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Urologist told me Interstim or Bladder Removal...I have questions please...

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  • #31
    Hi, Meg, yeah I'm scared too. My first uro told me to "live with it" four years ago and that's when I got that book you talk about and read it from cover to cover. Went the "natural" route and spent thousands (or at least one thousand) dollars on a bunch of "natural" therapies that didn't do anything for me but drain my pocketbook.

    Yeah, they were non-invasive...but didn't work. Also, I'm not showing any signs of having pelvic floor dysfunction - just a very inflammed, horrible bladder that is one of the worst my urologist has ever seen in his career - so not sure that will help either, the physical therapy. I am hoping the TENS unit will help and interfere with pain signals.

    You know it's funny - everyone here reacts in horror when I talk about bladder removal. I am on an ostomy support group where there are a bunch of IC'ers who decided to get their bladders removed to have their lives back - and they are really singing the praises of having bladder removal done. Not one of them would go back to living with IC - they say having the bladder removed gave them their lives back. I am encouraged by that.

    I'm 43.....

    Only many times a day/night do you void, are you able to work or have a regular life? If not, maybe Interstim would be worth trying....

    Blessings, Lori


    • #32
      Happy Saturday, Lori,

      Man, it does sound like you have tried everything. I have not tried all the natural remedies myself, I do some self help stuff and meditate a lot, do distraction stuff, visualization techniques, etc. I am not afraid of having my bladder removed; indeed, the thought of having a bag does not bother me in the least. I am used to the gross stuff of diapers and pee and all the rest as I also have terrible incontinence. What I am worried about is that the pain does not always go away when the bladder is removed. I even heard of someone who then had the symptoms move to her liver once the bladder was removed. I don't have the specifics on that case, I just recently read it on one of the message boards I somewhere. I just have my own beliefs that this disease is much broader than the bladder and the bladder is the end organ where the symptoms appear, so in my mind, removing the bladder is only a temporary fix. I would love to not have the urgency and pressure stuff so removing the bladder would take care of that, huh?!!! There is no easy answer to any of this. I might have to do the same thing someday. I am not going to do any implants at this time as I don't know enough about it yet but I am gonna keep on reading. This house is full of IC literarture, boxes and boxes of the stuff!! I am on disability but one of my policies terminated me one year ago and I am still fighting to get that back. What a drag. I still have my Social Security Disabilty and state disability though so I am more fortunate than many, I guess. I void many times during the day and night but it varies and sometimes it is not too bad. I actually handle all of this better than I used to when I was younger. Still, the thought of living like this the rest of my life is overwhelming so I have to plot my course, I guess, and educate myself as much as possible. Hey Lori, do you have pictures of your bladder? I have three, from different hydrodistentions through the years. I had one uro say it was "mild" while my other docs all say it is a very "severe" case of IC. I would like to compare my bladder pics to others who have this disease in a very bad way. Do you know of anyone who could scan their bladder photos to share? LOL, what a weird request, huh? Or, I could send mine and someone could give me an opinion? I am getting pretty desperate here. Thanks again, Lori, for writing back as you still the only person I have found who is as medicine sensitive as I am. Have a good day!!! :-)


      • #33

        LOL..and I am NOT recommending this but I use my TENS to literally "divert" my pain to a new area. I crank it up and have it on somewhere else on my body all together until it "hurts" and then at least I feel a DIFFERENT pain for that time frame. Heck when I get a severe 3-day hormone migraine...a small sick part of me is "happy" because another pain is trying to compete/distract from my normal severe bladder pain. NOT the prescribed use of a TENS unit but thought I'd share my own use of it on the rare occasions I break it out. Other than that it does absolutely NOTHING for my bladder related pain. That is why it is hard to go to pain support groups that are primarily skeletal/muscle pain as that type of pain is often able to get relief via various stimulations...heat, cold, massage, TENS, movement, therapy, etc. Visceral pain is so much different and well you can't "reach" it. I have found very strange odd things to try and do to get some relief that if people looked in my window and saw what I was doing would probably have me committed. In the end...nothing does it really. Sucks to have this 24/7 pain for sure!


        • #34
          Pain, Hi, wow, I was thinking of getting a TENS but it really doesn't help your bladder pain? Hey, you are not so different than I am. 4 years ago when I had a hysterectomy, I was thrilled to have the pain of that surgery to take my mind of my bladder pain. I almost laughed at how easy that pain was compared to bladder spasms and pain. I didn't even take anything except for Advil to deal with the surgery pain. A couple months ago I had a huge boil (I know, I am really falling apart) and it was so gross and very painful but again, I welcomed it as it was so much easier to deal with than this crummy bladder pain. It sort of put things into perspective for me. It made me realize that IC is simply one of the most painful things one can have. I wish people could be more undestanding of us. I know some are but dang, this is such a complicated condition. Thanks for your input, Meg


          • #35
            Oh yeah

            Yeah..I got several boils all at once that got HUGE. Turns out I had MRSA infection which of course can be deadly if it gets in your bloodstream. The lingering effects may be HS - another very rare disease but NONE OF THAT PAIN compares to the 24/7 bladder pain. There are days I want to take a hammer to my toe I swear...just for a change of pain signals. I DO have a broken little toe that dislocates when I re-stub it, hurts like hell but I celebrate the mini diversion.

            I had the lap exploratory surgery and "loved" the pain from that too for a few days BUT not the urethra pain. Even though I requested and they used the smallest catheter available (small child)..I still ended up having severe bleeding from my BLADDER after that short surgery due to the catheter. My urethra is so shot that it is virtually unable to be cath'd. Which of course prevents the invasive so many docs found out. It is literally "shredded" insides. bleeds often and is solid hard scar tissue due to a "lovely" surgery I had on my bladder trigone and urethra back in the 70's. They have to use a small child catheter on me and often times it takes 2 people and a lot of drugs to even attempt it. Only agree to that now when a clean catch urine sample is absolutely necessary or when I am knocked out. But it is so damaged that even then...I suffer badly from it. To be honest, the catheter situation is what is stopping me from having a hysterectomy to remove the NINE LARGE fibroids I have, the as they called them "worthless dried up ovaries that look diseased" and deal with the endo that has likely built up again. I hate when folks refer to this pain as pelvic pain. Again...does not compare at all. I have the huge fibroids, endo, etc. and all of the pain from that doesn't compare to the unrelenting bladder pain. It is like no other.


            • #36
              Re: Urologist told me Interstim or Bladder Removal...I have questions please...

              I don't know if this is helpful or not, but I have had my interstim in for 6 years and it is still working. The doctor tested the battery and told me it has to be replaced by October of this year or it will go dead. It has helped me a lot, but the pain at the implant site is unbearable and I am considering having it removed instead of replaced. I understand removing the leads is the tricky part, if they break and a piece gets left in it can cause serious health consequences because the lead is made of tined lead and if broken off in your body it is really a bad thing. Why don't they tell you this when they put the thing in? I know I will need to take medication, Vesicare, or whatever is on the market now, but I'm willing to do that to be free of the pain at the implant site. Good luck to you.


              • #37
                Re: Urologist told me Interstim or Bladder Removal...I have questions please...

                If I am doing well on pain meds, does it make sense to take a chance on Interstim?


                • #38
                  Re: Urologist told me Interstim or Bladder Removal...I have questions please...

                  Originally posted by acheter View Post
                  If I am doing well on pain meds, does it make sense to take a chance on Interstim?
                  The interstim is not usually considered until all other treatment options have been tried and failed. There's a link in my signature below to the American Urology Association Guidelines for Treatment --- I suggest you have a look at their recommendations to see if there may be some treatment options listed there that you haven't tried.

                  Sending healing thoughts,
                  Stay safe

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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.

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