Announcement

Collapse
No announcement yet.

Pain after bladder instill

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • jenn948
    replied
    I know its different for each person, but I went through Instill treatments 1 a week for 6 weeks, After each one i felt like i had a severe UTI but i didnt. Its was a very achy burning feeling all over. I hope you feel better soon, My doctor gave me tramadol to help with the pain and was instructed to take Azo as needed.

    Leave a comment:


  • pdxmom
    replied
    Please don't fear instillations. For many people they're a total godsend and the lidocaine brings immediate relief. In my experience, you'll have the best experience if you say you want a non-latex catheter--preferably a LoFric catheter. AND that you want them to use lidocaine jelly to numb your urethra. Some urologists' offices use absolutely enormous latex catheters and no numbing jelly unless you say something. That can cause urethral burning, which feels similar enough to bladder burning to be confusing. Good luck!

    Leave a comment:


  • karm422
    replied
    Installations

    Also, my installations killed my urethra too and my Urologist didn't believe me either, saying it was impossible to be in pain from installations. Those were the DMSO installations. I was doubled over in pain crying and bleeding and the doctor as completely non sympathetic. I immediately changed Urologists (AGAIN) and the new one started me on elmiron and lidocaine installations. My urethra is still not happy. I complained about it so much that he did a scan of my pelvic region and nothing showed up in my urethra, yet it hurts all the time making sex impossible and life miserable. I wish Urologists could have IC for at least a week to understand the pain and be more empathetic.

    Leave a comment:


  • karm422
    replied
    Correction...

    Aloe Vera, not alie Vera

    Leave a comment:


  • karm422
    replied
    Installations and hydrodistentions

    I feel your pain on the installations. I have had IC for 22 years and am having THE worst flare up ever. I am having a series of installations (3 so far) and they have made me worse. I don't know whether to continue with the installations and hope they start helping or do another hydro distention? Over 22 years I have had 4 distentions. The first 3 worked great and the last one not at all. I also struggle with meds and no Urologist believes me when I say ALL anti depressants burn and that few frequency meds work. The only 2 I have had some success with are toviaz, gelnique but all of them cause constipation which then flares up my IBS. So, it is a vicious and depressing cycle. Now the choices being offered to me are:
    1). Continue installations 3x a week for 2 more weeks
    2). Have another hydrodistention
    3). Have Botox injections
    I don't even know how to proceed but am worn out from peeing every 30 minutes. I seriously have tried every drug imaginable with very few helping very much. Currently I am on toviaz, soma, cystoprotek, desert harvest alie vera and hyophen. I have tried elavil, cymbalta, lyrica, Prozac, flomax, vesicare, ditropan, uripas, all tricyclics and they all burned and made me worse. Which, to add insult to injury, every Urologist tells me is impossible. Meanwhile, I have spent a FORTUNE on meds and have a medicine cabinet full of ones that don't work. The worst part is I would love an anti-depressant! I am on deplin which helps some, a prescription folate for depression, also ridiculously expensive. At any rate, I don't know how to proceed at this point? I did have some success with internal laser treatments with my Physical Therapist but right now I really need my symptoms to calm down because I just can't function on no sleep and so much pain. It has affected my cares, my relationships and my emotional well being. I seriously don't know what to do next??

    Leave a comment:


  • patagonia
    replied
    Originally posted by SuziQ64 View Post
    I can really relate to the pain you experienced with the catheter. I actually screamed out in pain on insertion and an expletive escaped my mouth. This is not something I would normally do, but the pain in my urethra was truly excruciating. I wasn't expecting this. Based on the pain the uro (IC specialist) decided that any further installations would only cause further trauma to my urethra and ruled out installations. Instead, he gave me a prescription for Elmiron and said 'see you in 6 months'. Ugh!

    I experienced bleeding and pain for 24 hours after the cysto.. It did calm down after 48 hours. I wish I had never gone through with it. I think it caused a lot of trauma.

    I hope all calms down for you soon Patagonia!
    Thanks for sharing this because honestly, I was feeling really confused. My doctor has been a urogynecologist for over a decade but insisted she had never seen anyone in pain from the procedure before. It depressed me and made me feel a little nuts. Then I found this thread, and obviously I am not the only one who has some pain from this.

    Most of my symptoms are urethral from what I can tell so it makes sense to me that it would hurt. I have pain when I wipe with toilet paper even, and once poked my urethra with my finger and some pus came out. However, tests showed no infection, which confused and confuses me still.

    I'm not up for feeling this way! I have enough on my plate and just want them to figure it out already.

    Thanks for your kind words. Seriously.

    Leave a comment:


  • nekura
    replied
    I'd just like to add to please never fill bullied into a medical procedure like this... research first.. take in your personal feelings... then decide. Don't decide the moment the doctor suggests something (unless its what you've been wanting all along).

    Leave a comment:


  • SuziQ64
    replied
    Urethral pain with instillation

    I can really relate to the pain you experienced with the catheter. I actually screamed out in pain on insertion and an expletive escaped my mouth. This is not something I would normally do, but the pain in my urethra was truly excruciating. I wasn't expecting this. Based on the pain the uro (IC specialist) decided that any further installations would only cause further trauma to my urethra and ruled out installations. Instead, he gave me a prescription for Elmiron and said 'see you in 6 months'. Ugh!

    I experienced bleeding and pain for 24 hours after the cysto.. It did calm down after 48 hours. I wish I had never gone through with it. I think it caused a lot of trauma.

    I hope all calms down for you soon Patagonia!

    Leave a comment:


  • patagonia
    replied
    I think this is what I just had too, although I haven't been diagnosed with IC yet

    I think that this is the same reaction that I have had (really am having right now, on the tail end of) to a lidocaine installation in the doctor's office. That's the only one I've ever had.

    This doctor diagnosed me with neuropathic vaginal pain, but I was previously diagnosed with IC and then "undiagnosed."

    All I know is when she put the lidocaine in my urethra, it felt like I was knifed open. It was AWFUL. I kept it in about two hours, and it burned all the while. Drank a whole bottle of water. Went pee, and then it felt like I peed razor blades, had full urethral spasms all night, and now it's about 36 hours later and it's just getting better.

    The doctor told me no one had this reaction to the installations.

    I think she might have been wrong though! Whoa, it hurt. No idea if it will help yet.

    I think I really might have IC after all... still trying to figure out what is wrong with me though. Either way, I feel for your pain greatly.

    Leave a comment:


  • nekura
    replied
    Thankfully my uro just outright said that installations wouldn't help my symptoms (just terrible urgency to the point that it feels like my bladder is tearing.) She's a specialist in IC, so I'm taking her word on it. I wasn't going to try instills anyway.. I was just wondering about home lidocaine instillations.

    Leave a comment:


  • ICMommyof4
    replied
    I have done both the instills and the cystoscopy/hydrodistention. Unfortunately neither worked for me. After 12 instills I just couldn't do it anymore, I hurt soooo bad afterwards sometimes up to 3 days after. Everyone is different though and what may not work for one will help tremendously for another. I suggest trying it, hopefully it will work!!! : )

    Leave a comment:


  • lisav
    replied
    I feel your pain, I hope you get better, look into the hormones levels in your BC , I was on birth control for a while and I was unable to tolerate it, for me it made my IC worse, good luck to u...

    Leave a comment:


  • lisav
    replied
    good idea on the baking soda I will definitly try it, thanks and I take a xanax to to calm my nerves

    Leave a comment:


  • lisav
    replied
    yes Your case sounds like mine, I was diagnosed back in 2005, I was started on On Elmiron twice a day I was fine but then I started getting worse then my uro recommened the instillations once a week and I do notice that the day I do it I am a bit bothered and the next day to, so I find taking my xanax before instillations and then the next day to does help, and being extra good with my diet, and then two days in I feel great again, I also do yoga once a week only and I find that it is helping calming my nerves and mind. but never do active activity and instillations the same day its is too irritating on the bladder. I hope this helps..

    Leave a comment:


  • nottoc4
    replied
    I've had many instills and here is what worked for me to reduce the pain.
    Take a Pyridium or Azo before you go to the Dr. office for the instill.
    Drink 1 teaspoon of baking soda in 8 ounces of water as soon as you can after the instill. The baking soda will drastically cut down on any burning
    or pain you may have. My instills included two capsules of Elmiron in them and I had to hold it in for 2 hours before peeing it out. That way the Elmiron had a good chance to start healing the bladder. Instills jump started my healing process and was worth a little discomfort overall.

    Leave a comment:

Working...
X