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cysto & hydro anxiety

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  • cysto & hydro anxiety

    I have my first cysto and hydro this upcoming tuesday, and I have TONS of fear and anxiety with it. I had to go to the hospital this morning for "pre-admission" counseling. I am just wondering like how it goes, how it feels afterwards, during, etc...any feedback would be helpful. I'M TERRIFIED OF THESE THINGS! I put this OFF for MONTHS!

  • #2

    I'm new too and am facing the same thing you are. I'm scared to death as well. I have done so much reading, probably TOO much reading, and have gotten myself a nervous wreck over all of this mess.

    I was originally scheduled for a week from today as well, but had it changed to the 27th for reasons I wrote about here on the board. Well it turns out I CAN have the procedures on the 20th, if the slot is still open for me. I'm going to call tomorrow to see if they can still get me in then.

    I want to get it over with, yet I'm scared to death.

    If you ever want to talk I'm here. I dont have answers, I have a lot of questions too, but know what you are feeling right now.

    You can private message me and we can talk if you'd like.

    My name is Sandy.......

    I dont want you to feel alone, thats the worst feeling in the world.



    • #3
      I remember feeling so scared before my hydro/cysto, I had nightmares! So, I understand what you guys are going through. kissing

      The best thing I did was tell my doctor exactly what I was afraid of (pain & maybe making things worse). He listened & told me he'd do the absolute minimum to get a good picture & that the choice was mine & I could call it off if I wanted. He came into preop (a lot of doctors don't), reminded me that he remembered our conversation & would be careful. Talk to your doctor! They need to know what you're worried about...

      I had a little more discomfort & frequency than usual the day after the surgery, but no dramatic increase in pain. No blood in urine, no problems urinating, none of the scary things I read. My bladder capacity has been better; after what my doctor told me about capacity (750cc)- I "retrained" my bladder to go less frequently (made me more confident I could hold it). The pictures showed mild IC, which saddened & relieved me. Because of the pictures, I'm now on Elmiron & have a baseline set of photos to compare things to later if needed.

      Although the procedure ended up being pretty expensive & the hospital experience wasn't fun (lots of waiting, overworked nurses, etc), none of what I was really afraid of happened & I'm better off having done it

      Sending you a hug & warm wishes for a speedy and smooth recovery... grouphug

      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!


      • #4
        I have had 35 hydrodistentions in the 29 years since my diagnosis --- and I still get a little nervous every time! Actually the anticipation is much worse than the actual procedure. When you arrive at the hospital, they will put you in bed and take your vital signs --- then give you a medication to help you relax. The rest is easy --- you will be sleepy when you go to surgery and sleepy when you come out.

        The only bad part is the first few times you urinate afterwards --- and that might give you goose bumps --- it always gets me.

        You'll be in and out of the hospital before you know it --- time just flies by when you are medicated and sleep through everything.

        Sending an encouraging hug for each of you,
        Stay safe

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        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.

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        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.

        Anyone who says something is foolproof hasn't met a determined fool


        • #5
          I've had 4 hydro's and they all pretty much went like Donna said. I had no trouble peeing afterwards. I made sure and drank lots of water afterwards and everything was fine. The waiting was the hardest part. It will go well, good Luck!!



          • #6
            I have only had one cysto w/ hydro and was really, really scared in the weeks leading up to it. I was mainly afraid of the anesthesia and never waking up. lmao I can laugh now, but it really had me anxious.

            Now that I have been through it I can say that without a doubt if I needed to do it again I would. No question. The first few pees after were no fun, but I lived through them. My doc gave me pain meds for a few days and that helped.

            Mine really wasn't all that bad. I had a great OR team, my mom sat with me during the wait to go in, and I prayed my hiney off and had asked lots of people to pray for me.

            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


            • #7
              Well I just had a cysto/hydro on Jan 2nd. It was much better than I had expected. I mean I expected to leave with a urine bag thats how worked up I got myself.... Kinda crazy when you let your mind wander. But in all reality, it was fine! I woke up ok, wasnt too sore, peeing wasnt fun first few times, but it subsided afterward. About 5 days later I did have a symptom I had never had which was at the very end of urine stream the exscusiating(sp) pain that almost wants to make me cry. I called my URO and they said it sounded like I had an infection and put me on Levaquin for 5 more days. I still have the same feeling and the medicine is gone. I actually have a follow up appt today so will see how it goes. I was given plent of pain meds and antibiotics after the fact that even if it did hurt or I was sore I had meds to help... It really wasnt too bad and I would do it again. Hope that helps and HEY!!! DEEP BREATH!!! It will be ok...... good luck and let us know how it goes....
              Some day I'll get all of htis into check and learn how to live life with IC. Until then, learn, ask, search and pray. Take care, Coleen


              • #8
                I had a cysto/hydro, bladder instill (not DMSO), urethral dilation, and bladder biopsy in June 2003.

                I was very nervous, too. When I was in pre-op, the nurses gave me a sedative in my IV and that calmed me down before the procedure.

                Beforehand, I talked to my uro about how I was afraid to wake up in pain and afraid of the first couple of times peeing. She suggested that they put some pain meds in me through my IV at the end of the procedure, so I wouldn't feel much it was over. It did help very much.

                I had several bladder biopsies taken, so I did have some bleeding afterwards. It kinda freaked me out because it was more than I expected, but it was normal. It stopped after a day or so.

                Overall, the procedure wasn't as bad as I thought it would be. I'm glad I had the procedure done b/c it helped confirm my IC diagnosis.

                I didn't have any benefits from the procedure, as far as symptom relief goes, so I won't be having a hydro again, unless uro says I need one.

                Good luck! Try not to worry too much. Do things to distract yourself. Talking to your uro about your fears can help as well.

                Take care,
                Nicole blink


                • #9
                  I had the hydro about 3 years ago as a diagnostic, and I had a more difficult time than the others described. This is not to scare you, but to share my post op treatments in case you too are like me. Some are helped by the hydro, ao I think it is worth trying.
                  I experienced severe post-op pain and had blood in my urine for 2 days after. I was very uncomfortable even after 3 weeks. Pyridium helped somewhat, and I (on my own) temporarily increased my Elmiron dose to 400mg/day. I continued to experience more pain than prior to the surgery, and finally weekly DMSO treatments (about 10) brought it under control. (The Dr said that I have 'classic' IC)


                  • #10
                    hi I guess it would be plain silly to tell you not to be nervous...we all are before surgery. My experience with my hydro was that initially I had alot of terrible stabbing pain, but the nurses in recovery got me comfortable before I went home. I had the catheter in for a few days post op, which was a pain in the neck...(well, not exactly the neck..hehehe}But after just a few days, I was find. If I could tell you the one thing about IC that is the most useful in dealing with pain... HEATING PAD!!!!! I use mine all the time, and find it very soothing. So best of luck to you, and please let us know how you are doing when you get home from the hospital. grouphug hi Sheri
                    Wishing you the best, today, tomorrow, and always! Sheri G


                    • #11
                      I totally agree with Sheri, your best friend is the heating pad, I have two of them and God bless them both. Hope everything goes well and let us know how you are doing, take care and hugs Iris. hi grouphug
                      Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


                      • #12
                        Colleen, I also had the severe pain at the end of my urine stream. That started after the hydro. (Sept.) and lasted about a month and a half. I did not have an infection. I was also bothered by the fact that it didn't happen until after my Hyrdo. Now, I have pain every day. I guess my IC pregressed to this point pretty quick. (within a few months) (although, I did have on and off symptoms for years) Dana

                        "Don't quit when the tide is lowest, For it's just about to turn; Don't quit over doubts and questions, For there's something you may learn."