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We have found the ANSWER!

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  • We have found the ANSWER!

    Along with End Stage Intractable IC, I now know the answer to what has been haunting me now for 9 years. I had my 3 month visit with the doctor that set me on the path to the answers. It's called for sure now Pudendal Nerve Entrapment. We have found the ANSWER finally!

    The treatment is the hard part. I will eventually have to have surgery. I wanted to do it after my best friend and sister's wedding and my mom's operation (lumpectomy/mastectomy) and her first few rounds of chemo and radiation which will start soon. In the meantime there are a few more things I can try to alleviate the pain while I wait.

    1.Oxycontin 12 Hour Extended Release and for a very last resort, Fentanyl (he knows I don't want to be on that if we can help it)

    2. External and Internal 5% Buffered Lidocane that I will apply outside of the old urethral area and inject with a syringe on the inside area every 2 hours (If it doesn't burn me)

    (The goal of this is to depolarize the pudendal nerve over time)

    3. I will be going in for continuing lidocane injected pudendal nerve blocks for, Once a week for 4-5 weeks. The goal of this is that over time the lidocane is supposed to build up and the goal is to depolarize the nerve so that there will hopefully be a time when one nerve block will last more than 12 hours, possibly a few weeks at a time....I will be spending lots of time with my Mom because the nerve blocks will be done by same AWESOME doctor (Dr. W) that has been doing them over these past months. He puts me to sleep for them which is here in Rochester. That will start in a few weeks.

    4. If none of the above works, they will do Pudendal Nerve Decompression Surgery (If I have to do this surgery, I am going to have the doctor in NH do it in August or September)

    5. I am still going to see the Pudendal Nerve Specialist in NH in a few weeks. He does a specialized test that does not exist here. It's more specific as to what part of the nerve is entrapped. They think it's the right side but we will know a bit more after the EMG test of the urethra.

    Also formally diagnosed with VulvoVestibulitis. Specifically on the right side which will be fit into the PNE surgery at the end of the summer/early fall. Because of the way I have been sitting from the PNE, they feel that I may have developed Coccydynia.

    I am not entirely sure what the future will hold, but I will keep on trying.

    Here WE GO!!!!! Onwards and Upwards!

    Last edited by Kara29; 02-23-2007, 04:18 PM. Reason: added information
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at: and

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  • #2
    Finally! You go girl! I'm behind you 100%, You know where to find me if you need me! Love yeh!
    Sandra & family
    "Never Give Up."

    To view pictures of my creative interests and Maine Coon kittens click here:[email protected]/

    My Photobucket Link:


    • #3

      i know you have been looking for one for years!!!!

      Hopefully some pain relief is not too far behind now.
      wife to Jeremy
      mom to Emma (3-8-05)
      and Natalie (7-23-07)

      Meds i'm currently taking:
      Lortab as needed for pain

      Meds that did not help:
      Detrol LA
      Lexapro (caused urgency)
      Amatryptaline 10mg once a day (helped IC but made me feel like CRAP)


      • #4
        That IS good news!

        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:

        AUA Guidelines:

        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


        • #5
          I am so glad that found out what is going on and that you have a treatment plan. That is wonderful. Now you can be on the road to recovery
          Miss Bessie

          Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

          Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

          Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life


          • #6
            Sounds GREAT --I am so happy for you!!!

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. 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.


            • #7
              I am SO glad they finally figured it out for you. I know the treatment will be tough, but at least now you know what it is and can start treating it instead of just being in a cloud of the unknown.

              You also give hope to some of the others that are having trouble with their docs and diagnosis of additional have been through so much, so many unanswered questions, and finally you are able to have a plan.


              "A heart is not judged by how much you love; but by how much you are loved by others."
              ~ The Wizard of Oz

              "If I ever go looking for my heart's desire again, I won't look any further than my own
              back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


              • #8
                So glad you finally have answers and a treatment plan. I hope and pray that it works for you so you dont have to have the surgery. But, if you do have the surgery, hopefully it will finally put an end to your pain.

                Love and hugs,


                • #9
                  That is great news and your attitude is one of remarkable strength and positive vibes. I think this is wonderful and you are a fighter, evidently, and a good one at that! I look forward to getting to know you, as we all take this IC journey together.

                  Best always,


                  • #10
                    Yay Kara! :woohoo: :woohoo: I so hope this is the answer and your are able to find lasting relief. Lord knows you deserve a break!

                    (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                    [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                    :angel: IC Angel Volunteer Coordinator :angel:
                    :) Contact me via PM or e-mail if you would like to help
                    I have learned all about life in 3 words: It goes on! :D--Robert Frost
                    PCOS 7/85
                    RSD 7/94 :headbang:
                    Endometriosis 9/98 :toilet:
                    Antiphospholipid antibody syndrome 9/99
                    Kidney stones--too many to count
                    Factor V Leiden mutation 10/02
                    IC 6/03 :evilsmile
                    Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                    "Spirit is an invisible force made visible in all of life"--Maya Angelou
                    "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]


                    • #11
                      I'm so glad for you! Good Luck!


                      • #12
                        Fantastic news!!!:woohoo:
                        Meds I take:
                        Elmiron, Elavil, Vagifem- for IC
                        Albuterol, Flovent, Atrovent- for Asthma and lung problems
                        Paxil, Clonazepam- for depression and Anxiety
                        Atenolol- for rapid heart rate
                        Nexium- for Gerd
                        Levothyroxin- for Hypothyroidism
                        Lasix, Pottasium- for edema
                        Lipitor- for High Cholesterol
                        I coated aspirin
                        02 at bedtime


                        • #13
                          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!


                          • #14
                            This is great news! It's wonderful to finally have a certain answer and a path that will lead you to freedom from pain.

                            Remember I said to mark that date on the calendar, the day when I said you would be free of pain? I think you are going to be free of pain well before that day is here!




                            • #15
                              Oh, Kara, that is wonderful to hear! I firmly believe this course of treatment will work, because (a) it makes sense and (b) surely the Universe knows by now that it owes you a break!

                              You keep believing in it too. I really believe that can help.

                              Talk to you soon.

                              :woohoo: :woohoo: :woohoo: :woohoo: :woohoo:
                              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                              Wishing you happiness and good health, and all the best out of life.

                              Peace, Carolyn

                              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

                              On the Beach with IC