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  • #1

    Official Diagnosis Is Here

    After my very long trip to NH a few weeks ago, I just received the official Pudendal Neuralgia Diagnosis with Pudendal Nerve Entrapment on the right side with significant Vestibulodynia. This is the source of my ex-urethral urgency. Going forward I will continue the treatment plan that the Doctors in NH and in NY have set forth for me. Some tweaking of the treatment plan may need to be made along the way. I am a lot further than I was 5 months ago where we had no idea what was happening and or why. Now we know.
    I have 3 Doctors that all have ways that they like to do things and that is getting a bit hairy.

    Kara
    Last edited by Kara29; 04-08-2007, 12:48 PM. Reason: Spelling
    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:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.
    Tags: None
  • #2
    Oh gosh, Kara.....Sorry about the diagnosis, but at the same time..I know it feels relieving to KNOW exactly what is causing this pain! I just hope and pray that your 3 doctors work together and not against each other and for YOUR BEST INTEREST! I hope this gets resolved soon! I'm not too familiar with the condition, but I really pray that you get better.

    Love,
    Kara

    PS. Still looking forward to chit chatting about the book
    Hugs and Wishes for Pain FREE days!!,
    Kara

    www.loveforearth.net ~reducing plastic waste one bag at a time~

    Facebook: Kara Kaiser
    Twitter: Love4Earth

    Me and my Guccigirl... she helps me through those painful hours!

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    • #3
      It sounds like you are finally making some progress. Hopefully very soon you will feel like a real human being!


      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      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.

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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.       [3MG]

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

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      • #4
        Hi Kara,

        Finally they found out what is going on and what is causing the pain. I hope now they can find treatments that will help you with the pain issue.

        All my life I heard statements like "When a person deals with alot of pain they are able to deal with pain better." I don't agree with that statement at all. I think the body only can take so much and then pain gets even more severe because the body becomes exhausted.

        I am so sorry Kara you have been through so much especially with pain issues. I hope these doctors can continue to help relief some of the pain issue. Kara I sure do give you an A+ on your determination on finding an answer, that is probably why eventually you do get answers, it is you who keeps on fighting.

        Kara I hope your Mother is doing well. I know this also much be a heavy load to carry too. I hope chemo. is not making her sick.

        Sending hugs, Trishann

        Comment

        • #5
          Kara
          Where did you go in NH?? I live in NH and I am wondering if you go to the same place I do. I live 2 1/2 hrs away from the hospitla but many people travel to Dartmouth hitchcock from further places. I would be interested in knowing if we see the same doctor. My doctor did most of his training in cleveland. He also goes to a Manchester hosital a few times a month.
          Glad you have a diagnosis. I hope they are able to treat it now.
          I was happy to finally have proof of my diagnosis. So many doctors think it is all in our heads.
          IC/IBS Hopeful : I had my bladder removed on September 29, 2008 for me but I am also so happy I have no regrets

          Comment

          • #6
            Kara, Donna, Trishann, and IC/IBS,

            Thank you for your support. I am kind of feeling very alone right now.

            My Doctor in NH works out of a small OBGYN office in Merrimack.

            Kara
            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:
            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

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

            Comment

            • #7
              Kara,

              Just saw this post. So glad you finally have some news. Sorry I have not been around much. You are always in my thoughts and prayers even when I am not around. Hang in there!

              April

              Comment

              • #8
                well its about time.. geesh... I am so glad you finally got an answer.. may every thing contiue to improve for you now. You have been thru so much already.
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment

                • #9
                  See your not crazy! Glad you are finally getting the help you need & deserve. Im so proud of you! You have hung in and overcome! You truly are a amazing woman , Just like your Mom .
                  Hugs Sandra & family
                  "Never Give Up."

                  To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                  My Photobucket Link:
                  http://s237.photobucket.com/albums/f...ramack_photos/

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                  • #10
                    Kara,
                    I am a NE girl born and bred. I know Merrimack very well. Also I am glad you are making progress and before long I hope you are pain free. Now once you are pain free go on a sight seeing trip to NE. White Mountains in NH, ocean in Boston and go to Maine my home state. Most beautiful part is the coast of NE. Maine is beautiful. Go along the coast through Freeport and up to Bar Harbor. Gorgeous. And you will be painfree to enjoy the view.

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