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  • Hydrodistention- Neg or Postitive Results

    Would like to get your feed back on how you felt about getting a hydro was it a neg experience or a postive experience? Alot of newbys have been asking this question so I thought this poll might help

    Thanks Ronda
    152
    Did you get a positive result from hydo
    56.58%
    86
    Did you get a negative result from hydro
    43.42%
    66
    Last edited by leelee88; 07-07-2007, 01:26 AM.
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN 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.

  • #2
    I guess it was positive in the fact that it diagnosed me, but negative in the fact that it caused me so much pain for so long afterwards. I wouldn't have it done again that's for sure.

    Kari
    Kari

    I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

    Comment


    • #3
      Good poll, Ronda. Great idea!
      I think you probably know how I voted.

      Comment


      • #4
        For me it wasn't good or bad. It changed nothing for me both times.

        Comment


        • #5
          Thanks Briza,
          Im just interested to see what the outcome will be..
          Hugs
          Ronda

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


          Link to Patient Handbook:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



          ICN 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.

          Comment


          • #6
            I put down "positive" thinking you were asking what the RESULTS were.... my results were positive for IC, but my EXPERIENCE was very negative...
            current meds:
            cytotec 200mcg twice daily
            toprol
            allegra

            ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

            dx: hashimoto's thyroiditis 1998
            dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
            dx: endometriosis 2003
            dx: innapropriate sinus tacchicardia 2005

            meds tried but failed:
            elavil (6months)- severe tachycardia
            elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
            a bunch of others



            Me and my best friend's baby (also my Godson!)

            Comment


            • #7
              I would say my hydro was a positive experience. It didn't make me feel worse or better from the actual hydro itself. I think was a positive experience because I finally knew for sure that it was IC. I was really worried it was going to make me worse and really hoping it was going to make me better but it didn't actually change my pain or symptoms at all.
              Christine



              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus

              Comment


              • #8
                Both positive & negative.
                Positive:
                1. Photos & eventual diagnosis
                2. Not worse than before procedure
                Negative:
                1. Cost out of pocket ($1300),
                2. Allergic reaction to antibiotic,
                3. Patient screaming & crying in the next bed in pre-op then listening to me describe symptoms to the nurse & telling me "I was just like you a year ago, now it's so much worse, I can't work or do anything" (great, shoot me now)
                4. Nurse complaining over my bed during this to another nurse about not getting a promotion & raise (gee, I think I can figure out why)
                5. 3 hour wait in preop while listening to #3 & #4 (purgatory)
                5. Having to ask someone to take me to the bathroom every 20 minutes because they wouldn't let me go alone with IV in & no one thought of a potty chair
                6. Post-op nurse telling me I had IC, urologist telling my mother that it "might be IC, but might be a transient irritation & she could be fine in 3 months". That set off months of family fighting, doubting me & judging me when I wasn't getting better. Why he said that while marking my diagnosis down as IC, I don't know. He eventually said it was IC and every other doctor who's seen my photos without reading his comments has said yes, it's IC. If they read his comments, then they start hedging about how it's not clear, but is probably IC. (weasels). My mom developed IC later & he misdiagnosed her as well, the best thing he did was prescribe us Elavil & refer us to the university research hospital.

                ALL THAT SAID, IT WAS STILL WORTH IT TO GET A DIAGNOSIS.
                (But my mom refused the procedure for herself after accompanying me to mine...)
                Kadi

                -------------------------------------------------------------
                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.
                ------------------------------------------------------


                New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                Source - Pinterest
                "


                Current treatments:
                -IC diet
                -Elavil 50mg at night
                -Continuous use birth control pills (4-5 periods/year)
                -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                -Pyridium if needed,
                -Pain medicine at bedtime daily, as needed during the day several times per week
                -Antibiotic when doing an instillation to prevent UTI
                -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                -Dye Free Benadryl 50 mg at bedtime
                -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                -Managing stress= VERY important!
                -Fur therapy: Hugging the cat!

                Comment


                • #9
                  Mine was positive in that it gave me a diagnosis, the hospital staff were wonderful and I didn't feel too bad for too long afterwards. It did not improve my symptoms, but it didn't leave me feeling worse either.
                  Kim

                  Diagnosed August 2001

                  Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                  Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                  I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                  *****************************

                  “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                  “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                  Comment


                  • #10
                    My experience was negative--and all my fault. My Uro had seen inside my bladder from previous kidney surgery--he diagnosed IC from that and symptoms. He didn't think I needed one. Well I had to be sure I didn't have cancer and wanted hydro/cysto (and thought it might give me a remission). I had 5 1/2 weeks of ER pain after. Before the procedure I had 3/4 days of IC pain a week now I have 7 days a week pain. Before I had it done I read that there was a 54% chance that it would make me feel better--I felt that was good enough to hopefully get relief. A lot of people find relief with the hydro I just wasn't one of them. At the time if you asked me if I'd do it again I would have whole heartedly said NO but now I think I'd still make the same decision. I wanted a positive diagnosis.

                    Comment


                    • #11
                      Positive to both- procedure back in 1992 as it finally led after 5 years to a diagnosis!! and Positive as everytime I have one (I think I have had 10 as of last count) they have all helped me - except one. But all in all, I will keep doing them as this is the only thing that helps with the pain and the only treatment that both my Cardio and Uro will agree on due to my heart valve replacement and my using Coumadin which is a blood thinner.

                      Comment


                      • #12
                        Positive! I got a firm diagnosis and my uro knew what we were dealing with and after I finally healed up, which for me took about 8 weeks because of my fibro, etc, I really did feel better for quite a while and had a lot less bladder symptoms. I'm considering doing another one sometime this year.
                        *IC-- Summer 2004; PFD--October 2005
                        *Fibro--Fall 2000; CFS-- Fall 2000
                        *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                        Total Abdominal Hysterectomy--adenomyosis--9\08

                        04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                        Comment


                        • #13
                          Hmmmmmm...Quite honestly, I don't know how to vote on this one. It was a positive thing to do since it gave me a diagnoses and I did not have any problems afterwards, but I am not sure if it was any help with my symptoms like it is for some of us.
                          Sharon

                          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                          Where I can be found most days.



                          Link to the ICN Patient Handbook:
                          http://www.ic-network.com/handbook/

                          Link to the IC Diet:
                          http://www.ic-network.com/diet/


                          IC 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.

                          Comment


                          • #14
                            Negative. I got a diagnosis, but it caused a lot of pain and damaged my bladder further I think.

                            Comment


                            • #15
                              Positive for me, the first 3 weeks after I had alot of pain, which my Dr warned me about but after that I have felt great, as long as I watch what I eat I no longer have pain. I would have another hydro in a heart beat.
                              Sue
                              Dx with IC April 30 2007
                              Dx with Endo Sept 2007
                              Supra Cervical Hysterectomy April 9 2009

                              Comment

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