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  • #91
    Re: LiRIS

    Lou Lou girl,

    You are very right. I actually described my pain to the pain doctor. I even questioned her about it because my pain is like yours, it is IN my bladder. I can actually pin point where my bladder pain is. It is in the base of my bladder and at the neck of the bladder. My cystoscopy actually showed the inflammation when I was diagnosed. I did not even have a hydro as my inflammation was readily seen on cystoscopy.

    I have been researching the spinal cord stimulator to see if anyone else with IC has even done this for "actual bladder pain" like you and I seem to have. I do not have pelvic floor pain at all. I know when I saw a different doctor who deals with pelvic pain in general, she tested me by pushing on the pelvic floor to see if it would bring the pain on that I get and I felt no pain. However, when she proceeded to press my bladder area, OUCH! I emailed a lady I know who is on the ICA board. I asked her if this stimulator has been used for IC pain in the bladder. She has not gotten back to me yet though. I would not proceed with this unless I obtain more information on it as it is invasive and involves the spinal cord.

    I agree with you completely though, I am not one to be pushed into procedures and tests, just to say I tried it, or because it is supposed to help pelvic pain. You are right, the area of involved inflammation means a lot in terms of what will or will not possibly help. I will definitely ask her when I see her again. I am leery because she told me she has not worked with any other IC patients before. She is very nice and willing to try and help me though. I am doing the research myself to try and see if any other IC patients have even used this device and for what reason( i.e., actual bladder pain or PFD pain) and what the outcomes were. I am also dealing with other issues now to which is complicating things. I have been having other pain now( likely due to my uterine fibroids). I may end up having to have surgery for this eventually and that alone is scaring the crap out of me in fear my IC will get even worse than it is. That idea scares me to death actually as I cannot imagine being in worse pain than I already am or for my IC to get worse. I will ask the pain doctor about how they determine whether this stimulator would help if the pain is actually coming from inside the bladder. I will let you know. I do not see her for another month, but I will keep you posted for sure..

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    • #92
      Re: LiRIS

      Originally posted by jen74 View Post
      Lou Lou girl,

      You are very right. I actually described my pain to the pain doctor. I even questioned her about it because my pain is like yours, it is IN my bladder. I can actually pin point where my bladder pain is. It is in the base of my bladder and at the neck of the bladder. My cystoscopy actually showed the inflammation when I was diagnosed. I did not even have a hydro as my inflammation was readily seen on cystoscopy.

      I have been researching the spinal cord stimulator to see if anyone else with IC has even done this for "actual bladder pain" like you and I seem to have. I do not have pelvic floor pain at all. I know when I saw a different doctor who deals with pelvic pain in general, she tested me by pushing on the pelvic floor to see if it would bring the pain on that I get and I felt no pain. However, when she proceeded to press my bladder area, OUCH! I emailed a lady I know who is on the ICA board. I asked her if this stimulator has been used for IC pain in the bladder. She has not gotten back to me yet though. I would not proceed with this unless I obtain more information on it as it is invasive and involves the spinal cord.

      I agree with you completely though, I am not one to be pushed into procedures and tests, just to say I tried it, or because it is supposed to help pelvic pain. You are right, the area of involved inflammation means a lot in terms of what will or will not possibly help. I will definitely ask her when I see her again. I am leery because she told me she has not worked with any other IC patients before. She is very nice and willing to try and help me though. I am doing the research myself to try and see if any other IC patients have even used this device and for what reason( i.e., actual bladder pain or PFD pain) and what the outcomes were. I am also dealing with other issues now to which is complicating things. I have been having other pain now( likely due to my uterine fibroids). I may end up having to have surgery for this eventually and that alone is scaring the crap out of me in fear my IC will get even worse than it is. That idea scares me to death actually as I cannot imagine being in worse pain than I already am or for my IC to get worse. I will ask the pain doctor about how they determine whether this stimulator would help if the pain is actually coming from inside the bladder. I will let you know. I do not see her for another month, but I will keep you posted for sure..
      Jen74, Thank you so much. I will be awaiting your news on what you find out about the stimulator. On your concern over pelvic/abdominal surgery, you are very very right to be concerned. I had a complete hysterectomy (ovaries and all) for what turned out to be stage 4 Endometriosis. A Gynecological Oncologist went in looking for cancer. I had been having "menstrual cramps" every single day even when I was not on my period. I had always had horrible pain with periods, but the pain started happening even when not menstruating. My sister had a very fast moving ovarian cancer at the age of 27 and I had another sister with breast cancer, so you can see why he told me I needed a hysterectomy ASAP. He found a horrific case of Endo instead. He said it was one of the worst cases he had ever personally worked. Anyway when I awakened in the recovery, I kept telling the nurse I was burning in the urethra/trigone of my bladder. I was in and out of consciousness, but each time I came to, I asked her to "check the catheter". I only wish that had been the problem. About the 4 th time I awakened, I started yelling, "I WANT TO SEE A UROLOGIST NOW", because by this time, the nurse was ignoring me. They sent in one of those learning to be gynos, resident, or whatever they call them. She said, "We did a lot of work around there and had to scrape endo off your bladder". She smiled, patted my arm and left. I was boiling mad that my cries for help were going unheeded. Before, I had only frequency and urgency and no burning at all. After that surgery, I now live in BURNING PAIN that has continued to this day. That was Sept. 5, 2012, the day that will live in infamy. I have been battling this pain since then. The surgery triggered IC on a whole new level. I was 19 when IC first began, triggered by a strictured urethra which would not allow my bladder to empty fully, which caused stagnate urine to stay in my bladder, which caused 2 years of chronic infection until the stricture was discovered and corrected with surgery. That was my first "trigger". This hysterectomy triggered it a second time with never ending burning pain. If you must have fibroids removed, I would have a urogyno do the surgery, as I understand there are steps that can be taken to minimize the impact the surgery may have on your IC. They "try" to treat your bladder more carefully. In my case, the endo had glued all my pelvic organs together in this big horrible ball of thick endo. The endo has engulfed my entire pelvis and abdomen and I doubt no matter what, my bladder could not have been more delicately because it had that gunck all over it and scraping it off was what had to be done. They also found that I had fibroids as well as andomyosis on top of everything else. Be sure that your urogyno understands surgery can trigger IC that is even worse. He may take the steps he needs to minimize this risk that they would not otherwise take on someone who does not have IC. Best wishes to you and you have my prayers. I have been praying for you since we first met after my trial with Liris device. Lou Lou girl

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