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  • cysto / hydro - scared

    Hi all,

    I've got a cysto with hydro (under general anaesthesia) scheduled in a couple of weeks, and I'm completely scared. I've heard that it DOES help many women, but I've also read some horror stories, too.

    One part of me wants to back out, but the other part of me really want to find out if IC has been causing my symptoms for the last 5+ years!!!! I need to know!!! Perhaps that has been the worst symptom of all of this - not knowing.

    So, what was your experience with the procedure? Has the procedure helped you? How long will it take to recover? I'm taking the day of the procedure off and the next day. Will that be enough?

    Thanks so much.

  • #2
    I know how you feel. I was really scared about the hydro/cysto but my uro said it was the best way to diagnois IC and I believed him and trusted him so I did it. When I woke up I was in some pain but the dr gave me vicoden and that helped and the also gave me something in my IV to help with pain.

    I personally felt like I needed more than just the day of and day after off. I took off the day of, which was a Wednesday, Thursday, and Friday. I planned to go back on Monday but still just felt really wiped out and took off Monday too. My bladder pain was only worse for a couple of days and nothing I couldn't handle with the vicoden. I was just really tired all the time, maybe it was my body trying to heal I dont know.

    I had also read some of the horror stories that you talk about. I would suggest that you at least call and ask the nurse some questions if you can't talk to the uro again before the procedure. I specifically asked him if any of his patients were made worse by the procedure because some here have been. He said that had never happened to any of his patients, I believed him and trusted that he does a good job w/ the hydro's and did it. I wouldn't have done it if he wouldn't have answered all of my questions for me. I hope this helps. I just had mine done in April, lots of people will be happy to speak up about it I'm sure.
    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


    • #3
      I had my 4th one done last Thursday. I was out of it until yesterday. I would probably suggest that you take more time off. It sometimes takes up to two weeks for you not to feel your bladder afterwards. Be sure they give you script for pain meds and something like Pyridium, etc. Good Luck. It really helps my frequency and the effects last for about 4 or 5 months. I kindof have a standing date with uro twice a year to get this done (that way I only have to meet my deductible once). Good Luck. I suffered with IC for about 20 years before officially dxd. I thought I was crazy. I had constant pelvic pain (right side) always had to go to the bathroom, thought I had cronic uti's but when I would go in to gp, negative, so it was somewhat of a relieve to know I wasn't crazy. Good Luck

      Comment


      • #4
        Hi Kttex,
        Don't be scared. I have had 2 of them and will be going for a 3rd. The first one I did need about 3-4 days off of work because I think they really do play pinball with your insides when doing the diagnosis because they are also ruling out other things (bladder cancer, etc.) so it is a good idea to have one done if only just to know for sure that you don't have something else happening. The 2nd hydro/cysto I had done, as soon as they woke me up they gave me a Pyridium pill and I was good to go.....could have drove myself home and partied the night away I felt that good. I think the reason being is that the 2nd time the doc wasn't searching for 'other' causes, he went straight to the bladder and did what he had to do and got out.....no pinball playing the 2nd time!! Don't be scared, it is one of the best ways to diagnose IC, so it is probably worth doing it once anyways and that way you will know for sure if it is IC or not.

        Comment


        • #5
          I have to agree that you will probably need a few more days off. When I was working, I would schedule for a Tuesday or Wednesday and return to work the following Monday. I have had forty hydrodistentions during my 32 years with IC and each and every one has helped my symptoms. I can't imagine what my life would have been like without them.

          As with any procedure, there is some risk, but I have never had any real problems.

          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


          • #6
            I had my first one about a month ago, I felt the same way you do, I almost back out several times, but I really needed to know if I had IC. So I did it and it was the best thing I ever did. I found out I have IC and now with diet and medication I have started a new life with IC. I took the day of the procedure and the next day off and then I went back to work, I probably should of took a few extra days, but I only work part time so I was fine just working 5 hours that first day back to work. You will have to for sure take the next day off after the procedure because before you leave the hospital they tell you not to drive for 24 hours after the procedure.

            My Dr did tell me after the Hydro the pain would be worse before it got better, and he was right the first 2 weeks I felt okay but after about 3-4 weeks I feel really good. I have really been watching what I eat and that has helped tremendously. You have to get through the rough patches but eventually it does get better. My Dr gave me Elavil for the pain, I can't take it every night because I get so tired I can't wake up in the morning. So I just take it as needed.

            This is a decision only you can make and you just have to go with your gut. I am so glad I chose to have it done. It helps too, to have a supportive spouse or family member with you and to talk to about this. Even though they might not understand our pain, it helps to have someone to talk to and be supportive of what you choose to do.

            Good luck with your decision.
            Sue
            Dx with IC April 30 2007
            Dx with Endo Sept 2007
            Supra Cervical Hysterectomy April 9 2009

            Comment


            • #7
              I forgot to mention that even after having hydros for 32 years, I'm nervous every time.


              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
                hydro's

                I am a mother of twins, one with IC as well, age 11. I have had two hydro's. The first, no pain. The second, terrible. My daughter experienced terrible pain for 2 days as well. I think it's necessary to be diagnosed, but I do think you may be able to ask for some things to help out with the pain upon waking. Ask the doctor if giving you vicadin while your asleep and before you wake up is an option. Also get a hold of some Pyridium ahead of time to take right after. These two things do help alot!! If he can provide you with these things and have you medicated with them by the time you wake up, you should be fine. I had symptoms since age 15, but not diagnosed as IC till age 40. It's a long wait to wonder what is wrong. I am currently taking Elmiron, although I think it does not really do much. I am also trying a chiropractors suggestion of "oil of oregano". I have taken it for 5 days now, and I do not need Ibuprofen anymore, so far. I get the emulsified tablets, 50mg, and take them twice a day. They control the burning, and they are also great for alot of other ailments. Good luck, and don't be scared, be prepared.
                Leanne and Kelsey

                My symptoms started age: 15
                Have had re-occuring bladder inf. some positive, some negative. Years of unnecessary antibiotics.
                Finally diagnosed with IC age: 40
                I work full time and I am a mother of 6 actually, twins of my own and 4 children from my husbands first marriage. He has a set of twins also age 10. All together 5 girls , and one boy


                Daughter age: 11 years old (one of twins)
                Diagnosed with IC in May of 2007 after I finally convinced the doctor that her syptoms were like mine. Doctors don't think this happens in young children. Cysto and Hydro showed she has IC.


                Meds:
                Elmiron- 3x a day (dont think it's really working)
                Deterol- once a night every other day
                Trying Oil of Oregano- suggested by chiropractor
                (50 mg, twice daily) (has taken my pain away, no more need for Ibuprofen)

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