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Cysto or no Cysto?? Help!

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  • Cysto or no Cysto?? Help!

    Finally got in with a uro that treats IC... he definitely thinks I have it based on my symptoms but right now my symptoms are light (figures - I had to wait 6 weeks to get in to see him and my pain/pressure slowed down) so he didn't recommend the cystoscopy. He said it can sometimes make things worse...
    He recommended the diet along with ibuprofen for pain. I always have pressure- especially at night when I go to bed, but for the most part I am living with it.

    Should I wait until I have worse pain or a flare and then ask for the cysto and maybe a bladder cocktail? I feel like I am doctoring myself --- or is this the normal life of mild IC? Any and all suggestions are greatly appreciated. I am so glad I joined this network.

    Peace & love,

  • #2
    If your symptoms improve with just diet, that's great --- and you may not need to have tests done. It sounds like you have found a good doctor. If you continue to have problems, or if it gets worse, you'll want to make another appointment.

    Warm hugs,
    Stay safe

    Elmiron Eye Disease Information Center -
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    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.

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


    • #3
      Thanks Donna, I'm so glad you responded. I have learned so much from your experience and postings. So thankful for this network and people like you. I feel better already.



      • #4
        My symptoms came and went at first and by the time I got to the uro they had subsided somewhat that day so I wasn't sure if I wanted the cysto either. I think the only reason I did agree to it was to rule out possible bladder stones and cancer. I asked for mild sedation so the uro was actually able to do a partial distention also. I was glad I had it done, but I won't have another one.


        • #5
          Cysto make me worse so if I was you and don't need it I would put off having it.

          But Ibprofan bother's lots of people, not all but most people with IC avoid NSAIDs.

          My are with you all. May you all find a way to peace and joy in your lives.


          • #6
            your doctor is correct the Cysto may make things worse (as for me any way) I was in pain for 3 weeks after my Cysto it was not fun. Hopefully you will continue to improve and won't need the procedure.
            IC diagnosis 3 weeks ago.
            Vesicare 10 mg once daily
            IBS and Gerd-Zegerid
            IC diet
            Elmiron 100 mg three daily
            Hydroxyzine 25 mg at night
            Amitriptyline 10mg at night
            Diovan 60/12.5 daily
            Topral 50 mg daily
            Zoloft 100 mg at night
            Klonopin .5 twice daily


            • #7

              I am in the same situation my last cysto was in 2003 and the dr I am seeing now want to do one I am afraid that I will be in pain for a couple of months due to this?


              • #8
                Just chiming in for the pro-cysto. I am glad I had mine done. It was really a relief for me to know exactly why my bladder was so screwed up. I had mine done under general and it did not make things worse for me. I had a touch of pain afterwards but nothing I couldn't handle. Best of luck in whatever you decide!


                • #9
                  Originally posted by nineteenwinters View Post
                  Just chiming in for the pro-cysto. I am glad I had mine done. It was really a relief for me to know exactly why my bladder was so screwed up. I had mine done under general and it did not make things worse for me. I had a touch of pain afterwards but nothing I couldn't handle. Best of luck in whatever you decide!
                  I am getting that done next week.. under general. I am nervous.. how was it?
                  -Pammylynn Rose
                  Wishing everyone a pain free bladder day!

                  Painful symptoms start in May 2011
                  Diagnosed with IC in Aug 2011

                  Axert (only for rare migraines)
                  Strict IC diet
                  Gluten/dairy/egg free diet


                  • #10

                    Yea its scary
                    I guess I am still going to think about it?


                    • #11
                      Originally posted by Pammylynn8 View Post
                      I am getting that done next week.. under general. I am nervous.. how was it?
                      Honestly not bad at all. It was my first time being under anesthesia and I was pretty terrified but I was pleasantly surprised. Compared to a weeklong flare it was quick and easy (and they have better pain meds there; but I didn't need them.) The hardest part for me was the going 12 hours without drinking anything.

                      I went for pre-op a day before the procedure. I asked and got answers to all my questions. Went in around 10am. They hooked me up to an IV and I changed in to a gown. About an hour later I went down to pre-op. It was freezing but they brought me all the warm blankets I wanted (loved this part). I was given a mild sedative there to help control my frequency (getting up to go was a challenge at that point between the bathroom being far away and dragging and IV. But don't worry if you can't hold it they will let you go I was just getting exhausted at that point. Then they went over all my information again and I spoke with the anesthesiologist and got my spiffy surgery scrubs hat (the one that looks like a shower cap). Then I was wheeled in to the OR. Lots of people in there (like 5 -- no idea why but they all had different jobs.) Then they transferred me from my wheeled bed to the operating bed. Then they stuck electrodes (or whatever those round sticker things are to monitor vitals). It's funny they left 2 on me on accident and the most pain I had from this all was taking those off later that day. Ouch haha.

                      About 5 minutes later they were ready to go and he told me, "OK, time to go to sleep, see you in recovery!" And they injected the anesthesia in to the IV and I remember thinking, "This isn't even making me sle..." Oddest feeling ever but I kind of liked it.

                      After I was under they put my breathing tube in and did the cysto and hydro. Less than an hour later I was waking up in recovery. I had a pretty gnarly headache but I was able (though still kind of out of it) to say, "Pain, head." Then a nurse was like, "Do you have a headache hun? I can give you something right now." Literally no more than 10 seconds after the meds hit my IV the headache went completely away. I did not have any nausea, but that also is quite common right after. So like they did for my headache they can give you something right away for that. I was expecting to be really cold since people say that is common after the anesthesia too but I wasn't. I had like 4 heated blankets.

                      After about a half hour in recovery (that time really flew; I guess because I was still so out of it) I was pretty much awake. Still a little drowsy (like apparently my Uro talked to me and showed me pictures but I have NO memory of that at all.) If you're going there alone make a note to ask the doctor to also talk to you back in your room/upstairs bed (where you gowned up and had the IV) or write it down because if my mother wasn't there I wouldn't have remembered what he said at all. I think he knew this but it's like habit to tell patients what went on lol.

                      Then I was wheeled (in bed) back to my room. By then I was pretty awake. They also ask you there if you're in any pain or nauseas either from the procedure or anesthesia. I was fine. Then they make you urinate. I was fine to do it right then but they will give you around an hour to go if you're not able right away. Don't feel rushed. I didn't have any pain when I urinated. I do think I am in the minority on this one though; for most people it does burn. (But we're used to that from flares no?). Then they fed me and I drank a butt load of water (not eating or drinking from like 8pm the night before I was starving and thirsty. A dietician came in at that time and we went over the IC diet a little (they gave me a printed copy too). This was my first introduction to the diet.

                      It was at this point my mom showed me the pictures and re-told me all the Dr. had said, "Yep she has IC but everything went smoothly. Take her home and make sure she gets plenty of rest" He also gave me about 5 prescriptions for post op. Almost all my below mentioned meds. Then it was time to leave. They wheel you out of the hospital which made me feel silly because I could walk just fine he.

                      I was feeling so good that I went in Rite-Aid with my mom to pick up my prescriptions. I went home after. That first day and night I had no pain at all. The second day through the fifth day I did have a little pain (mine felt like an ache -- basically like someone had stuck a camera through my urethra..oh hey lol). I never did have pain when urinating. All my pain was just soreness. I was not smart with my resting. One day I bent down to pick up my laptop and three hours later oww. When they say rest, rest. Even if you feel fine rest. For at least a few days I would say do the best you can to stay in bed.

                      I also had a sore throat for 2 days (from the breathing tube, it dries out your throat). But it was nothing I would have taken even Tylenol for.

                      I did experience a reaction from the anesthesia. For a few days after the cysto I was pretty nauseous. It would come in waves. I had 0 appetite. It was kind of like a light flu. I was also given anti-nausea medicine after my cysto (they gave it to me in case the pain made me sick) and taking those made it 90 percent better. I don't think this is common though.

                      Wow this is really long but I would have wanted to read someone's story before my cysto. Of course it is going to be a little different for everyone but I just want to put it out there that it is not horrible for everyone. So there is some hope! Getting the pictures and a reason WHY my bladder looked like it did made it all worth it to me.


                      • #12

                        I have had to hydro's with cystoscopy. I have them under general anesthesia. I also stayed in hospital over night with a saline flush with a catheter overnight. I will tell you that the first week is a breeze. No pain or anything unusual. The second week is always the worst. This is when I start having the actual IC flare. By the third week, I start to be able to have a really long and good urine flow with hardly no pain in the bladder....The first one was done in January and lasted me with NO symptoms at all until August 8 when I had the second hydro. It seems as I am having the same success with this one as the first one. I thank GOD everyday that the Hydro works for me. What would I do without it. I would suffer greatly. You do have to expect some time of flare for 3-4 week after the procedure. I assure you this is a drop in the bucket compared to the relief I have. I do not have to take any pain medicine. I was in complete remission and I hope that happens to me again. Good luck with your procedure. Just remember it takes time to get results from this.


                        • #13
                          Really? I haven't had a flare yet. It's been about that 3-4 week mark for me.