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Is it poss to have IC if no history of UTIs?

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  • Is it poss to have IC if no history of UTIs?

    I am wondering if it is possible to have IC without ever having had a UTI or bladder pain ever before in your life? I had a UTI back on 3/7, was treated with 3 days of Bactrum, it went away. For one week I was fine and now I have been urinating about 2 times every hr. Went to the URO on Fri and was given a new antibiotic (levaquin) and Detrol LA, helped a little, I now pee once an hr. He told me to give it 3 weeks. Anyway, I have no pain or burning whatsoever and I have never had a UTI or UTI symptoms in my life (I am 30 y/o). Could it still be IC? Or something else?
    Diagnosed: 07/11/07 after Cystoscopy - mild case of IC, I also have PCOS.


    Elavil 25 mg - 2 x a day
    Elmiron 100 mg/3 x a day
    Macrobid - after sexytime
    Pyridium - as needed - it helps!
    metformin - for PCOS

    Stopped taking: Detrol LA 5 mg and Vesicare 10mg

  • #2
    I think it could still be IC. My urologist doesnt think I've ever had a UTI, just IC flares. I have had frequency issues my whole life, but 4 years ago when I was in college I developed pelvic pain, some pelvic bloating and then one day woke up with MAJOR burning/ constant urgency/ frequency. I thought it was a UTI as I had never had one and I thought I was a wimp because I'd had friends with UTIs and they were never crying from the pain or anything. My roommate looked at me and said there was no way her UTIs were ever as bad as mine was and she rushed me to the hospital. They did the urinalysis and while I had the white blood cells, I did not have any nitrites or other sign of infection. They did a culture, and still no sign. That became the story of my life and my experience with IC. I always have frequency, now I always have a bit of burning too (but not excrutiating knife-like burning that my flares are characterized by). My flares are always hugely sudden and really bad, and they never ever show bacteria. So, as far as I know I have never had an infection and that was your question.


    • #3
      Well, it's possible it could be IC, but it could also be an infection that was resistant to the bactrim. I know it's scary. But, thankfully, you found a group of people here who understand what you are going through. Just in case, I would put yourself on the ic diet.

      When I was first diagnosed, it all started with a low colony count uti. I drank lots of cranberry juice, which was the worst thing I could do! It made things so much worse. The diet helps.


      • #4
        YES!!! I was dg with IC in Nov 06 with a hydro and I have only had 2 UTIs that I can remember..and I am 37...

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

        Link to Patient Handbook:

        Diet Reference Sheet:

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

        ICN 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.


        • #5
          I never had a UTI before the IC happened. Never had any bladder problems before the IC happened.


          • #6
            There's no definitive evidence tying IC to a history of UTI's. There are fairly definitive tests for IC, though, such as the PUF questionairre, potassium sensitivity test, and cystoscopy with hydrodistension. If you think you may have IC, it's best to get yourself to a urologist and have one or more of those tests performed. My early symptoms were frequency only; pain developed years later. IC seems to hit people differently, so it's probably not a good idea to try to self-diagnose based on comparisons with other people's experiences.

            Good luck to you, whatever it turns out to be.
            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


            • #7
              Before I was diagnosed with IC, I had only had one UTI. It was very severe, and was in my kidneys before I knew it, but it was the only one I'd ever had.

              Carolyn is right in that there are no scientifically sound studies indicating that IC is related to urinary tract infections, so it is entirely possible to seemingly develop IC out of thin air. She is also right that IC can present differently in different people -- in my case, I had experienced episodes of frequency and urgency since childhood (8 or 9 years old), and these became closer together and lasted longer as I got older. Finally, the pain began and I searched in earnest for a "real" diagnosis at that point.

              It's best to follow your doc's instructions at this point; Robin is right that it could simply be a UTI that happened to be resistant to Bactrim, and now that you're on a different antibiotic you may begin to feel better if this is the case. If not, you want to make sure your urine has been cultured each time, and if it has but no bacteria grew out, then it's time to ask for a referral to a urologist who can perform the testing required to determine if you have IC or not.


              *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.


              • #8
                Hello Colleneco and Welcome!
                I only had 2 UTI's before my IC diagnosis and both were during my first pregnancy (my Doctor said these were more common during pregnancy) I had to have several bouts of antibiotics even though my urine showed no signs of
                bacteria before my Doctor reffered me to a urologist. My urologist then had me on another bout of antibiotics to rule out infection. Part of diagnosing IC usually includes ruling out other possibilities, including infections. Many IC patients do have a history of ITU's (in some cases it may have been IC flares though) while other's don't. I hope you get some answers soon. You might want to check out the patient handbook here. It was a huge help for me when IC was brought up as a possibility.
                IC; PFD; possible Fibromyalgia; IBS;

                Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                I've Tried:
                three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                Currently using:
                Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


                • #9
                  Hey, I have IC and I've only had 2 or 3 UTI, but I'm not even sure they were UTI, I think they just didn't know what it was, and then figured out that it was really IC.


                  • #10
                    It is absolutely possible to develop IC without ever having a UTI.

                    Stay safe

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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


                    • #11
                      When I got IC, I had not had a UTI in 30 years.

                      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.

                      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                      Source - Pinterest

                      Current treatments:
                      -IC diet
                      -Elavil 50mg at night
                      -Continuous use birth control pills (4-5 periods/year)
                      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                      -Pyridium if needed,
                      -Pain medicine at bedtime daily, as needed during the day several times per week
                      -Antibiotic when doing an instillation to prevent UTI
                      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                      -Dye Free Benadryl 50 mg at bedtime
                      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                      -Managing stress= VERY important!
                      -Fur therapy: Hugging the cat!