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I don't have to enter the uro office for a year!!!!!!!!!

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  • I don't have to enter the uro office for a year!!!!!!!!!

    Today I had my 4 month check up on my Interstim implant. Well ok 3 month and 3 weeks. It was so odd for me to leave and for her to say I only have to come back ONCE A YEAR now and that I will be seeing the Physicians Assistant for that unless I have any problems. I love the PA at the office so that is fine with me. I FELT LIKE I was getting a divorce after have been in my URO'S office SO OFTEN over the past 22 months.
    I'm so happy I did this. To be honest when I began investigating the interstim on here I was afraid of it because of all of the negative posts that were here at that time. I even delayed putting it in. Finally I decided that I HAD nothing to lose and MAYBE something to gain by moving forward with the implant process. In my individual case I LOST NOTHING and GOT MY LIFE BACK. It was worth it. I wear a medalert bracelet, I may or may not need an MRI one day. If I do then I'll have the interstim taken out and then replaced. I get to go shopping, out to eat, ride in a car, spend time with friends and family and go on vacation with out feeling like I HAVE TO PEE EVERY MOMENT OF EVERY DAY!!!!!! It's worth it. The pain and agony of the urodynamics, medication failures, the exams,the anxiety, the fear, the trial and the implant process was WORTH EVERY SINGLE MINUTE!
    On top of that my IBS is so much better because of the effects of the interstim. FOR ME IT WAS WORTH IT. It would have been worth it if hadn't worked because then I knew I would have exhausted every avenue I could to be as healthy as I could be with PFD and IC and IBS.
    I'm posting this because I don't want people to be afraid of the interstim. I know that it doesn't work for everyone, but it does for some of us. So for anyone reading this do your homework, find the BEST UROLOGIST you can, ask as many questions as you need to. But please don't be afraid of life with a successful interstim implant. Nothing is guarenteed but you don't know if you don't try.
    This diagnosis is just one more thing in a list of annoying other condidtions I have like many of the rest of you...

    I AM NOT A DR. I CAN ONLY SHARE MY EXPERIECES.

    NOTHING THOUGH will DEFEAT ME!
    IC/PFD Diagnosed July 2009

    Bipolar (diagnosed at 30) ( Which means I am VERY wary of taking any other kind of antidepressants) currently on Trileptal, Seroquel.. Can't even REMEMBER all the ones I can't take

    IC Diet since 7/2009
    Interstim Implant 10/2010

    Fibromyalgia (14)
    TMJ (Adult)
    IBS (Diagnosed at 35)


    :woohoo:

  • #2
    re read

    I re-read my post and do want to make sure that I point out that I DO FOLLOW THE IC diet and will always have to do so. Wearing heels comes with a price to pay. I have had a couple of flares and may continue to do so. I know I am early in my implant status I will be horribly disappointed if it fails me one day. But regardless of what happens good bad or ugly, I am so thankful for the aprox. 95 days of relief I have had so far.
    At the end of the day all surgery comes with risks.
    I did know the all the risks of this surgery ALL OF THEM I was thoroughly informed by my URO. My Medtronic rep did nothing but be upfront and truthful. I knew I had an excellent Dr. who was experienced in placements . I made this choice to move forward, all 4 of my leads work great. I consider my self lucky. Some of us do have success.
    Last edited by babybuns; 02-25-2011, 05:18 PM.
    This diagnosis is just one more thing in a list of annoying other condidtions I have like many of the rest of you...

    I AM NOT A DR. I CAN ONLY SHARE MY EXPERIECES.

    NOTHING THOUGH will DEFEAT ME!
    IC/PFD Diagnosed July 2009

    Bipolar (diagnosed at 30) ( Which means I am VERY wary of taking any other kind of antidepressants) currently on Trileptal, Seroquel.. Can't even REMEMBER all the ones I can't take

    IC Diet since 7/2009
    Interstim Implant 10/2010

    Fibromyalgia (14)
    TMJ (Adult)
    IBS (Diagnosed at 35)


    :woohoo:

    Comment


    • #3
      Good for you! would say it's more like being released from prison after a long sentence. So glad you found something that works, and hope it does for a long, long time.

      Comment


      • #4
        That is so excellent! Did you have pain with your IC? and did it relieve it?

        My mother had the trial done 2 weeks ago and it worked so well she had the "real" surgery done for it yesterday. I don't know what your symptoms were but she has gone from going to the bathroom 3 times an hour to once every 2 hours. She also had urge and stress incontinence which have both disappeared. Its truly amazing if it works for you. She never had pain though and I know it doesn't work as well for some in that regard so I would be curious what your pain level was.
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment


        • #5
          i am so happy for you, i too wish it would work for all.
          <center>
          <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
          </center>

          Comment


          • #6
            Originally posted by cmclien View Post
            That is so excellent! Did you have pain with your IC? and did it relieve it?

            My mother had the trial done 2 weeks ago and it worked so well she had the "real" surgery done for it yesterday. I don't know what your symptoms were but she has gone from going to the bathroom 3 times an hour to once every 2 hours. She also had urge and stress incontinence which have both disappeared. Its truly amazing if it works for you. She never had pain though and I know it doesn't work as well for some in that regard so I would be curious what your pain level was.
            NOONE TOLD ME THAT THE INTERSTIM TREATED PAIN. My Uro was very clear about that.
            I had urethral pain,sharp stabbing vaginal pains and pelvic pain when I first went to my General Practioner 2 years ago when this really kicked in. My GP is a smart gal. By the time I was starting my 3 round of Antibiotics my GP suspected IC and referred me to the URO. I constantly felt like I had to pee. I was SOOOOOOOOOO uncomfortable with this weird pelvic pain that feels like needles pricking me from the inside out. The urethral paticular pain piece cleared up a lot WHEN I WENT ON THE IC DIET, The pelvic pain did some. If I am flaring ( like when I try to eat spaghetti) the prickly pelvic pain feeling comes back with a vegence. I immediately start drinking FIGI water to help flush out my system. That feeling also comes back when my IBS is bothering me. So, FOR ME because my IBS is so tied into the urge sensation for me that pevlic pain piece has lessened. When I wake up in the morning though I feel that same REALLY PRICKLY sensation I associate with the IC. When I am ANXIOUS I feel that sensation more. If I have an IBS FLARE (either constipated or strong voiding cramping I HAVE THAT SENSATION that makes me flare).
            I also had physical therapy and it did nothing for me. Curiously what did seem to give temporary relief was massage. My massage therapist used to be sports therapist and really knew anatomy. So we focused on the pelvic floor muscles externally and found at the base of the pelvic bones ( so your butt) I HAD HUGE knots of muscles. My physical therapist told me she thought the massage was helping me more than the physical therapy was. After the massages the physical therapist was SHOCKED at how much more pliable my vaginal walls were. The prickly pain/frequency/urge relief though just lasted a day or so.
            FOR ME, the final straw in deciding to move forward with the interstim was that the Interstim had been approved for treatment of IBS in EUROPE and was in trials here. I still don't know if it has been approved here in the U.S. It was WORTH it for ME if I had a chance to help with the IBS as well as the URGENCY FREQUENCY. ( NOTE: I was told that the sucess rate in Europe for the treatment of IBS was less than that of PFD and the TRIAL for IBS is 3 weeks, My trial was for PFD and did not seem to effect my IBS during those 5 days. I did not know if the Interstim would help my IBS. I only knew it might be a possibility ). I can feel the interstim pulses in my pelvic muscles as well as my vaginal walls on couple of my settings though I know that it is affecting those muscles on all settings. In my last follow up I was discussing with my URO if she still felt I had IC and not just PFD she said she felt I had both because I did start flaring when I went off the IC diet.
            This is just my experience. In the end on most days I can go 2 hours with out having to pee and I "void my colon" on a more regular basis than I did before. I decided to move forward with the interstim because I had nothing TO LOSE. I had already lost my way of life. I had lost "normal" as my Uro put it. She was honest and upfront with me. Her office also offers a nutritionist, an accupuncturist and has and IC support group. I just wanted my experience documented here because I was so afraid of the interstim because of everything I saw here. Interview your Doctor well. Talk to more than 1 Uro if you are not comfortable with your first Doctor but don't quit trying.
            This diagnosis is just one more thing in a list of annoying other condidtions I have like many of the rest of you...

            I AM NOT A DR. I CAN ONLY SHARE MY EXPERIECES.

            NOTHING THOUGH will DEFEAT ME!
            IC/PFD Diagnosed July 2009

            Bipolar (diagnosed at 30) ( Which means I am VERY wary of taking any other kind of antidepressants) currently on Trileptal, Seroquel.. Can't even REMEMBER all the ones I can't take

            IC Diet since 7/2009
            Interstim Implant 10/2010

            Fibromyalgia (14)
            TMJ (Adult)
            IBS (Diagnosed at 35)


            :woohoo:

            Comment


            • #7
              I am gettting the trial done on Monday. Hopefully, I do as well as you.

              Comment


              • #8
                GOOD LUCK!!!!!!!!!!!!!!!! It's a marathon not a race to be sure.
                This diagnosis is just one more thing in a list of annoying other condidtions I have like many of the rest of you...

                I AM NOT A DR. I CAN ONLY SHARE MY EXPERIECES.

                NOTHING THOUGH will DEFEAT ME!
                IC/PFD Diagnosed July 2009

                Bipolar (diagnosed at 30) ( Which means I am VERY wary of taking any other kind of antidepressants) currently on Trileptal, Seroquel.. Can't even REMEMBER all the ones I can't take

                IC Diet since 7/2009
                Interstim Implant 10/2010

                Fibromyalgia (14)
                TMJ (Adult)
                IBS (Diagnosed at 35)


                :woohoo:

                Comment


                • #9
                  good post. i think this site is much to negative when it comes to interstim. i don't need it, but if i did i would try it. there is lots of supportive research behind this treatment and it is reversable. with that said there are horror stories about it just like every treatment out there.
                  What helps
                  Elmiron 200 mg bid
                  Wellbutrin XL anxiety and depression
                  Oxybutynin ER 10 mg
                  Yoga


                  tried and failed
                  Cardura, Hytrin, Flomax, Prosed DS, Vesicare, Pyridium, Cystoprotek (caused GI problems), Lyrica, Pamelor

                  "We can't wait until the storm is over. We need to learn to dance in the rain."

                  Comment


                  • #10
                    that is great news!!!!!!. In fact, anytime a doctor says they don't need to see you till next year unless problems come up.

                    Comment


                    • #11
                      Thinking Interstim

                      Congratulations BabyBuns Your post is encouraging to me and has given me lots to think about before I go in for an appointment next week to discuss possible Interstim. I like you, am ready to do whatever it takes to take my life back. I've been battling debilitating frequency and pain for the past four years and have spent the last eight months fighting off UTI's and increased issues to the point IC has become my life. Thank you for sharing your story of success. I am delighted for you and hope whatever path I choose to take leads to improvement and a future success story of my own.

                      Comment


                      • #12
                        Trial

                        JKS, Praying that your trial was a success!

                        Comment


                        • #13
                          Almost 2 weeks into the trial and have had a little improvement but no stellar results. It also got infected so put back on antiobotics and it is getting better. I have a little over a week left so hoping for better results.

                          Comment


                          • #14
                            I didn't feel that my trial was a "STELLAR OVERWHELMING LIFE CHANGING" experience either. HOWEVER my URO was pleased and as I've said before I figured I'd go ahead with the implant and fortunately for me I've done well. It's important to remember that the interstim decision is such a personal journey for all of us. As always I encourage people to research as much as possible, find a URO who is experienced with the implants till you come to your best decision for your life.
                            This diagnosis is just one more thing in a list of annoying other condidtions I have like many of the rest of you...

                            I AM NOT A DR. I CAN ONLY SHARE MY EXPERIECES.

                            NOTHING THOUGH will DEFEAT ME!
                            IC/PFD Diagnosed July 2009

                            Bipolar (diagnosed at 30) ( Which means I am VERY wary of taking any other kind of antidepressants) currently on Trileptal, Seroquel.. Can't even REMEMBER all the ones I can't take

                            IC Diet since 7/2009
                            Interstim Implant 10/2010

                            Fibromyalgia (14)
                            TMJ (Adult)
                            IBS (Diagnosed at 35)


                            :woohoo:

                            Comment

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