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  • Scared and confused

    Hello everyone,

    I have an appointment with a urologist tomorrow for a CT and in-office cystoscopy. I saw him a few days ago for the first time after experiencing frequency and urgency for what's now been two weeks (on and off at first, and constantly lately). I asked him about IC and he's a bit surprised about my sudden onset.

    I also developed what I am almost positive is IBS about two months ago (have a GI specialist appointment in August to confirm). I've been following the IBS diet etc and have improved. The urinary symptoms are bothering me a lot more - sometimes I go to the bathroom every 10 minutes and am still feeling urgency again right away.

    I am wondering if any of the supplements I took for IBS brought this about (I discovered citric acid as an inactive ingredient in one of them and replaced it with a different med a few days ago). It's very tough to follow both the IBS and IC dietary guidelines, but I can learn to deal with that part.

    I am in my mid-20s and about to move to a different city, so this came at a particularly bad time (not that there's ever a good time...). The urologist put me on Enablex when I saw him, but I can't say it's done much yet (but I understand it can take two weeks or so). I also started taking Azo yesterday to see what happens and because I heard it can help with pain from the cystoscopy.

    I am scared of having IC on top of the IBS (and pre-existing serious but now stable migraine problems). It's been a very stressful few weeks. Also, the urologist seems nice, but how do I know if he knows what he's doing? Do you think it's strange he wants to do an in-office cysto (especially with Dr. Lowell Parsons and others saying one could usually diagnose based on the PUF questionnaire alone)? I understand the CT making some sense due to a family history of kidney stones. I would appreciate any thoughts.
    Spring/summer 2009 - diagnosed with H Pylori and vitamin D deficiency (both treated successfully), hormonal imbalance, and food allergies
    July 2007 - PFD confirmed by physical therapist
    June 2007 - start of IC symptoms.
    May 2007 - start of significant IBS symptoms
    Summer 2005 - migraines became chronic

    Conditions: IC, IBS, PFD, migraines (currently under control), back problems

    Current meds: bio-identical hormone creams, vitamin D, zinc, Captomer, magnesium oil, D-Mannose, FemDophilus, magnesium ascorbate

    Other treatments: massage, mind-body healing

  • #2
    Ps

    I should note that a UTI has been ruled out after an initial misdiagnosis/"treatment" for one. There has consistently been blood in my urine in the tests done the last two weeks (not visible to the naked eye).
    Spring/summer 2009 - diagnosed with H Pylori and vitamin D deficiency (both treated successfully), hormonal imbalance, and food allergies
    July 2007 - PFD confirmed by physical therapist
    June 2007 - start of IC symptoms.
    May 2007 - start of significant IBS symptoms
    Summer 2005 - migraines became chronic

    Conditions: IC, IBS, PFD, migraines (currently under control), back problems

    Current meds: bio-identical hormone creams, vitamin D, zinc, Captomer, magnesium oil, D-Mannose, FemDophilus, magnesium ascorbate

    Other treatments: massage, mind-body healing

    Comment


    • #3
      hi there,
      an in office cysto can help rule out cancers and such things; OCCASIONALLY severe ic can be seen as well. i haven't had one (i'm afraid!!) but may in the future.

      i understand your trepidation over diets...i just had to start a gluten free diet which is VERY DIFFICULT and can get EXPENSIVE. i HAVE to cheat on the ic diet a bit occasionally to be able to eat it seems (although i don't eat much lately...sigh).

      you mentioned moving...is it close to where you live now so you can continue seeing your docs? unless you're not too thrilled w/your docs! i haven't had good luck at ALL where i am and am willing to go anywhere now to find a GOOD caring doc (and a surgeon...).

      good luck and let us know how the cysto goes.

      tracy
      (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

      Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

      I'd like to be on House, MD as a medical mystery.

      Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

      Connor & Mommy by the tree:


      Connor with Santa...so happy!


      I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

      Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

      I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

      Comment


      • #4
        It's true; most doctors will do at least some testing, including the in-office cysto, to rule out polyps, stones, cancer, and the like. These health issues may mimic the symptomology of IC and so, theoretically, you could score as having IC on the PUF when in fact you had a totally different disease. That's why it is actually good to do the diagnostic testing in addition to the questionnaire.

        So no, I don't think it is strange your doc wants to do these tests -- most urologists will do at least some of them to be complete.

        It is very common for an ICer to have an in-office cysto as one of the first tests in her/his search for a diagnosis. I've never had one personally, but I am sure others who have had them will come along and share experiences. I do know, from years of experience with catheters, that it is important to relax and just breathe so your muscles are loose enough to let the scope pass.

        ****
        Jen

        *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.

        Comment


        • #5
          Hi Jamie! Sorry you are having to go through all this! Moving brings on lots of stress and probably helped bring on the IBS and IC...if that's what you have.
          I had an in office cysto 20 yrs ago but didn't know they still did them now. I thought it was only done in hospitals now.
          You might mention to your dr. before the test that you are taking the AZO.....not sure they can do a cysto if you are orange inside.....lol It does work great afterwards though! Good luck! Roxie

          Double Spinal Cord Stimulator surgery 8/09
          Unsuccessful MiniArc sling surgery 12/07
          Dx'd Hypothyroid
          Dx'd Chronic Axonal Neuropathy & Myopathy
          June 2007
          Dx'd IC May 2006 (after suffering for 25+ yrs!)
          First Cysto 1979
          First Hydro 1981 (Many treatments since then!)
          Collagin"Durasphere" injections for urethra
          Gall bladder surgery Aug. 2004
          Gastric Bypass Dec. 2004
          Dx'd: Barrett's Esphogus July 2004
          Dx'd: Vaginal Atrophy 2005
          Bladder surgery 2000
          Dx'd: IBS 2000
          Hysterectomy (fibroids) 1999
          Laminectomy 1989
          Dx'd: Degerative Disk Disorder 1989

          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

          Comment


          • #6
            Thanks

            Thanks for the info, guys. I will definitely tell the Dr. about the Azo. He didn't give me any special instructions for the cysto, so I doubt it will be a problem?

            I am moving far away from here and thankfully to a very large city where I expect to find better medical care. I am going to the GI clinic of a major research hospital in August (this is why I decided to wait until then to get IBS treatment, but like I said, the urinary issues can't wait until then).

            Part of what I find scary is that the urologist and another doctor have told me that the cysto shouldn't be painful, but then of course lots of women with IC have had horrible experiences. Hard to predict what will happen.

            I am also starting to wonder if it could be pelvic floor issues alone rather than IC. Because of the IBS, I've had a lot of issues like constipation etc and it sounds like that can contribute to pelvic floor problems. Does anyone know if it would be possible to have blood in one's urine based on pelvic floor issues alone?

            You know, while the move/change of jobs definitely comes with stress, this all actually came at a pretty good time in my life. I honestly didn't feel _that_ stressed, if that makes sense, and I am excited about the new city and job! I feel like the possible IC plus IBS are taking away so much of that now (e.g. I love food and trying new restaurants and that's now problematic, or right now I would rather not be sitting through a show or movie). I am trying to look at the bright side, and especially at the fact that I have a lot of support from my significant other, parents, and friends. I just have to keep believing that life won't always be as difficult as right now.

            -- Jamie
            Spring/summer 2009 - diagnosed with H Pylori and vitamin D deficiency (both treated successfully), hormonal imbalance, and food allergies
            July 2007 - PFD confirmed by physical therapist
            June 2007 - start of IC symptoms.
            May 2007 - start of significant IBS symptoms
            Summer 2005 - migraines became chronic

            Conditions: IC, IBS, PFD, migraines (currently under control), back problems

            Current meds: bio-identical hormone creams, vitamin D, zinc, Captomer, magnesium oil, D-Mannose, FemDophilus, magnesium ascorbate

            Other treatments: massage, mind-body healing

            Comment


            • #7
              No cysto after all

              So the doctor didn't do a cysto after all. They did the CT and found nothing wrong with my kidneys etc. The reason he said the cysto wasn't really necessary is because of my age, no history of smoking, etc. So now he wants me to stay on 7.5mg of Enablex for the next two weeks and see what happens. When I asked about antihistamines, he ended up prescribing Vistaril (I hope it doesn't knock me out completely, will just take it in the evenings for now - I am also on 50mg nortryptiline for my migraines, so don't want to overdo it). He said that if the Enablex works somewhat but not great, then he wants to up the dosage to 15mg. He also gave me an IC brochure and said that he could put me on Elmiron if the Enablex-type drugs don't work.

              The Dr. also said that I could safely stay on Azo for a few weeks (I think it may have been helping). Are there any other Azo-type drugs that one can take more long-term? Again, I don't have so much pain as just frequency/urgency and the discomfort directly tied to that.

              I've ordered Cystoprotek and aloe vera from the ICN Shop today, as well as a relaxation CD and yoga DVD. I will talk to my physical therapist about pelvic floor therapy when I see her next week. I asked the Dr. re blood in urine and PFD and he said that it was still possible for it to be a PFD issue and that the blood doesn't always mean much.

              -- Jamie
              Spring/summer 2009 - diagnosed with H Pylori and vitamin D deficiency (both treated successfully), hormonal imbalance, and food allergies
              July 2007 - PFD confirmed by physical therapist
              June 2007 - start of IC symptoms.
              May 2007 - start of significant IBS symptoms
              Summer 2005 - migraines became chronic

              Conditions: IC, IBS, PFD, migraines (currently under control), back problems

              Current meds: bio-identical hormone creams, vitamin D, zinc, Captomer, magnesium oil, D-Mannose, FemDophilus, magnesium ascorbate

              Other treatments: massage, mind-body healing

              Comment


              • #8
                You know, your story sounds so familiar to mine. Mine started suddenly as well, which also surprised my urogyno. He diagnosed me with IC due to a positive reaction to the potassium sensitivity test, even with a normal cystoscop. Elmiron doesn't seem to help. The only thing that helps me sleep is Atarax (an antihistimine). They are going to explore for endometriosis in August because nothing is helping my symptoms (I suddenly started having trouble in November while running). No sign of bladder prolapse either. So, they are a little perplexed with me, but feel pretty strongly that I have IC. Nothign helps mind you. OAB meds didn't do anything. I tried Detrol, Ditropan, Vesicare and some other one. Then they evaluated me and said, "no chance you have an overactive bladder". SO, months of those meds for nothing .

                My worst symptom is urgency/frequency. I try not to strain, which I feel could help, but it doesn't. The Atarax helps at night, Ultram for some reason helps the urgency/frequency problem during the day (not much mind you).

                Oh, another thing, I too moved to a new city, where I didn't know a soul, 1 month after my diagnosis! It was hard, but not impossible. Good luck with your move! I had movers and had to take a lot of pit stops along the way, so I left a few hours before them.

                I hope this helped... in some way. I have to avoid all forms of diuretics (even veggies that do that like asparagus) because for me, increasing the volume of my urine is profoundly worse than letting it get concentrated (contrary to IC recommendations... another thing that perplexes my doctor).

                Originally posted by jamie_visiting View Post
                Hello everyone,

                I have an appointment with a urologist tomorrow for a CT and in-office cystoscopy. I saw him a few days ago for the first time after experiencing frequency and urgency for what's now been two weeks (on and off at first, and constantly lately). I asked him about IC and he's a bit surprised about my sudden onset.

                I also developed what I am almost positive is IBS about two months ago (have a GI specialist appointment in August to confirm). I've been following the IBS diet etc and have improved. The urinary symptoms are bothering me a lot more - sometimes I go to the bathroom every 10 minutes and am still feeling urgency again right away.

                I am wondering if any of the supplements I took for IBS brought this about (I discovered citric acid as an inactive ingredient in one of them and replaced it with a different med a few days ago). It's very tough to follow both the IBS and IC dietary guidelines, but I can learn to deal with that part.

                I am in my mid-20s and about to move to a different city, so this came at a particularly bad time (not that there's ever a good time...). The urologist put me on Enablex when I saw him, but I can't say it's done much yet (but I understand it can take two weeks or so). I also started taking Azo yesterday to see what happens and because I heard it can help with pain from the cystoscopy.

                I am scared of having IC on top of the IBS (and pre-existing serious but now stable migraine problems). It's been a very stressful few weeks. Also, the urologist seems nice, but how do I know if he knows what he's doing? Do you think it's strange he wants to do an in-office cysto (especially with Dr. Lowell Parsons and others saying one could usually diagnose based on the PUF questionnaire alone)? I understand the CT making some sense due to a family history of kidney stones. I would appreciate any thoughts.
                [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                [

                Comment


                • #9
                  Yeah, the urologist told me that if it's IC, the Enablex might not end up helping. I think he wants to see if it's doing anything before giving me Elmiron, which is a more problematic drug obviously. Maybe the Elmiron will still kick in for you given that you haven't been on it that long? I definitely hope so!

                  I am having a not-as-awful day today (incl. a 3.5 hour period without going to the bathroom!), mainly thanks to Azo, I suspect. I am starting on the Vistaril tonight, which should be pretty similar to the Atarax. I realize I can't spend my life on Azo, but I did need a short-term solution.

                  I think I might be like you regarding the volume/concentration thing. I don't have any burning or what not, just discomfort/urgency as my bladder fills. Have you tried Cystoprotek or aloe vera? I'll report on my experiences once I get them (in a week-ish).
                  Spring/summer 2009 - diagnosed with H Pylori and vitamin D deficiency (both treated successfully), hormonal imbalance, and food allergies
                  July 2007 - PFD confirmed by physical therapist
                  June 2007 - start of IC symptoms.
                  May 2007 - start of significant IBS symptoms
                  Summer 2005 - migraines became chronic

                  Conditions: IC, IBS, PFD, migraines (currently under control), back problems

                  Current meds: bio-identical hormone creams, vitamin D, zinc, Captomer, magnesium oil, D-Mannose, FemDophilus, magnesium ascorbate

                  Other treatments: massage, mind-body healing

                  Comment


                  • #10
                    Originally posted by jamie_visiting View Post
                    Yeah, the urologist told me that if it's IC, the Enablex might not end up helping. I think he wants to see if it's doing anything before giving me Elmiron, which is a more problematic drug obviously. Maybe the Elmiron will still kick in for you given that you haven't been on it that long? I definitely hope so!

                    I am having a not-as-awful day today (incl. a 3.5 hour period without going to the bathroom!), mainly thanks to Azo, I suspect. I am starting on the Vistaril tonight, which should be pretty similar to the Atarax. I realize I can't spend my life on Azo, but I did need a short-term solution.

                    I think I might be like you regarding the volume/concentration thing. I don't have any burning or what not, just discomfort/urgency as my bladder fills. Have you tried Cystoprotek or aloe vera? I'll report on my experiences once I get them (in a week-ish).
                    The problem I had with OAB meds is that they gave me retention. They tried me on 4 meds and they were terrible. The side effects were bad for me too. I can deal with dry mouth/eyes/nose/etc. But my eyes got so dry that I developed bumps/sores on the bottom of my eye lid that scratched my eye. It was terrible. I had to have steroid drops to control that. My urologist put me on the OAB meds, and when he said to see an IC specialist, they did a little test and said that my bladder is not overacting. I am just hypersensitive or something. I don't have very good bladder capacity right now. The bladder can hold about 1000cc of water. At 40cc, I really had to pee. At 150cc I had to pee so bad that I would pull off the road of a busy highway to pee behind a tree (doctor's description of urgency), and at 350cc's I was hyperventilating because I was crying from the horrible urge to pee. So, anyways... that was terrible!

                    I am hoping Elmiron kicks in. I will keep on taking it because I have no side effects from it and tolerate it ok. Azo (and Urelle, and Urispaz, and Pyridium) all did nothing for me. I think they made me worse because my urine volume increased with those drugs. Oh well... I can say I tried righ!
                    I am reluctant to try aloe vera (this GI expert I know says that aloe vera is linked to a type of colitis and told me to avoid it... so that scared me). I ordered a month supply of Cysta-Q (sample from Farr lab.). Maybe that will help... maybe not. It helped Berkshire Road a lot (with her Elmiron), so I thought, why not. My doctor said go a head and try... and since they will explore surgicaly in August for endometriosis if I don't feel better, I thought, why not try something else first! Nerve meds didn't help me (and Topamax actually increased my urine volume... lucky me...).

                    Well, I hope those meds you got help. The anti-histamine should help you sleep better. I know it did for me!

                    Keep in touch and let me know how things go?
                    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                    [

                    Comment


                    • #11
                      Vistaril

                      I slept alright on the Vistaril, I guess. I woke up once at 5am to go to the bathroom and it took me a little while to fall back asleep (maybe the Vistaril had worn off by that time?). I will keep taking it, but only at night (Dr. said I could take it every 6 hours, but I feel like it would make it tough to do work etc).

                      While yesterday was a "better" day, any pressure whatsoever on my bladder would give me the feeling that I needed to pee (even wearing a seatbelt is tough). But if the pressure was removed, I didn't necessarily need to go badly. I am sure a lot of you guys have had similar experiences.
                      Spring/summer 2009 - diagnosed with H Pylori and vitamin D deficiency (both treated successfully), hormonal imbalance, and food allergies
                      July 2007 - PFD confirmed by physical therapist
                      June 2007 - start of IC symptoms.
                      May 2007 - start of significant IBS symptoms
                      Summer 2005 - migraines became chronic

                      Conditions: IC, IBS, PFD, migraines (currently under control), back problems

                      Current meds: bio-identical hormone creams, vitamin D, zinc, Captomer, magnesium oil, D-Mannose, FemDophilus, magnesium ascorbate

                      Other treatments: massage, mind-body healing

                      Comment


                      • #12
                        I know that the Atarax helps me sleep at night and if I take it during the day I am a little sleep, but not zonked. I have to do a high level of thinking and I don't want that drug to mess up my masters class!

                        Ug... anything putting pressure on my belly makes me feel like my bladder is going to burst! I hate that! I wear baggy clothes because anything tight makes me feel 1000x worse!
                        [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                        [

                        Comment

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