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I'm soooooo angry!!!

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  • I'm soooooo angry!!!

    3 regular trials and 2 staged trials! I can't believe I put my body through all this for nothing.
    Trial #1 was a disaster. procedure was pure hell. lead was too deep.
    Trial #2 was okay. i had vaginal stimulation and it didn't help. I SHOULD HAVE STOPPED HERE!!!!
    Trial #3 was a disappointment. our goal was to achieve BLADDDER stimulation. had it on table, lead moved after i got up.
    Staged Trial #1 was a bigger disaster. too much sedation. too much fluids. over distended bladder. extreme pain. long recovery. doctor was rushed. lead wasn't placed correctly. no stimulation
    Staged Trial #2. procedure went smoothly for me, i was sedated well. dr had alot of difficulty repositioning lead. intense soreness and pain afterwards from all the poking and proding.
    Xray shows the lead is too deep. Dr thinks suture came loose and lead migrated too deep. some vaginal stimulation. NO improvement in symptoms.
    I would have stopped after trial #2, except I got determined that if we achieved bladder stimulation it could help my symptoms. I have NEVER thought that vaginal stim would help. Because I have had tons of PT and it never helped bladder. PT only helped my pelvic floor. Never helped my freq/urg and bladder pain. So why the BLEEP would vaginal stimulation help my bladder????? Can anyone explain this. I truly don't understand.
    I thought that my Dr and medtronics rep were really listening to me about wanting bladder stimulation. I don't know how the communication broke down.
    Now, It's been made clear to me that bladder stimulation has never been achieved with Interstim. Why did they want me to have a staged trial? I had vaginal stim in Trial #2 and it did nothing. Was it because I was pushing so hard? Now I have a huge scar. Not to mention all this pain and frustration. What the BLEEP was I thinking?
    Interstim is NOT the answer for me. And it never should have been. I can't believe I've gone through all this for nothing. There have been so many complications and problems along the way. My Dr is out of town this week and I'm going crazy not being able to discuss this with him. Right now I'm just so mad I can't see past my anger. Most of all I'm angry with myself for pushing this so hard. I'm so desperate for relief I've been willing to put myself through anything and everything. I think it's time for that philosophy to change.
    I can't wait to get this BLEEPING thing out of me. Monday can't come soon enough.
    Oh, one more thing. Dr suggested that I try another setting. It made my urgency worse!

    I edited this because I know my medtronics rep sometimes reads the boards. I don't want my frustration and needing to vent make this situation any worse.

    [This message has been edited by Melanie (edited 04-03-2001).]

  • #2
    Hi Melanie, I'm so sorry things aren't working out for you. Don't blame yourself for wanting relief from this horrible disease. There have been some people who have had such excellent results with the interstim and you were right to give it a try. I don't have an interstim, so I have no first-hand knowledge to pass on. But, does this make any sense at all -- if you found a placement that increases your urgency, it sounds like you've hit the right spot, are there not some adjustments that can be made that would decrease your urgency? I don't know at what point you give up and accept that the procedure didn't work for you, but it sounds like there's been so many problems with leads moving, etc., that there's still a possibility that with better placement things could work out. Only you can know when it's right to call it quits, and when you do, we all know here that you absolutely gave it your all and we are proud of you for what you've endured and for being such a pioneer. It's experiences like yours that will help them refine this technology and help them get it right for other ic'ers. Give yourself a pat on the back, try to do something nice for yourself, catch your breath, and make your decision whether it is worth it to go on with the experiment or not.


    • #3

      I agree with Yvette on the whole matter.
      Our trials did not give us 50% improvment but we went ahead anyway. And she and I are doing a lot better than we were with out it! I'M GLAD WE DID IT!!!! I even turned my Interstim off for 4 days and WOW WHAT A DIFFERENCE IT MADE!!!!! I could not wait to turn it back on. Our doctors told us if in finality the interstim did not work they would take it out for us. You never know till you try. Sorry but I agree with her. I feel the stimulation in my vagina,butt cheek, and down my leg into my foot, and that is where it helps the most not in the bladder. if you were trying to reach bladder stimulation that is not the point of how the Intestim works. It works by stimulating the nerves that control your bladder which are not in the bladder they are in the sacral area specifically S3 and for some people S2 and S4. I personally would go crazy if they tried to stimulate the bladder! I know it's confusing but the bladder is not what is supposed to be stimulated just the nerves that control your bladder which happen to be felt in the vaginal area, butt, leg, and toe, and for some the rectum. In my heart I would get another doctor who is more experienced with the Interstim and who can help to explain some of the confusion to you. You can't have a perfect trial becasue there is no such thing and with all of the variables they gave you freedom to try and not enough time there is no way for you to see any static results.


      [This message has been edited by Kara23 (edited 04-04-2001).]

      [This message has been edited by Kara23 (edited 04-04-2001).]

      [This message has been edited by Kara23 (edited 04-04-2001).]


      • #4
        I keep rewriting this post. Let me just say this. We are all different. I have had 5 trials with no success. Vaginal stimulation does NOT help ME. I am absolutely NOT getting the implant at this point. We (myself, my medical team and my family) have agreed on this strategy. If you agree with Yvette, then you should read my response to her written above.
        I suppose I opened myself up for ridicule. I'll think twice about posting again in the future.


        • #5
          Melanie, I absolutely understand your point of view. The interstim is just not for everyone. I'm sorry it didn't work out well for you and hope you will find another alternative.

          Is it next Monday you're having the wires removed? I hope so; now that you've made your decision I'm sure you will be relieved to have it over.

          Sending healing thoughts,
          Stay safe

          Elmiron Eye Disease Information Center -
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          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help:


          Diet list:

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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.

          Anyone who says something is foolproof hasn't met a determined fool


          • #6
            You have given it your all. Follow your heart. It doesn't matter what others think. Your confidence in your doctor comes through loud and clear. Don't let anyone undermine your confidence in your decision or your doctor. You have been so brave. I'm not sure I could have gone through all you did without the encouragement of a successful trial. Which does not mean I think you were wrong to try so please don't get down on yourself for the choices you have made. hindsight is 20/20. If this had worked it would have been worth it. The only way to know was to try. Whatever you have chosen to do is the right thing for you.

            I say this from the bottom of my heart. As an interstim success I pray that I have not ever posted anything that has hurt you or felt to be critical. I also hope I have never mislead anyone and caused them to jump into this too quickly.

            In fact I don't post here often precisely because as much as I want to help I don't know how as a success I can help those who are struggling and for whom interstim doesn't help.

            Emotions are so charged about interstim that sometimes I fear that the less said the better. Yet at the same time it would be just as wrong to only post the negative experiences as to only post the positives.

            To everyone who thinks they know what is best for someone else-you can't possibly know so don't presume to try. Those of us who are successes post over and over again reminding people that this is not approved for IC, that most people do not believe it helps pain and that there is alot we do not know.Interstim does not come with any guarantees, it only comes with caveats.

            Therefore, when interstim fails you have every right to feel whatever you are feeling. But it is not right to blame the patient, the doctor or the technology for interstim not being a panacea. No one says it is. Anyone who goes in expecting a guaranteed success is deluding themselves. No one should take the risk of the interstim without realizing it can fail. Sure you can be angry, depressed, feel hopeless but don't doubt yourself if you tried it and don't criticize the person who tried it and did not get success. It must be devastating. They need love and support, for us to be with them in their pain and hold them tight until they feel they can go on despite the pain and disappointment.

            I sure hope what I am trying to say is coming out the way I mean it too.

            Melanie, I don't really know how to help you but I want you to know that I care and wish I could just make it allbetter for you. You are so brave and so strong and probably can't see that right now, or see it but feel yeah, so where did that get me. I don't know, I only know you did what you needed to do and you are doing what you need to do now. Be good to yourself and let others be kind to you as well. With much emotion and tears, I wish you peace and healing and a wonderful life with your new hubby when you get past all this garbage.Ruth


            • #7
              Thank you from the bottom of my heart. I hope others read your post and benefit from your advise.
              take care,


              • #8
                I just wanted to let you know that I support you in your decision. I hope that at some point you won't feel regret over trying this one last time. I know if it were me, I would have always tortured myself with "what if it worked and I didn't try?" And we must try...we can't give up.

                For now, it's healing/rest/recovery/rejuvenate-the-spirit time. If there is anything I can do to help, please don't hesitate to email me ([email protected]). As always, you remain in my thoughts.

                Sending lots of support and comfort,
                Melanie J.

                [This message has been edited by MelanieJ (edited 04-05-2001).]
                "The sun shines not on us, but in us." John Muir

                Living a happy life in spite of IC!


                • #9
                  I support you in your decision as well Melanie...
                  You are a strong person and sure were a fighter in all of this...
                  I agree with my bionic twin (Ruth) , I could of said it better...

                  Just know I am here for anytime and I do care about you Melanie and I am so very proud of you...
                  I hope you lots of happiness in the near future with your new hubby...
                  Hoping the pain and healing will go away soon..
                  Sending healing thoughts to you Melanie...

                  Lots of Tender Hugs: Debbie...

                  P.S. Sorry about those typing error,BY NO MEANS did I mean to do that Melanie!!!!

                  [This message has been edited by DebbieB (edited 04-05-2001).]
                  Thinking positive has got me through to another day!!


                  • #10
                    I believe that it is now approved for IC.


                    • #11
                      I copied this from Jill's original post. It's her reasons why "challenges" needs it's
                      own board. I think it says it all.

                      "Patients with failures.. or non successful outcomes.. have a completely different
                      set of needs. They don't want to hear about your success stories. They need a
                      shoulder to cry on. They need to know that they are not alone. They need to be
                      able to talk with others that it didn't work for.. so that they know what other
                      options they have. They need to commiserate. They need to work with often very
                      intense feelings of despondency."

                      I am posting this as a reminder that I need support. I need support that I am making the right decision for ME. If you don't agree with my decision and can't support me, please don't force your opinions on me right now. It's not helpful, it's very hurtful. I am sincerely happy for those that Interstim helps. But we are each different.
                      A sincere thank you to those of you who have supported me through this entire ordeal.

                      [This message has been edited by Melanie (edited 04-05-2001).]

                      [This message has been edited by Melanie (edited 04-05-2001).]


                      • #12
                        {{{{{Melanie}}}}} I've said it before and I'll say it again~you are one of the strongest people that I know. It has taken such courage and strength for you to get to this point and I can't even begin to imagine the heartbreak that you are feeling. Had my 1st trial not been succesful, I would NOT HAVE HAD THE COURAGE to do what you have done. I would have hung my head like a hurt little puppy and given up. You didn't and in your heart you will always know that you gave it your very very best try. I commend YOU and YOUR dr's and agree with you. It's time to move on. We have been here for you from the beginning of this and will continue to be here for you. We are NOT divided. We are all sisters in this shi*-bag of a disease, and I pray that we all stay sisters ~ looking forward....
                        tons of hugs~teri
                        Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


                        • #13
                          I'm just wanted to say how sorry I am for you. I don't have any experience with any of this but have read your on-going saga and my heart hurts for you. I just got diagnosed in Dec 2000 and I have so much to learn yet. I just wanted to send support and your right a success story is not what you need right now. How can we hurt each other with this disease and how can we not support or respect anothers way of dealing with it or trying to deal with it? I cried many tears over reading your posts and to me you gave it your all. Good luck on your up-coming wedding and my prayers are with you to find a treatment that will help you.
                          I may not know the future
                          but I know who holds the future
                          Thank you Jesus!