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  • Scared, anxious and making myself sick with worry.

    I've just spotted this section, previously I've been launching myself on the main boards - and people were far too polite to tell me!

    Basically I had a sudden onset of frequency...really quite bad (this followed quite a stressful incident)...I saw a new gyne and he prescribed AB's. After a few days they seemed to work but he rang to say the urine sample had come back clear. But to keep on with the AB's.

    The symptoms got worse again, he prescribed 2 more types of AB's to be taken at the same time...again slight decrease in symptoms that started to come back.

    And finally he's given me another course - his theory is sometimes infections don't show up.

    All I've got is frequency, one day when it was very bad I had pressure as well but mostly it's just teh constant urge to pee (about 20 times a day).

    After going crazy with googling and checking out symptoms I came across IC and of course that sent me into a panic. Then the dr mentioned it at a visit.

    I don't have pain or urgency, I don't have night time waking. Just this horrid frequency...which at one point was stopping me thinking of anything else.

    I have subsequently realised I've always gone more often than normal. I didn't realise it was abnormal (I used to go about 10 times a day).

    My gyne has said next step is the cytoscopy under GA which I really feel is a bit premature...so I'm going to try and get other diagnostics out of the way. I"ve even read cystoscopy can cause injuries to the bladder which is of course the last thing I want.

    I've already started the IC diet...I can't tell if it's that or these current ABs that are slightly soothing my symptoms. Also I have booked an appointment with a highly regarded alternative practioner who specialises in bladder issues - I don't get to see her till next Friday but I'm hoping she might be able to give me some guidance!

    So I guess my question is....do things like this ever happen and just go? Has anyone posted saying 'I've got frequency' and it's turned out to be something completely different? I just can't seem to find alternatives that sound probable but I'm hoping you might know.

  • #2
    It could easily be that you have a mild case of IC. Antibiotics can have anti-inflammatory qualities so that could be one reason you feel bettwe while taking them. If you continue to feel okay, you may not need the cysto, but it can be a valuable tool in making a diagnosis. If you think about it, if you have a sore throat your doctor will want to look at the throat --- if you have a sore bladder, he/she may also want to have a quick look to see if there's anything obvious causing discomfort. They can also measure your bladder capacity. I haven't heard of anyone having permanent damage from an office cysto --- there can be a little irritation for a day or two. I find that if I relax for the procedure it isn't too bad.

    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
      Hi Donna

      Many thanks for your reply. He actually meant go straight to cysto with hydro under General...and I just felt that was going too fast? Surely normal in-office first makes better sense?

      Comment


      • #4
        wow. i didnt know that about the cystos. they said im still irritated from mine which was almost a month ago now.i dunno if they put you to sleep with the in-office one or not alot of people say they got to watch on the screen what the dr was doing. i think they do numb you though so you cant feel it.personally i enjoyed being knocked out so i wouldnt have to deal w/ the pain.. but i would have liked to be able to view what the dr was looking at on the screen and got aN explanation of why he diagnosed me with this.
        Newly IC diagnosed as of February 2011.

        Medications I'm on that seem to work:
        Zoloft- one once a day
        Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

        Failed Meds:
        Elmiron-after 4 months,digestive side effects got to be too much
        tramadol-allergic
        DMSO treatments(5-6)
        probiotics

        THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
        AROMATHERAPY-candles,incense
        Village Naturals Aches and Pains Peppermint Bath Salts
        Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

        ACUPUNCTURE/HERBS
        Significant pain relief so far.

        MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

        Add me on facebook Angela Hasic

        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
        Lord, make me an instrument of your peace;
        where there is hatred, let me sow love;
        when there is injury, pardon;
        where there is doubt, faith;
        where there is despair, hope;
        where there is darkness, light;
        and where there is sadness, joy.
        Grant that I may not so much seek
        to be consoled as to console;
        to be understood, as to understand,
        to be loved as to love;
        for it is in giving that we receive,
        it is in pardoning that we are pardoned,
        and it is in dying [to ourselves] that we are born to eternal life.

        Comment


        • #5
          cystro/hydro has to be done while you are not awake, because it would be to painful. It will show whether or not you have IC. Then you would be able to start a treatment plan. I wish you the best and let us know how things turn out.
          <center>
          <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
          </center>

          Comment


          • #6
            Hi Elliel,
            You sound like me for years, frequency only. I didn't know if wasn't normal either, I just thought I had a "small" bladder (which I found out I don't). After my daughter was born I'd get pressure, pretty bad urgency too with spasms that kinda felt like I was being poked in the bladder and I better find a bathroom fast, though I never had an accident. I always went 10-12 times a day too. I think if you are not having pain a cysto under GA seems premature and unecessary to me! IMHO

            Seriously, sounds like overactive bladder or mild IC which can be diagnosed by a uro by symptoms. According to my UG, overactive bladder has the frequency, urgency sometimes, incontinence (for some, not me), but no pain. Because I get discomfort, and some foods definitely "hurt" me in the looser sense of the word, he diagnosed me mild IC.
            My UG didn't think I should have the cysto under GA unless I was having pretty severe pain, what is the point? He said he'd treat me with the same medicines either way. If I was having pain he'd recommend instillations. But, of course they all do not think alike do they? He did do the office cysto to rule out cancer and to make sure my bladder looked healthy. It was a 10 minute procedure, there was a screen I could watch where the camera was and he was talking to me and pointing out what he was looking for in my bladder. They filled with sterile water until I really felt like I had to go (not painful), drained it to look for blood then re-filled it and had me pee it out and I was done. Afterwards they gave me a pyrdium and a macrobid to ease any residual discomfort and to prevent a uti from the catheter.

            Started me on vesicare which is an anticholinergenic and relaxes the bladder muscle so it doesn't contract and tell you its full before its time. Also gave me the diet and had me start a bladder re-training progam which has helped alot. The vesicare worked really well but was too drying for me so am now on nortriptyline which seems to be doing the same thing and is helping with the frequency.

            As far as your question could it be anything else? I guess if they do the office cysto and everything is ok then in my case the next thing was its either oab or mild IC, so I guess NO according to my UG as I assume he would have mentioned another disease to me that caused frequency.

            BTW certain foods, mostly drinks make my frequency MUCH worse, so good thing you are starting the diet. Its the same diet whether you have either condition.

            Good luck, see if they'll do the office cysto to make sure everything is ok with you
            Last edited by cmclien; 02-19-2011, 11:35 AM.
            Cindi


            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
            Great treatment flowchart on page 19 of the pdf

            Comment


            • #7
              I wonder why your Uro does not try an overactive bladder medication first to see if that helps.. My uro said that cysto? Hydro way too painful to want to be awake for it..
              God brought me to it, He will bring me through it!!!

              Diagnosed 2003
              by cysto/hydro
              Elmiron took almost a year- made me sick, caused diarrhea
              Pyridium -Made me sick
              Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
              Tried DMSO instill- had 5 out of 6
              Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
              Cysto/hydro April 6th 2011-- on expansion only hold one cup
              IBS/ IC
              High blood pressure meds and Crestor
              Metformin (prediabetic)
              Sinequan (depression)

              Comment


              • #8
                Thank you all, that does re-enforce my thinking. Going under (which is not to be taken lightly) and having the hydro at this stage seems a bit too much too soon....so I will push for the in-office cysto. Cindi - I love the sound of uro - he is fab! I wonder if he has a twin in England ;-)

                Angela - I read before how much you are suffering with the after effects - I'm so sorry for the pain you are going through. Have you been able to get back to your doctor yet?

                Comment


                • #9
                  Yes, you would definitely want to have an anesthetic for a hydrodistention. This has been a major treatment for me for my 36 years with IC and I have had over 40. I plan to take it easy for a few days after having one, but my pain is actually less the day after a hydro than the day before.

                  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


                  • #10
                    thank you Donna...my gyne just brushed off my concern saying - "oh it's fine, no trouble". But it does take a little time to recover so I don't want to do it before they do other tests first.

                    Comment


                    • #11
                      elliel-my dr has been out of town for 1 full week so i finally had to find some relief at the er.got my pain meds refilled,got a foley cath put in cuz i couldnt pee,some antibiotics..they found i had another uti. i actually accomplished more at the er than i have w/ my dr so far.i am not feeling pain at the moment, it comes and goes.
                      Newly IC diagnosed as of February 2011.

                      Medications I'm on that seem to work:
                      Zoloft- one once a day
                      Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                      Failed Meds:
                      Elmiron-after 4 months,digestive side effects got to be too much
                      tramadol-allergic
                      DMSO treatments(5-6)
                      probiotics

                      THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                      AROMATHERAPY-candles,incense
                      Village Naturals Aches and Pains Peppermint Bath Salts
                      Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                      ACUPUNCTURE/HERBS
                      Significant pain relief so far.

                      MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                      Add me on facebook Angela Hasic

                      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                      Lord, make me an instrument of your peace;
                      where there is hatred, let me sow love;
                      when there is injury, pardon;
                      where there is doubt, faith;
                      where there is despair, hope;
                      where there is darkness, light;
                      and where there is sadness, joy.
                      Grant that I may not so much seek
                      to be consoled as to console;
                      to be understood, as to understand,
                      to be loved as to love;
                      for it is in giving that we receive,
                      it is in pardoning that we are pardoned,
                      and it is in dying [to ourselves] that we are born to eternal life.

                      Comment


                      • #12
                        Cysto/hydro

                        I had my cysto hydro directly after being diagnosed by symptoms. I was glad to have it done as it was more I information. Also, my symptoms were SO severe that I sat in my uro's office crying due to the pain urgency and frequency. It didn't make any sense to me to wait. Also, my recovery was pretty easy. I had I what I would call soreness for 4-5 days and that's about it. It didn't help my original symptoms but it did give me a definite diagnosis and something to work with rather than wondering, worrying and guessing
                        Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                        Lexapro-20 mg
                        Aciphex
                        Ambien-as needed
                        Percocet-7.5 up to 3 per day as needed
                        Valium-10 mg x2 per day
                        Phenergan-1 at night
                        Prelief w/everything
                        Now recovering from acute pancreatitis

                        Currents treatments that help somewhat:
                        Heating pad
                        Hot baths
                        Ice
                        Being VERY still while lying down with legs elevated

                        Comment


                        • #13
                          Angela - so glad you finally got some help.

                          Katie - I take your point about getting an answer but I don't have pain yet so I wonder why he's so keen to do it so quickly

                          Comment


                          • #14
                            Originally posted by elliel View Post
                            Angela - so glad you finally got some help.

                            Katie - I take your point about getting an answer but I don't have pain yet so I wonder why he's so keen to do it so quickly
                            You don't have to have pain to be diagnosed. I personally just wanted to know why things had gone so wrong and if that test could tell me and then possibly give me more options for treatment in the future, I was ready. And was glad that my doctor was being proactive instead of waiting to see if things got worse.

                            Of course, it's always your choice. That was mine.
                            Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                            Lexapro-20 mg
                            Aciphex
                            Ambien-as needed
                            Percocet-7.5 up to 3 per day as needed
                            Valium-10 mg x2 per day
                            Phenergan-1 at night
                            Prelief w/everything
                            Now recovering from acute pancreatitis

                            Currents treatments that help somewhat:
                            Heating pad
                            Hot baths
                            Ice
                            Being VERY still while lying down with legs elevated

                            Comment


                            • #15
                              I am pretty sure without any pain there would be no reason to do this procedure as they are looking for ulcers, tears, pinpoint bleeding in the lining.
                              Even my GP was willing to start me out on oab meds first to see if they would work for me. Will your gyne prescribe this? or your regular doc to see if it even helps you? Can always see a uro unless your gyne seems super knowledgeable on the subject.
                              Cindi


                              Gelnique for frequency/urgency - works great
                              Macrobid after sex
                              Prilosec, continuous birth control pills
                              synthroid .088mg, mucinex-d, restasis

                              Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                              Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                              IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                              AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                              AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                              Great treatment flowchart on page 19 of the pdf

                              Comment

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