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Cysto/hydro experience that doesn't work?

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  • Cysto/hydro experience that doesn't work?

    At the beginning of August I had my first Hydro/cysto and was stretched to 900. Before I could be cath-ed my bladder had filled to 950 ccs. They told me the pain would last a few weeks longer because of it. I was cath-ed for 3 days and developed a terrible infection from it. After the medications worked through and the cath was removed I spent 4 days at the beach. The pain was 80% better. felt normal for the first time in 3 years. After returning I found that my bladder was not getting better but worse. My urgency has gotten worse and the pain is 5 times worse then before I had the surgery. The only thing that has really gotten better is my frequency. Dr. Evans (my uro) told me I just has mild IC and that he was almost positive this surgery would help. So my question is, where do I go from here? I started back on the Elmiron but that'll take 3 months to kick back in. I was on the "trio" and the anti-depressant made my frequency worse so I stopped that.
    He said something about putting a pace maker in my spine but I REALLY want to avoid that if there is anything else I can do. So where do I go from here?
    Last edited by ICNDonna; 10-08-2011, 02:06 PM.
    "Blindfolded fear does not lead to an awakening. Questioning with boldness does":woohoo:

    Diagnosed: Autoimmune Progesterone, P.F.D., Vulvodynia, IC.

  • #2
    There are a lot of treatment options. If you look through the forum and the handbook you will see some of the oral treatments mentioned and the instills available to try.

    The diet, which you will find a link to in my signature line, is also a huge help to many of us.

    The procedure he is talking about is probably the Interstim. Some people have had good luck with it and many have had problems. It should be considered a last resort treatment option when other treatments have been tried and failed. Then at that point you really need to research the procedure and learn the pros and cons of it.

    It does take time to see what combination of therapies will work for you. I hope you start turning around soon.

    "Life is what happens when you are making other plans" John Lennon

    IC diet cheat sheet....

    Information for Patients can be found here.

    Jen's tips for great IC sex..[/url]

    Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

    "IC Angel 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."


    • #3
      I'm over this Girl!

      Ladies & Gentlemen,
      I'm so glad I found this website to know I'm NOT the only one out there with problems.
      I was diagnosed 6 years ago, went through treatments that worked for 6 YEARS & now I don't know what happend!!!!
      Very long story because I felt my insides were dropping out of my pelvic floor I just had the cysto surgery myself Wednesday 9/28/11.
      Doing a quite a bit better, eat or drink the wrong thing & well I don't need to tell you what happpens next
      Anyway, I'm on Urabrel, Valum, Cysto (whatever) and pain killers.
      I'm 34 years old had hysterectomy 4 years ago & with this, all I do the last few days is feel like crying!!!
      My job is stressful....the unknowing stresses me out!!!! so you can imagine the stress I feel from that....sheeewww

      I really just want somewhere to go where I can have someone to talk to besides my husband who understands me............The friends I have are never there for me & that depresses me & my husband is trying to set me up with his friends wives


      • #4
        Hi, Christine ~ Just want to let you know we are here listening to your frustrations. Sure hope you find that right treatment plan that works for you. Hang in there and be sure to try the diet like Jolene mentioned. It might give your bladder a rest!

        Hi, Ang0023 ~ Wanted to let you know you might have more responses to your particular situation if you repost your entry under the Introduce Yourself Forum. That's designed to let others know and welcome YOU. You've gotten this tagged onto Christine's post regarding her cysto/hydro experience. There are so many of us here to support each other through these difficult times. I know the feeling about hubby is wonderful, but I didn't want to tire him with my constant bladder chat. You sound like things are just overwhelming right now. Sounds like you sure had things under control for quite a while. Are you able to step back a little to see what, if anything, is different in your life right now that might be causing all the trouble?

        Just remember, we're here for each other. Take care and don't be afraid to reach out here.

        Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found can you...keep the hope.

        11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
        8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
        8/2010 Surg gallbladder
        TREATMENTS (updated 4/15)
        IC Diet since 8/2009 (Able to vary 4/15)
        Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
        Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
        Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
        *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
        Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
        PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret


        • #5
          I'm so sorry you had to go through so much after your hydro/cysto! I too had one about a month ago, also with a capsaicin instillation. I have been so much worse since the surgery. No improvement at all, just more pain and frequency. I don't know what to do either, it was kind of my last hope since as you can see in my 'signature' I have tried a LOT of other things. No one has yet mentioned interstim to me and I doubt anyone would because according to my uro my bladder looks normal inside and has normal capacity! I can't even work because my problem is so bad.
          IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
          Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
          Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

          Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
          Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
          Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
          Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH


          • #6
            Thanks everyone for replying! That's why I love this site so much! There is so much support! I am going to keep the spinal fun as a last resort.
            The diet helped but I fail at sticking to a diet for more than a few days. I know, bad! Ha-ha.

            I'm gonna keep looking and see what my dr tells me to do next (although he's pushing for the pace maker )
            "Blindfolded fear does not lead to an awakening. Questioning with boldness does":woohoo:

            Diagnosed: Autoimmune Progesterone, P.F.D., Vulvodynia, IC.


            • #7
              Originally posted by DaniMSC
              I can't even work because my problem is so bad.
              I'm sorry to hear that. I hope you can find some relief soon!
              "Blindfolded fear does not lead to an awakening. Questioning with boldness does":woohoo:

              Diagnosed: Autoimmune Progesterone, P.F.D., Vulvodynia, IC.


              • #8
                Hi Christine,

                I see Dr Evans also, not sure of what all else you have tried but just wanted to let you know that I have always had GREAT experiences with him. It might help if you were to keep a pain journal and a voiding journal. That way you can show him exactly what you are experiencing. I also try to always write down what I want to go over with him. When I first started seeing him I was nervous and afraid I would forget something I wanted to address with him. Now I would probably chase him down the hall if I forgot something! (not really but I am so much more at ease)

                Also, I hope it helps to know that he isn't just suggesting to you a standard treatment that he gives everyone. I have been seeing him for three years and it has never been suggested to me. I have severe IC but I don't have extreme urgency. I have extreme and constant pain, with his help it is under control now. I still have other issues and some are caused from the medications I have to take. What I like about him is that he does work hard to individualize our treatment. He knows we are not a "one size fits all" patient.

                I would suggest you take in the journals at your next appt and ask him to explain exactly what he was referring to previously. He does talk quickly and it helps me to have my husband with me so I can "replay" what we talked about when I leave. Be sure to ask lots of questions and ask where you can get information about risks and possible side effects.

                I always ask him if there is anything new going on as far as treatment for IC. He does have a few trials going usually and he might feel one could help you.

                Hang in there, I hope you are able to find a good treatment plan that works for you.

                Link to the patient information, everything from What is IC? to Disability

                American Urological Association Clinical Guideline
                Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


                • #9
                  I like that he works around people and their problems too. I hate doctors that say "oh bladder issues, take this, that's all you need."
                  I actually started to make a journal! (but forgot to add to it. Ugh!) But you are right, the more I can show him the better he can help!
                  He actually told me I had mild IC and the bladder pain isn't terrible but I have the night frequency and urgency (urgency usually is based on how my day went; stressful=urgency, mild=mild urgency, etc.)
                  I really like him so far! I know I went once (after the surgery) to get my cath out and was there for at least 2 hours, but that's the only time I've really had to wait!
                  "Blindfolded fear does not lead to an awakening. Questioning with boldness does":woohoo:

                  Diagnosed: Autoimmune Progesterone, P.F.D., Vulvodynia, IC.