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  • #1

    Should I do this or not?

    Hi thanks for viewing,

    I've been contacted by some wonderful people who provided me with excellent information about managing IC. However I'm scheduled to have my first hydro/cysto done in 4 days and have been warned not go through with the procedure. As I am already nervous about the pain afterwards because I do suffer from extremely painful flares. Is this going to be okay? I know a lot of members have had it done but apart of me really wants an expert opinion on the inside of my bladder. Should I really do this or is this just asking for more intense pain? I've been dealing with IC pain since 2003, I'm 26 yrs old and I think I reached my breaking point on dealing with flares. Ohhh what to do what to do!?!
    IC symptoms since 2003
    Diagnosed with IBS in 2004
    Diagnosed with IC in 2009
    Pelvic Floor Dysfuntion 2011
    Possible Fibromyalgia

    Meds that don't work for me:
    Flexeril, Cymbalta, Librax, Buspar,Vesicare,
    Ativan, Pyridium, Amitriptyline, Elimiron

    Meds taking now:
    Tramadol, Prelief

    In order to see the rainbow you gotta make it through the rain; praying for them better days!
    "Be kinder than neccesary for everyone you meet is fighting some kind of battle"
    Love my life as a Mommy and Wife!
    Tags: None
  • #2
    Whether you have the hydro is, of course, your decision. The procedure does help some people, others report no change in symptoms after the recovery period. I am, fortunately, in the group who is helped and I've had over forty hydros in my 36 years with IC.

    If you're able to control symptoms with diet and medications, I think that's great.

    Warm hugs,
    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
      I am in the same boat... I am not sure if I really wanna go through with getting a hydro because I have been told it can tear the bladder more in some cases... It does seem to work for some apperantly though!! It could be exactly what you need to help with flares!
      28 yrs old,

      I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

      What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

      Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



      Me in my graduation gown!

      Comment

      • #4
        For me personally the hydro didn't help my IC but I was glad to find out what condition my bladder was in. I didn't have a bad recovery afterwards. Whatever you decide to do I wish you the best.


        Sandra
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment

        • #5
          Do hydro help people with more severe IC, moderate or mild? Does anyone know?
          Teresa

          We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

          Comment

          • #6
            Teresa,

            I have severe IC and it didn't help me but I think it is a completely subjective thing. If you have hunner's ulcers they can remove them and that can help, otherwise I don't think there is any way to know who it will help. Much like all the other IC treatments, trial and error.

            Sandra
            Link to the patient information, everything from What is IC? to Disability
            http://www.ic-network.com/patientlinks.html

            American Urological Association Clinical Guideline
            Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
            http://www.auanet.org/content/guidel...ent_ic-bps.pdf

            Comment

            • #7
              I just had a cysto/ hydro on Wed.. It went well.. I am doing well.. Still a bit sore and frequency is up..but I am glad I did it.. This is the 2nd one I have had..I have a very tiny bladder and even with expansion can only hold a cup.. I don't know if it will help me.. but it is a peace of mind too.. to make sure there is no cancer and know how things look.. I don't see my Uro until the 12 and will find out more then.

              I know it is a hard decision for each one of us..I hummed and hawed about it --

              The nicest feeling when I woke up was I could not feel bladder lol-- I said gee my throat is really sore but I can't feel the bladder.. He said they put something to numb it ..that wore off but sure was nice for a bit lol..

              It has to be your decision.. but I know I am glad I did it...

              take care
              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
                I really didn't make the decision to have the hydro as I had asked my dr. to give me sedation for the regular cysto and I reacted so well to the sedation he decided to do the hydro while I was there. It didn't have any effect on me one way or another. It did though give me peace of mind to find out I had no bladder stones, ulcerations, or cancer. No pain afterward, but no improvement either.

                Comment

                • #9
                  It's your choice. Only having 4 days to do your own research seems a bit rushed though. I usually like to read into what to expect and have time to brace myself for whatever it is. Are they doing it for treatment or diagnosis?

                  earthlady: what type of sedation did they give you? When they try to give me the "calm down" medicines for unrelated procedures it never helps.
                  • 27 year old student
                  • Had symptoms since I was 5
                  • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                  • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                  • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                  • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                  Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                  What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                  What didn't work: Elavil, vistaril (12/22)

                  Comment

                  • #10
                    They gave me Versed- the same sedative they give for colonoscopy and endoscopy. I think he also gave me an injection- possibly in the pelvic floor somewhere. I don't remember the procedure itself at all, but I sure was calm as soon as he put the iv in. No drugged up after effects either.

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