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

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  • #16
    Hi, Janet, my doctor told me it's impossible for the Tylenol to be affecting my bladder because it's processed by the liver and not the kidneys. You know, docs know everything and if we patients feel something they don't expect then we are either crazy or lying.

    I tried Neurontin, it made my bladder pain much, much worse, it was awful.

    If I can just get rid of the urgency/frequency/constant feeling of having to pee even ten seconds after I finish, I figure that will be enough that I can live with the rest of it.

    The only other option at this point (besides Interstim) is bladder removal. I am going today to my appointment to try a TENS unit - hoping it will work. But basically if that or PNS don't work, it's down to Interstim and bladder removal because I've tried all the drugs and all of them make my bladder pain worse because my bladder is hypersensitive to meds.

    Between those two choices - Interstim and bladder removal - I think Interstim is a bit less risky, more easily reversible, etc.

    Guys, I don't like these choices either. I do wish there was some medicine I could take, some easier way out, some DMSO that would work, etc. But I have tried them ALL and nothing works for me, all meds make my bladder pain WORSE.

    So here I am, left with these choices that I do not like. It doesn't matter how many horror stories I hear, either about bladder removal or Interstim, I am still left with only those two options after trying and failing everything else. I can not live with this disease, it is 24/7 for me with no relief. So just "living with it" is not an option either.

    Interstim and then bladder removal, in that order. If the Interstim does not work, bladder removal is next.

    Blessings, Lori


    • #17
      I hope you don't think you have to answer to me. You know your own body. I was just trying come up with some extra ideas for you. Surgery is a big step.
      The order you are planning to do these in makes sense. Did you see the thread about bladder removal? A user named Judith said she had her bladder removed and is willing to answer questions about it. If you do get to that point, I believe there a choices to make about how it is done.

      Good luck to you and please keep us posted,
      - janetm


      • #18
        Hi, Janet, thanks for replying - I have read Judith's story and many of her posts and she said she'd be happy to answer any questions I have. Mostly I am just hoping that Interstim or something will work so I won't have to go to bladder removal. I am just so tired of this IC stuff.

        Went for a TENS unit today. Got to the physical therapy, they said "wrong place, your doc should have sent you to the gynecological physical therapy as we only do muscle aches/back problems." So I have been waiting weeks to get seen for a TENS unit, and now must make an appointment at another place and wait weeks again.
        I was really hoping to try the TENS unit because I'm now in month 3 or 4 of this flare with no end in sight and I wanted some relief.

        Blessings, Lori


        • #19

          I hope this works out for you. Good luck Lori!!!!!!!!!!!!!!!!! I so hope this helps you as much as you need it to! Love and Blessings to You!

          Faith, Hope, and Love,

          I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          or find me on facebook
          Be the Miracle! & Pay it Forward!

          [email protected] please contact me...I am here to help!


          • #20
            Lori- I was at the end of my rope too when I had the interstim done and it gave me my life back. You know though you have to go to a doctor that really knows what he is doing, my DR a uro/gyn has done over 120 of them and has great success plus if it doesn't work then you take it out and are not physically worse. I was going to tell you a few things that worked for me because I did not respond to any DMSO or medication they gave me it made me worse, I was so desperate. But I decided to try Freeze-dried Aloe vera from Desert harvest and it cut my symptoms from 60 times a day to 30 or so, I know that that is not enough to have a life but it made my life stuck at home little less miserable, I also follow a very strict diet and only eat organic food because there is so much stuff it regular food, especially all the stuff they add before they kill the animals or harvest anything. I also am picky about my water oil and salt and I can tell you upon my life I know that it what made my urgency and my frequency better and that working together with Interstim on 90% of days I only pee about 12-17 times a day. That was great for me. I know that everyone is different and taht you are tired of having to be self-diciplined but I want to tell everyone who I can that what I do might help them. If you have any questions please IM me. I will be praying for you. I am so sorry.

            This I recall to mind, therefore I have hope. Through the Lord's mercies we are not consumed. Because His compassions fail not. They are new every morning; Great is Your faithfulness. "The Lord is my portion," says my soul, "Therefore I hope in Him!" Lamentations 3:21-24


            • #21
              Thank you so much Brooke!

              I am trying so hard not to ingest anything that irritates my bladder....using Prelief and TUMS just to de-acidify my urine as I drink lots of water....

              I just feel frustrated because all the docs I talk to about this, think I'm crazy or lying when I try to tell them that so many medicines (nearly all of them) make my bladder pain worse.

              I know that I'm not lying or crazy. I have never had an imaginary pain or illness in my life. When something is wrong, I feel it. I wish there were some scientific study to show doctors that, yes, IC patients sometimes are hypersensitive to medications and they can make the bladder pain worse.

              Well, I'm going to do the TENS unit, the percutaneous nerve stimulation therapy, and then if those don't work I will look at Interstim and then if that doesn't work I guess the next step is bladder removal. I keep trying to figure out how I can just live with this, and I can't figure out a way. I mean, if only I could get a good night's sleep, maybe I could cope with the pain/frequency/urgency during the day and still have something like a life. And I'm really not sure if the pain is pain/pain or if it's frequency/urgency pain - I know that doesn't make any sense, but it seems like I get relief when my bladder is completely empty but if there is even a few drops in, I get the pain again. So if the Interstim blocks that pain you get from a few drops filling the bladder....I should have good relief I think. Anyway I think it is worth trying. I know that it could go terribly wrong and I could end up in worse pain, but I just can't live like this any longer and I have to try something. I have to just cross my fingers and hope for the best. Oh I hope a better treatment, a cure, is coming soon for all of us.

              I am going to the urogyn on Monday, the 16th of August, for my initial consult. I guess he is the one that does these interstims. So I will see what he thinks then. Of course I want to try the TENS and percutaneous stuff first. The hypogastric block...sheesh from what I have been hearing/reading/been told it scares me worse than Interstim. They generally only use that on patients dying of cancer and there is a 2% chance each time I have it done (have to have it done every six months) that I will lose control over my bladder and bowels and be stuck in a diaper forever or that I will die on the table because they will hit an artery. So I am looking at that and thinking...hmmmm...think I would rather do the Interstim....

              There are a couple other things I want to check out. I want to ask (yet again) if I can get some stuff to instill in my bladder to numb it, to handle the symptoms that way. I want to ask about Botox again. I want to ask if I can be tested for Sjogrens (I do have dry eyes) to see if it's that, and then immunosupressive drugs would help in that case.

              It's just that I have been living with this for four years, and it's been getting worse and worse until it's a 24/7 thing. I am not as bad as you were, only about 30-40 times per day so maybe I should consider myself very lucky but even at this rate it's hard to live a good life, and my bladder feels uncomfortable most of the time between those voids too. Often I only get seconds or minutes of relief after each void, then the discomfort starts again. I just get tired of my bladder always wanting to be the center of attention.

              Thank you again for your post, I'm feeling sort of blue these days so I think my posts are probably a bit too terse or something, I always come across badly when I'm down.

              Blessings, Lori


              • #22
                Thank you so much Katrina! You are such a sweetie! You are surely one of the truest angels here on the IC Network.

                Blessings, Lori


                • #23
                  Interstim And Diet

                  Lori- I am also very hypersensitive to medications and for a long time I had no relief in my symptoms and I kept getting worse and I at the end of my rope. It is ok Lori, don't appoligize for being concerned. I wonder though if you have tried the organic food and you know tums and prelief don't help me. I wouldn't mind sending you my diet if you want, I just need your email, by following it it takes away the pain and most of the frequency and a lot of the urgency. But there is just so much added to regular food also have you tried the aloe vera it has no side effects and won't interfere with medications. I know you are tired of trying things but by doing these things you cannot get worse and it is not a permanent decision. Also with interstim what I like about it is that if a cure or something comes out I can take the implant out like it never happened. Please feel free to email me with any questions.

                  brooke ([email protected])
                  This I recall to mind, therefore I have hope. Through the Lord's mercies we are not consumed. Because His compassions fail not. They are new every morning; Great is Your faithfulness. "The Lord is my portion," says my soul, "Therefore I hope in Him!" Lamentations 3:21-24


                  • #24
                    Hi, sweetie, I'm willing to try anything....right now I am trying Algonot 5-1 which I think is supposed to have aloe vera in it....

                    Went to my pain management appointment today. I know the time and date were right on the mark because I took the info over the phone and wrote it down - 14 August 0730 - well it's a Saturday so the clinic is closed of course. They will probably say "oh no we didn't tell you that time..." I think they think I am a problem patient because I keep reporting adverse reactions (bladder pain) to meds and I think they think I am lying.

                    Blessings, Lori


                    • #25
                      has anyone tried the interstim that ONLY has frequency and urgency? and if so, has it helped? did it cause more pain? and more importantly - why is the surgery so hard to recover from?? Thanks!!


                      • #26
                        Lori, I am new to this group and am not exactly sure how I am supoosed to do this or if this message will even show up. I cannot find a message from you dated any later than August 17, 2004 and I am writing this message on August 27, 2004. I want you to know that I too, am super sensitive to any and all drugs and all the pain meds I have tried have made my bladder symptoms worse. The urgency/freqency and pain always get worse and I simply will not take that crap anymore. I too have been asked by my pain management specilist to try Interstim or a procedure called Spinal Cord Stimulation. I have only started my research and I think they are too risky but certainly better than having your bladder removed. I have had IC all my life but was not properly diagnosed until I was 35. I am 47 now. I am going to think very long and hard before I let anyone put those implants into me. I know of one lady in my other support group who has had Interstim and had very bad experiences with it. Did your doctor mention Spinal Cord Stimulation? That sounds horrible to me but I don't know what we are supposed to do if we can't take pain meds. Anyway, I hope you find some relief and I will be thinking positive thoughts for you and for all of us with this dreadful disease. Thanks, Meg


                        • #27
                          Hi, Meg, I'm sorry you have had the bad experience too of medications bothering your bladder. Have you had problems with doctors not believing you? Today was the first time I ever had a doctor (my new urogyn who seems very professional and nice) tell me that he's heard of this before and understands that some IC patients do have problems like this and it's not in our heads and we are not liars. (The other docs basically told me I was lying.)

                          I am currently in a semi-remission perhaps because of hydrodistention/cystoscopy I had a month ago (first I didn't get a remission because I got a UTI but now that the UTI is cleared up my bladder is feeling so much better, and is well enough that I can't do Interstim or anything because it's not bad enough to note improvement...).

                          So anyway we are doing nothing until my symptoms return. But he is very enthusiastic about this Interstim, says that he's had great results for his patients who were just like me including many who could not tolerate meds.

                          I too have heard horror stories and am afraid but I am slightly less afraid of Interstim than I am of bladder removal so I guess Interstim it is. I know that when I am flaring (and my flares last many months, not just weeks or days) life is just impossible. I go from 30-60 times per day and go all night long, spend all my life on the toilet when I'm symptomatic, and have pain as my bladder fills (even a few drops hurt bad). That's no way to live, especially when meds end up hurting instead of helping, and there is nothing I can do.

                          So...what is a person to do when faced with either bladder removal or Interstim? Interstim seems somewhat more reversible at least than bladder removal....both scare me to be honest. I wish so much there would be a magic pill I could take to make it go away. I am so envious of those who are helped by medications, are you, too? Do you find yourself a bit wistful when reading that meds help most IC patients, too?

                          I heard once that success or failure with Interstim can sometimes depend on the abilities and experience of the surgeon involved. I know that is true of most surgeries - the best results are by the best surgeons. Perhaps it is true of Interstim too. I would be having my Interstim done by one of the leading surgeons for this in the country, so at least that would be in my favor.

                          I did meet with the doctor today and asked if I could also look into two experimental therapies when my symptoms come back - cyclosporin and BCG. Basically I want to try everything and anything before I commit to surgery.

                          But if it's a choice between surgery and living my life peeing 40 or more times a day...I guess I will choose the surgery even though it's a big risk.

                          I don't know how long this remission will last but I sure am enjoying it for now.

                          Do you get remissions sometimes?

                          Thank you for this post.

                          Blessings, Lori


                          • #28
                            Hi Lori. I am so glad to hear you are presently in a remission. When I have a hydrodistention done I only get worse but I did not realize this for many years and I have had plenty of those awaful things. No, I never have remissions but I do have days which are not as painful as others. I try very conservative methods since pain pills don't do the trick. I watch my diet very carefully (how very dull!) and I live in the bathtub with very hot baths followed by very cold compresses applied directly to the bladder and pelvic area. I also do biofeedback and have learned some great relaxation techniques. I guess I have lived with this so long that I am used to it. Yes, it is not a pleasant way to live and I am always peeing but I still am very reluctant to try Interstim. You sound like you have done a lot of research on it though, and I am only beginning my research into it. What is your bladder capacity? Who told you that you might need to have your bladder removed? I am still able to urinate most of the time but I do have retention and a lot of pain. I have heard that of the people who do have their bladders removed, taht some of them still experience pain. what a bummer. Still, you are in remission now so you are able to think more clearly probably and you can decide what is best for you. I sure hope whatever you decide helps you. Heck, I hope your remission never ends so that you don't have to do any drastic procedures! Did you ever try biofeedback? That is probably the best thing I have ever done for my poor old messed up bladder! Thanks for replying and stay pain free! Meg


                            • #29
                              Hi, Meg, my capacity is now about 450cc under anesthesia and when I am flaring that translates into 1/4 cup or less per void. Right now I have good capacity, closer to a cup I would bet, because I am in remission.

                              My uro told me the only options available to me now are Interstim or bladder removal because every other pill and therapy I've tried over the past 4 years has not worked.

                              You know doctors I talk with are wildly enthusiastic about the Interstim, this one doc I am going to now says it helps almost all his patients, they do great on it. But so many IC'ers say it's awful, they've heard awful things about it, etc. Hard to know what to think.

                              I do know that I don't want to spend the rest of my life in an IC flare. One thing I know for sure is that the symptoms will come back - my remissions never last very long.

                              I haven't tried biofeedback but I have an appointment with a physical therapist to try different things including TENS so maybe I will learn something there....

                              It just seems to me that we ought to have more effective remedies than hot and cold for this condition - I sure hope research leads the way soon to a much more effective treatment for all of us. I'm sorry the hydrodistentions made you worse - how awful! I wish there was some treatment that could take these symptoms away from you.

                              I hope that you will have less and less pain each day. My urologist told me that in his opinion, people get better as they get older, with this disease - in some it goes away completely he said. I don't know whether to believe it or not...

                              Blessings, Lori


                              • #30
                                Hi Lori, It just scares me when a doctor says Interstim and bladder removal are your only options. My capacity is usually below 200 CC and as I have gotten older my IC has not improved and certainly not gone away. I have head that it does for some people. Have you read the book, "To Wake In Tears"? It is quite good about IC about a woman who got over it by using non invasive therapies. I use some of her ideas and it helps a bit. I also do pelvic floor exercises which are great and which you will probably learn in physical therapy. I just shutter to think about taking out a bladder which is still able to urinate, if only a little. I am not trying to talk you out of Interstim. Heck, I might have to go that route someday myself but it is not likely. I just am on Information OverLoad at this point and it is darn confusing! By the way, I have never had a doc call me a liar cause I said that meds seem to make my condition worse. They have called me odd, though...LOL....I sure do present a challenge to them. How old are you, Lori?