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  • cysto / hydro Friday - need encouragement

    Hi everyone,

    Well, the date for my cysto / hydro is closing in - Friday, June 29. I'm still incredibly scared. I've read horror stories on this site about it making people worse for MONTHS, which have sent my mind into overdrive. So, part of me wants to back out because I've been feeling better recently.

    However, when I remember how I felt a month ago (in tears) and over the past 5+ years off and on, I want ANSWERS! I want a diagnosis - or at least I want to get closer to one.

    Is the procedure really going to be that bad? Will I be back to my normal self in 3 or 4 days? Does anyone have any positive stories to share?

    This whole thing is emotionally overwhelming to be completely honest.

    .

  • #2
    When I had mine done it was not all that awful. Peeing the first few times did hurt - but wasn't unbearable. Yes, it felt like peeing broken glass, but I was OK.

    I had pain meds for 3 days and those helped. After that I pretty much felt like I was in a bad flare - which I was used to from before - and then in a week or maybe two I was back to how I'd felt before I had the cysto w/ hydro. Now, I developed a UTI - so that didn't help how I felt at all either.

    It is a procedure I would do again if I had to, for sure. There are horror stories here - but I think the OK outcomes far outnumber those.
    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


    • #3
      I guess my are success stories. Yes, for about two weeks I feel pretty bad, but then slowly it gets better and I get such relief. I just realized I haven't had to go to the bathroom for 5 hours. Woo hoo. I get about 5 months of relief. I try to have two a year. Good luck.

      Comment


      • #4
        I had my first cysto/hydro in April 2007, it went really well. It didn't hurt at all going pee but I was sore for about 2 weeks after the procedure, my Dr did tell me I would get worse before I got better, I hung in there and I feel great now. I still have to watch everything I eat, if I don't I will go into a flare. I am so glad I did the hydro, it was worth it all. I almost back out at the last minute too, but I went through with it and I am so glad I did. Just remember for about 2-3 weeks after the procedure you won't feel so great but it WILL get better, just give it time. Your bladder has to "heal" from the stretching. Take care and just do what your gut tells you.
        Sue
        Dx with IC April 30 2007
        Dx with Endo Sept 2007
        Supra Cervical Hysterectomy April 9 2009

        Comment


        • #5
          I was sore for about 2 weeks but I was able to go back to work 2 days after my procedure and I am a mail carrier, I drive a mail route but I still do alot of lifting,carrying, standing, walking and I was fine to do that I just took things very carefully. And rested when I was at home.

          Sue
          Dx with IC April 30 2007
          Dx with Endo Sept 2007
          Supra Cervical Hysterectomy April 9 2009

          Comment


          • #6
            I had my one and only cysto/hydro three years ago now. I didn't have much of a problem at all The surgery itself was a breeze, and I was given excellent pain control in the recovery room. I was also given a prescription for pain medicine to take at home.

            The first few urinations were bloody and a bit painful -- there was some soreness and burning. But, with each subsequent urination, the pain lessened. I also felt crampy and achy in the bladder for the first 24 hours. I was pretty tired for a day or two as well, but within 48 hours I was able to be up and around, doing my normal thing

            Not a problem for me..... and I have severe IC, so it just goes to show that everyone is different when it comes to recovery.
            ****
            Jen

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. 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.

            Comment


            • #7
              Oh hon, you will be fine I promise. I wont lie to you I will never have one done again as it made me alot worse, but unless you try it you will never know!

              Some ladies get a lot of relief from hydro's and they can help the doctor find alot out about your bladder!! some ladies have them time and time again!

              Lets just hope you get a positive response from it though,

              Are they putting you to sleep?
              x
              Started with symptoms 2004 after a severe infection.
              Was diagnosed with IC Feb 2006 after cystoscopy.
              Diagnosed with vulvodyina and PN in july 2006.
              Dignosed with ME and IBS Oct 2006.
              Currently taking Amytriptaline 50mg, regular pain killers and birth control!
              Also doing IC diet and regular use of heat packs.
              Still struggling with IC and controling my symptoms so looking for some help

              also recently had abnormal pap, CIN III and just had LEEP done 2007

              Comment


              • #8
                It's been almost two weeks since my last hydro. I still have very slight irritation, but it's better every day --- and definitely better than before the procedure.

                Hang in there. I have read that something like 50% of ICers see improvement from hydrodistention --- I hope you'll be one of them.

                Sending encouraging 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


                • #9
                  cysto / hydro

                  Yes, they'll be putting me to sleep. I'm the nervous type, so maybe I should ask them to give me something to "relax" me beforehand.

                  What kind of pain meds have been helpful to people after the procedure?

                  Thank you. Thank you very much.

                  Comment


                  • #10
                    one more question

                    Would it be better to do an in office cysto first before going through the one with hydro? I've read though that doctors can't always get an accurate result from doing just this.

                    Comment


                    • #11
                      Just wanted to let you know that I just had my first hydro/cysto on the 19th of June. I am doing great. My urgency is not as bad as before and the pain is not as bad as I thought it was going to be. I was diagnosed with IC which we were already pretty sure about but it is nice to know for sure. I spent a couple days on the couch but have been back in the saddle since then. Good luck and Gold Bless You, I hope you have results like mine.

                      Rhonda

                      Comment


                      • #12
                        I was diagnosed with just the cysto/hydro under anesthesia -- I've never had an in-office cystoscopy. You are right; sometimes IC "hides" from the in-office cysto and only becomes visible upon distention of the bladder.

                        So, since office cystos can be painful and probably won't tell you much, my opinion is that you should just have the full monty now since you are scheduled... they will see everything they would see on an office cysto and more with the distention, so why put yourself through extra pain at this point?

                        BUT, that is just how I, personally, would be thinking -- you may feel differently.

                        And, I was super nervous before my cysto/hydro too (crushing my husband's hand, wailing that he should remember that I loved him if I didn't wake up, and generally scaring other patients in pre-op ). They were very good and did give me something to relax me, which worked extremely well.
                        ****
                        Jen

                        *Diagnosed with severe IC in 2004
                        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                        **I am not a medical authority nor do I offer definitive medical advice. 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.

                        Comment


                        • #13
                          I agree with Jen. I was super nervous about my hydro. I had also read all of the things here and how some people where made worse. I specifically asked my uro if any of his patients had been paid worse by it, he said now and I believed him. I'm happy I did it because w/o the biopsy I wouldn't have gotten the diagnois. I was uncomfortable afterwards but it was nothing that the pain meds didn't help and I didn't get worse in the long run or better. After I recovered from my hydro I had the same symptoms I did before hand. Didn't help, didn't hurt but got my diagnois. Good luck!
                          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


                          • #14
                            So helpful

                            Everyone on this site has been extremely helpful and supportive. I'm feeling a little better about it, but I'm certain I'll be nervous no matter what.

                            I've heard the procedure takes only 15 or 20 minutes. So I won't be asleep for very long. Has anyone been afraid of the general anaesthesia? I've never had general anaesthesia for anything. (I have that fear, too, about not waking up.) Has anyone just had regional anaesthesia - like an epidural I would imagine?

                            Thanks for all the support!

                            Comment


                            • #15
                              I have had about 10 of them and I am usually alright after about 2-3 days. i work full time and I schedule them on Thursdays this way I have off this day along with Friday and the weekend off. I am at work again on Monday. They usually give you pain medication - Imight need it for maybe 2 days then I don't need it any more. They are more of a success for me, I only had one that I had problems with and that was one that I had in October where I was bleeding for over 2 weeks, found out I had bloodclots/plus an infection. Finally bleeding stopped. Once everything cleared up, I was fine. They (the hydros usually help me for 6-8 months then I have to call my doctors and schedule another one.

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