birth control since these can change the makeup of the flora in the vagina and that is where the bacteria migrate from (after coming from the intestines). The female anatomy makes this more feasible. If we think about it not many males have UTIs and not many have IC. That is one reason it was easy for me to accept the bacterial theory.

                              Biofilms can explain recurrent infections. The bacteria hide and then re-emerge at a later date. That is what Hultgren's lab is suspecting.

                              These are my thoughts. I am not a scientist but have tried to explain to myself what could be happening. I did respond to antibiotics but it was important that the culture report showed what bacteria were there and what antibiotics were best to treat with. And it takes months which makes sense if they are embedded or in a biofilm. I just read that Hultgren's lab is trying to develop meds that would "defang" the bacteria so that they don't "assemble pili" or the tiny hairs that enable the bacteria to invade host cells and defend themselves against the immune system. E. coli are shown to have pili but I don't know that all species do so that approach might not work in all cases. Currently E. coli are believed to cause most UTIs, but I think eventually, with better testing, they will find other species can be culprits, too, but they aren't being detected.

                              Martha

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