Announcement

Collapse
No announcement yet.

Uracyst

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    Uracyst

    Six treatments done and now away to start getting them only monthly, Uracyst has worked wonders for the urgency I was having which really was my only problem, it was quite sevre though, I had urgency everytime after using the bathroom and randomly throughout the day, especially when stressed which meant I couldn't work... However I have a new problem, since starting the instills I've had a horrible burning pain in my urethra, especially when urinating, it hurts even more than after a rigid cysto I had! My conclusion is that the nurse doing the instill has damaged my urethra, two different nurses were doing the instills, one was amazing and got it over and done with in seconds, the other placed the instill in my vagina twice and took at least five attempts one time to actually find my urethra... saying it would be easier if it was tattooed on... She said my urethra was feeling really tight and at the last instillation there was blood on the cathetar and I was bleeding after... I'm pretty sure my urethra is inflamed due to the nurse doing quite a bad job of placing the instil, I'd hope that a urology nurse would actually know where the urethra is, rather than taking five attempts to actually get the cath into it I don't think my urethra has had time to heal as I've been getting these treatments weekly... Has anyone else had the same problem? How long did it take to heal?
    Current Treatments - I've just started all of these, hoping for some relief soon
    Cystistat
    Cystoprotek (2x2 daily)
    Marshmallow Root (2x3 daily)
    Amitriptyline 25mg (once daily)
    Atarax 25mg (only daily)
    IC diet (only eating from bladder friendly column till I get some relief)
    Yoga
    Meditation

    Symptoms
    Painful urination
    Bladder pain


    This is my boyfriend and I, he is my rock through all of this!
    Tags: cathetar, instillations, uracyst
  • #2
    Gosh I am so sorry to hear about your urethra pain! Sorry in advance that I can't offer you a solution. I'm dealing with something similar. I have had IC for 9 months now, and I am currently experience a new horrible sensation of burning pain in my urethra, since self-catheterizing on Tuesday. It seems to be getting worse every day and not better. Its like my urination is keeping the area painful and sore instead of letting it heal. :-( I am on here today looking for external creams or something that I could put on there. I just wanted to let you know I think you could have a point, and that the weekly instills could really have irritated you, since just one instill seems to have really upset my whole area down there (not my first instill either, but this one seems have done damage!)
    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

    Comment

    • #3
      Hi Rachel- same exact thing happened to me.uracyst Instills had been slowly helping then i had a different nurse who couldnt find my urethra for 20mins & my urethra has been burning ever since. Ive had another instill since which still hurt but not as much & my urethra took about a week to feel better. Im currently on holiday in mexico & drinking gallons of water & relaxing seems to have helped. Take care im sure the inflamation will go down!

      Comment

      • #4
        Thank you very much for the responses! The burning hasn't gone away yet But I suppose after my urethra bleeding during the instill and the nurse taking five attempts at inserting the cathetar I'm not really suprised that it still hasn't healed, it's been two weeks since my last instill.
        Dani: I don't think a cream will help due to the pain being internal, the only thing I think works is staying hydrated. If I go to the bathroom after not urinating for 10+ hours it is agony! Just make sure you drink a lot of water, keep the urine dilute and it hurts a lot less
        Current Treatments - I've just started all of these, hoping for some relief soon
        Cystistat
        Cystoprotek (2x2 daily)
        Marshmallow Root (2x3 daily)
        Amitriptyline 25mg (once daily)
        Atarax 25mg (only daily)
        IC diet (only eating from bladder friendly column till I get some relief)
        Yoga
        Meditation

        Symptoms
        Painful urination
        Bladder pain


        This is my boyfriend and I, he is my rock through all of this!

        Comment

        • #5
          UTI vs IC?
          You've been checked for infection, right? One of the ways I know the difference between a UTI and my usual IC is that I have urethral burning with a UTI.

          Catheter issues:
          You might also ask for a non-latex catheter. Even though I'd never had trouble with latex gloves or anything before, I got a horrid burn from latex catheters. Changing to non-latex improved things a lot. The other thing that might make a difference is changing the catheter size - some patients are better off with a very thin catheter (like size 8 French). But I'm better off with a size 14 french because it moves around less. I also discovered that my urologist had been using male catheters with a coudé tip and that can be irritating to a sensitive urethra. (Judging from that and the large number of fishing & hunting magazines in the waiting room - he didn't have many female patients!) Getting catheters without that tip was also helpful.

          Hope you find relief soon,
          Kadi

          -------------------------------------------------------------
          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!

          Comment

          Previous template Next
          Working...
          X