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Cysto/Hydro/Capsaicin Instill two weeks ago

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  • Cysto/Hydro/Capsaicin Instill two weeks ago

    Hey all,

    I just wanted to share my experience with my recent cystoscopy/hydrodistention/capsaicin instillation. I mainly did it for the therapeutic results since I had a cystoscopy in March (in Spain) and was told everything looked normal.

    They give you general anesethesia for the procedure because it is very painful, so you have to do all the typical pre-surgery stuff- no eating or drinking after midnight, dress in a gown, cap and booties, etc. We had to get up at 5:45am to be at the surgery center at 6:45 for my 8am surgery time. Crazy. One note of caution- I was supposed to pick the capsaicin up myself the day before from a special kind of pharmacy (compounding). However, I didn't get the message from my doctor's staff until the afternoon, and when I showed up at the pharmacy at 6, they had just closed! Luckily, my mom was able to buzz over in the morning to pick it up.

    The procedure itself was fine, and my bladder looks totally normal and has normal capacity according to my urologist. When I 'came to', my whole genital area was on fire from the capsaicin that must have made contact with my skin. It was horrible. I was given ice packs to put down there. When I was stable enough to walk (with help) to the toilet, I was given water and a towel to wash myself with, to rinse off any remaining capsaicin. I was unable to pee. They kept me there for awhile longer, I have no idea how long because time feels so strange when you're drugged! I tried to pee again and was unable, but they sent me home anyway.

    At home I continued to ice myself cuz I was still burning, and I just lay in bed. After a couple hours, the burning stopped. I still couldn't pee though, so I had to go back to the surgery center to get a foley catheter put in (the kind that stays in, with a leg bag to drain) which I had to keep on the rest of the day and night. I went back in the morning to have it taken out. I was absolutely terrified before they were going to put the foley catheter in because it looked so much bigger than the intermittent catheters used for instillations that cause me so much pain, but luckily, all the pain meds dulled my urethra and it really didn't hurt.

    When the foley catheter was out, I could pee easily, actually more easily than I had in months. My bladder was painful and seemed to contract at the end of urinating, but starting the flow was easy and didn't hurt, and that was new for me. This lasted a few days. I started feeling better and so I stopped taking the pain meds. A couple days later, things started getting really painful, and for the past week, I've been in terrible shape, with a flare that rivals the one I had 8 months ago when this all started. :-( However, I did eat a questionable food during the first week (raspberry tart with prelief, first major diet break in months!) and I went to the gym at the end of the first week. So maybe that's caused this awful flare?

    I don't really know what is going on now! You're supposed to feel worse for awhile after a hydro, and especially after capsaicin, but its weird to me that I felt better and then got worse again! You're supposed to start feeling better at the two week mark. I will keep updating as things change...and hopefully get wayyyy better!!
    IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
    Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
    Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

    Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
    Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
    Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
    Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH
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