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Cysto/Hydrodistension scheduled for this Friday 9/30

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  • #1

    Cysto/Hydrodistension scheduled for this Friday 9/30

    So I have just about tried everything and have decided that the hydro is my next option. I tried instills and had terrible urethra pain and bladder cramping afterwards so they do not think that is a good option for treatment. The meds I am on are working a bit but not enough to really make my life livable again. I am constantly at a 9 for pain and have decided it can't get much worse so let's give this a try. I would like to know who has and hasn't had success with this and if you haven't what options have worked for you. I am curious as to where I go from here if this doesn't work but I am going to be optimistic and put my faith in this procedure. I really hope this works for me and hope you will all keep me in your prayers this Friday 9/30/11. Please, please send me your thoughts and prayers this Friday. Thank you and it will be an outpatient procedure but I will be put under for it.

    Jessica
    Take:
    Elmiron 2 twice a day
    Cymbalta once a day
    Low dose Valium once a day
    Atarax once a day
    Lydocaine gel as needed
    Tramadol as needed
    Oxycodone as needed

    Diagnosed with severe IC April 2011

    Suffered for 8 years without a diagnoses
    I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.
    Tags: None
  • #2
    Jessia I have had four HYDROS., No CYSTO that I know of. Three of them helped very soon. The last one took much more time. I hope your Doctor has done many of these. Mine has and knows what he is doing. Baby yourself for at least 4 days. Don't expect to be feeling different right away but in my case it helped greatly with pain and frequency. I will be Praying for you and please keep us informed. Every bit of information put on this site helps others. Hugs, Ziggy

    Comment

    • #3
      Hello Sweet Lady
      I too, will keep you in my prayers. I am new to this board but I have found answers and hopefully will make new friends. Good Luck
      Elmiron 100mg 3x day
      Pyridium
      Elivil 25mg 1xday



      "I'd trade every moment under the sun for just one moment with The Son"

      Comment

      • #4
        Thank you, Thank you for your replies and your prayers! I appreciate it so much and am nervous about tomorrow but I have confidence in my doctor. I will let you know how it goes and please keep praying.

        Jessica
        Take:
        Elmiron 2 twice a day
        Cymbalta once a day
        Low dose Valium once a day
        Atarax once a day
        Lydocaine gel as needed
        Tramadol as needed
        Oxycodone as needed
        Orthro Evra patch continuously

        Diagnosed with severe IC April 2011

        Suffered for 8 years without a diagnoses
        I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

        Comment

        • #5
          Hi, Jessica ~ Prayers that all will go well tomorrow and you'll be feeling the best ever!!!

          Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so 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

          Comment

          • #6
            No worries. trust me. I had my Hydro and Cysto done yesterday. Today I feel great..I had just a "tad" bit burning the 1st time I pee'd but the Dr gave me some Phenazopyridine (it numbs you so you dont feel the burn). I took one and Viola! The burn went away. . I have been on Elmiron for 2 weeks and I can tell you it has worked very well for me...Your still in my prayers. Keep us posted. You are not alone.
            Elmiron 100mg 3x day
            Pyridium
            Elivil 25mg 1xday



            "I'd trade every moment under the sun for just one moment with The Son"

            Comment

            • #7
              I'm thinking of you today and hope you will experience some relief from your procedure.

              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

              • #8
                Thank you so much for your thoughts and prayers. Here is a quick update, surgery went very well and he did find quite a bit of inflammation and bleeding in the bladder wall. He said he sees this with severe IC so my diagnoses is completely confirmed at this point. He said the hyperdistension went well and I will be seeing him in 3 weeks for post op. To be honest I am already feeling a bit better. I am having some bladder cramping and burning when I urinate but the pain I was having that was a 9 and in very specific places is not there any longer. Overall I am very optimistic and think that this treatment has helped. I will of course let everyone know within the next week or so once the cramping and burning goes down and I can get a better sense of my recovery. I am so thankful for this forum and so appreciate everyone support.

                Thanks again,

                Jessica
                Take:
                Elmiron 2 twice a day
                Cymbalta once a day
                Low dose Valium once a day
                Atarax once a day
                Lydocaine gel as needed
                Tramadol as needed
                Oxycodone as needed
                Orthro Evra patch continuously

                Diagnosed with severe IC April 2011

                Suffered for 8 years without a diagnoses
                I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

                Comment

                • #9
                  Hope you are feeling better or on the way to. I had one done on the 23rd. It was my 15th 16th one (can't remember) I stayed home on Monday and Tuesday of last week; went back to work on Wednesday. Still have some pain and discomfort but doing fine.

                  Comment

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