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  • #1

    Guidelines for Posting in this Forum

    Before you post things in this forum please keep these things in mind.

    If someone is scheduled to have surgery they need SUPPORT. Do not post negative comments.

    Do not post horror stories if it has not happened to you personally.

    It is not your place to tell people whether they should or shouldn't have surgery. That is only between the patient and their doctor.

    If you have a problem with something someone has posted contact me, Donna, Jill, or PM that person IN A RESPECTFUL MANNER. This forum is not a place for bickering or disagreements.

    If you are against the surgery then please do not post here, or PM people to try to talk them out of it, or tell them scary stories.

    If you have had the surgery and are having a rough time, then you are more than welcome to talk about what you are going through and ask questions. I/we am/are here to help support you before and after.

    Before you hit the button that says "submit reply" reread what you wrote and ask yourself if it is something you would want said to you.

    Thank you.
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  • #2
    Great Guide Lines Judith. We definitely needed this!
    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 These are old and my ICN Patient story is very old and outdated.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

    • #3
      Surprising news! Have end-stage ic

      Hi!!
      I haven't been to this website for quite a while as I have been having a difficult time coping with the extreme bladder and pelvic pain I have had for 35 years. It actually took 22 years to get the IC diagnosis by my GP who is great at diagnosing, especially when you suffer with a medical disease like IC. He then referred me to my present uro who is also great and very supportive.

      The pain was getting so bad and my uro has run out of options for treatments and for treating my pain. So we decided to try a C & H which I had on August 3. Unfortunately, before he put any pressure on my bladder, it popped a perforation at the top of my bladder and he stopped the procedure. I gather everyone in the OR was very surprised and shocked at the condition of my bladder which is end-stage: very thin, scarred, low volume, etc.

      This was to be a one-day procedure but due to the perforation I woke up at 3 a.m. the next day in terrible abdominal and bladder pain. My husband called 911 and I had my first ambulance ride! The paramedics (all four of them in my bedroom and me in my pink flannel gown)
      were super and soon had the IV in place giving me morphine for my excruciating pain. I was admitted to the hospital and was soon hooked up to a Foley catheter which was a new experience for me. I spent just short of a week in the hospital and went home with my "new friend" which I and my husband were leary about at first. The nurses (both in the hospital and Home Care) were fantastic and we soon had the cath. care under control. I wore it for ten days to give my perforation a chance to heal.

      I had no problems (at first!!) when the cath. was removed but within a few days I was experiencing severe urethral pain which I usually only get when I have a UTI. I had already submitted one urine sample which showed pus but my GP wanted me to submit another one which I did on August 20. My GP phoned me the evening of the 24th to tell me I have a severe UTI (I am in Canada and a rating of 10**6 indicates a moderate infection but I have a 10**8 UTI with lots of pus and bacteria (KLEBSIELLA) so I am on CIPRO 500 mg. twice a day for one week. The urethral pain was so bad that I felt as though I was peeing through glass and/or razor blades. I had to close myself into the bathroom so my husband wouldn't hear my crying as the pain was more than I could cope with!!

      I have now taken four CIPRO and I can feel a "smidgen" of relief and even that little bit gives me hope that the pain is caused by a UTI and that the pain in my urethra will soon disappear (according to a special lady named JILL). Speaking of Jill, I have to thank her so much for her help and support via e-mail and phone. If it were not for her experience and knowledge and compassion, these past few days would have been even worse. So many thanks, Jill, for getting me through a difficult time and I hope I am on my way to recovery (at least as far as this UTI is concerned).

      Then there is the next step which my uro said is going to have to happen one day in the not too distant future: having my bladder removed due to being end-stage and in his words the worst bladder he has seen in all his years working in Urology. In fact, he said he was so shocked at the state of my bladder that if he had known in advance how bad and very thin it is, he would not have attempted the C & H and he even apologized to me when I told him I was very disappointed that he had not told me in advance of the procedure that perforation was a possibility. As he said, he never thought in a million years my bladder was as bruised and battered as it is.

      I have asked him for a second opinion from a urologist in another province in Canada who is well-known here and I have spoken to one of his patients whose bladder he removed about eleven years ago when she was 75 years old and now at 86 is doing very well with having her bladder removed which is very reassuring for me.

      I am not thinking about the surgery just yet as I need to recuperate from the last three weeks which have thrown me and my husband for a loop!! I hope to be able to keep my bladder as long as possible because I have already had eleven surgeries in my abdomen and pelvis plus two car accidents and many adhesions from all my surgeries.

      I would appreciate any advice or support from those of you who have gone ahead of me and had their bladders removed. Thank you so much for any "pearls of wisdom" you can offer me!!

      LOUISE

      Comment

      • #4
        Sorry to hear all you have been through. I hope you are on the path to feeling better. MG
        My are with you all. May you all find a way to peace and joy in your lives.

        Comment

        • #5
          I have not had to have my bladder removed, but wanted to let you know I'm thinking of you and sending well wishes your way.

          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.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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

          Comment

          • #6
            Thank you so much!!

            MG & DONNA, YOUR MESSAGES MEAN A LOT TO ME AND I THINK IF I AM GOING TO HAVE THIS SURGERY AT SOME POINT I AM GOING TO NEED A LOT OF ADVICE, SUPPORT AND COMPASSION. I AM FORTUNATE THAT I HAVE A LOT OF IC AND NON-IC FRIENDS WHO ARE THINKING OF ME AND WONDER HOW I HAVE ENDURED THIS MANY YEARS OF PAIN AND SUFFERING. SOMETIMES I WONDER MYSELF HOW I DO IT, BUT I FEEL MY MOTHER WAS INSTRUMENTAL IN GIVING ME THE STRENGTH I SEEM TO HAVE TO COPE WITH THIS MANY YEARS OF ONE MEDICAL PROBLEM AFTER ANOTHER. ALSO, I HAVE TO GIVE A TREMENDOUS AMOUNT OF CREDIT TO MY HUSBAND OF ALMOST 42 YEARS (WE GOT MARRIED WHEN WE WERE TEN YEARS OLD!!) FOR BEING THERE WITH ME THROUGH THICK AND THIN. IT REALLY HURTS HIM TO SEE ME IN PAIN AND HE DOES EVERYTHING HE CAN FOR ME TO EASE MY PAIN.

            THANKS AGAIN TO BOTH OF YOU!!
            LOUISE

            Comment

            • #7
              louise i hope you are feeling better soon. i too have severe ic and running out of options. i sure hope the cipro helps some of your pain/burning
              courtenay

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