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  • #31
    Negative and positive; 1) Negative because it put me in a tremendous amount of pain and made me worse, which lead to me having to take sick leave a couple of weeks later. I just could no long work, it was the thing that pushed me over the edge physically. 2) Positive because it documented pictures of my bladder and the doctor could say I had IC. (Although, I disagree this is a sound accurate scientific way to diagnosis IC. We have all discussed this in other threads... Someday, we will have a test or checklist -- IC needs more funding! )

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    • #32
      I agree ads.. We do need a new way to dg IC that is less painful and less dangerous, but with the same effective results..
      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


      • #33
        For those who got worse with the procedure,

        1-is your damage permanent?

        2-Is the damage was done by the hydrodistention?

        3-How much fluid was pump in the bladder?

        Tip

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        • #34
          I didn't vote b/c I wasn't sure what you were asking.
          Result: Positive for IC.
          Experience: Negative!!!!!!!!!!!!!! I would never do it again.

          But I'm glad I did it and that I have a definitive diagnosis that no one can argue with. The photos were nice and made my family and husband feel bad for ever doubting me and for encouraging me to see a psychologist. Other than that, it was terrible. I was in a lot of pain. Urethral burning, bladder burning, with terrible & awful pain that was uncontrolled. I sat in a bathtub for three days after the procedure. I vomited more times that I can count in the first two days. I could not keep pain medicine or bladder medicine in my tummy b/c of the vomiting. My bladder and urethra felt worse for at least three months. I regretted it so much for those first few months wondering WHAT I had done, as I had felt bad enough before, but felt so much worse afterward......

          But at least I have a diagnosis and I'm thankful for that.

          And I'm glad I had no clue as to what I was getting into b/c I honestly trusted my uro when she told me I'd feel fine the next day. Ignorance is bliss.

          So that's my take, I didn't vote though b/c I wasn't sure how to read the question.
          Lee Ann
          Current Rx Meds:
          Atarax, Ditropan, Elmiron
          Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
          Hooray for babies!
          Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
          Didn't work for me:
          Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
          IC (Mod-Severe) since 1996

          UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


          My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

          Comment


          • #35
            Leann I was asking if it was a neg experience... should of made it clearer...
            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


            • #36
              Are you talking about Hydrow/distention also? I may have gotten more capacity for a while, but it seemed that I got worse each time. I think they are very invasive unless needed for dianosis only. I can't say that I would recommend them, but that is just me. Brenda

              Comment


              • #37
                i would say both hydros i have had were positive experiances, both times, the procedure went smoothly and i was feeling better within days and after each one i went into an extended remission period. i hope to have that feeling again someday.

                Comment


                • #38
                  I had my hydo done just last week...So far so good..I didn't have alot
                  of the pain people had talked about here...Actually I took extra
                  strength tylenol for a few days after and didn't have to take the pain
                  med's the dr. ordered for me...the uro told my husband that I had
                  deminished capacity of my bladder and that this procedure should help..
                  well I haven't been going to the bathroom like I use to before the procedure,
                  that I noticed just the past few days.....I have a post op appt with my
                  uro in a few days and I will ask how bad my ic is and what kind of treatment
                  I will have..the only thing I did notice was that my back and my sides
                  seemed to have muscle aches......But I am glad I had it done and I hope
                  that I continue to have positive results for awhile..Right now I would
                  do the procedure over in a heart beat......
                  Patti G.
                  Ic for 4 yrs..
                  Meds
                  Allegra 180mg. when needed for allergies.
                  rhinocourt for allergies when needed
                  levoxyl for hypothyroid 75mg once a day
                  sanctura bladder relaxant 20mg twice a day
                  premarin cream twice a week
                  panatol eye drops for allergies

                  Comment


                  • #39
                    Excellent results.....couldn't live without the Hydro's!!! I get one about every 3 months and takes the pain, frequency and pressure feeling away. They rock!!!

                    Comment


                    • #40
                      Originally posted by mtn123 View Post
                      I wish I would have read here first. I had one 4 days ago and the burning in the bladder and urethra is crazy. They say I need to walk, wow that is so hard when every step moves the bladder and urethra. Well I guess I cannot contibute to this poll quite yet, looks like I have to wait 2 weeks and hope I get back to where I started. But so far its been very negative and has made things very much worse.
                      MTN123 - This might be a silly question but did you try ibuprofen or motrin afterwards to help the inflammation? That was the only thing that got me through the first day after the lidocaine or whatever they used wore off...

                      I have only had one done, primarily to diagnose - took me a couple of weeks to get 'back to normal' - was very tired mostly and the discomfort was not fun the first couple of days...but within a few weeks i was noticing times up to 6 hours in b/t bathroom trips while awake which is unheard of for me...but then i got a bladder infection and it set me back

                      my uro isn't my primary caregiver of my IC, it's weird up here in Canada-he also refuses to treat me on any medication (I've posted about this before I think)...my doctor has me lined up for a new uro soon...but I'm pregnant and limited in options right now!

                      I would have another hydro done now that I know what to expect from them...but not sure if it would ever really help me in full w/out meds...

                      Comment


                      • #41
                        I think I am with most of the others. Negative and positive. Positive because I got a definate diagnosis, but negative because it was so painfull. I woke up screaming that I was in pain and needed to use the bathroom. The nurses treated me like I was nuts. ( I am use to that ). How could I have to go, they had just emptied my bladder? It was just so irritated. I only felt better for a little while after the procedure. I would never have it done again, and I have read it is dangerous, Is this true?

                        Comment


                        • #42
                          daphne, I would think any surgery would have its risk..

                          I had a very bad experience with the Hyrdo/Cysto. But others have had it done with complete success..

                          I would never have it done again either..
                          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


                          • #43
                            Had my first Hydro/Cysto to diagnose IC in July 2005 and also had Laporscopy done at this same time to diagnose Endo.

                            I had relief with my first Hydro for about 6 months or so. It was a very painful recovery. I had a biopsy done and I think the biopsy adds alot more discomfort after the procedure.

                            I just had my 2nd hyrdro done Sept 12th. I had very little pain afterwards. Peeing for the first time after the procedure was VERY painful felt like you were peeing razor blades, definately brought tears to my eyes. I can feel that the Hydro has made a big difference so far, I don't have that constant awareness of my bladder pressure feeling. My frequencey is down considerably. My Uro said I have increased bladder capacity since my last Hydro. He said he also noticed scarring which was not found in my 1st Hydro, but I did have Hunner's ulcers and I think the scarring is due to having the Hunner's ulcers lasered off on the 1st Hydro. I'm not sure if they found anymore Hunner's this time. I will ask when I have my post op appointment.

                            Hydro's have difinately helped me and I will continue to have them done as long as I am getting relief from them.

                            Judy
                            -IC diet
                            -Elmiron: 200 mg/per day
                            - Lyrica: 200 mg/per day
                            -Amitriptyline: (Elavil) 50mg/per day
                            - Vesicare 5mg per day
                            -Atarax: 25mg/per day
                            -Heparin/Lidocaine/Sodium Bicarb instills 5 per week or as needed
                            -Prelief as needed

                            Comment


                            • #44
                              Happy to hear your feeling better. I think it may be time for me to have another.
                              Endometriosis,Fibromyalgia, Severe Adhesions-
                              3 c-sections, Particial Hysterecotmy,Laporoscopy for cysts, Appendectomy, R-ovary removed, IBS, Acid Reflux, Asthma, and the worst of all IC


                              Patty

                              Comment


                              • #45
                                Like alot of other posts: Positive - that FINALLY I had a dx and it wasn't all in my head :woohoo:
                                Negative - that frequency increased afterwards and pain went to 24/7 -

                                However, I am wondering if that could be just the disease progression? Would love to see some research on that.....

                                DX IC Aug 2007 -DX PFD July 2007
                                Severe Allergies since 18 months old
                                Meds:Aterax 25 mg @ night (only during allergy season - now)
                                Valium 2.5 to 5 mg 2x per day for PFD
                                Elavil 50 mg @ night
                                Bladder Instillations (at home) 3x per week -
                                My recipe is: Lidocaine, Heparin and Sodium Bicarb
                                _____________________________________________
                                Meds I could not tolerate: Elmiron and Lyrica

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