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  • I'm feeling "blue" on Valentine's Day

    Happy Valentine's day to all you Canadians. Can't say, speaking for myself, that I've had much worse ones. I'm having a flare, but no infection, but have been in a lot of pain. Take HM Contin 21mg twice a day, Dilaudid 4-6mg per day, Temazepam for sleep, Elmiron, CES and Vagifem, Fosomax, have had a complete hysterectomy at age 43 and all my problems seemed to really start then. I am 55 now, have had constant pelvic pain and infections for the past 12 years, first I was doing self-catheter, then my new Urologist stopped that and put me on Elmiron. That doesn't seem to be doing any good, so he is now going to do a Cystoscopy Hydodistention next week, even though he never did this to diagnos IC, he says he has had very good results at using this procedure as a treatment for IC. Is there anybody else that has heard about this test being used as a treatment???? I'd really like to hear from you. I see Dr. Teichman at St. Paul's Hospital in Vancouver and have to travel back and forth from the Sunshine Coast, which makes types of various treatments impossible. Also, our health system, but that's a whole other ball of wax. Where are all our Canadians. Help!!! I'm really afraid of getting another infection while I'm in hospital getting this done. I've just about run the gammet of antibiotics, and the last one they had to give me IV, which really burnt my veins out, or should I say, in? Should I perhaps start an antibiotic before I go in for surgery, just in case?
    Oh, my husband is trying to be kind, but I can tell that he's feeling ignored, especially today, but I don't want to start anything with him and give him false hopes, you know how it goes, don't you, girls? I love him dearly, and he has been so very patient, but he is as befuddled about this IC as I am. He really doesn't want me to be in any more pain than I'm already in, but everytime we have intercourse, I have a blood tinged, discharge. Sure hope the Dr. will be able to tell me something more when he does this to me next week. Wish me luck and Happy Valentine's Day, Canada!!
    Curlette
    Hugs,
    Curlette

    Drugs I use now:
    HM Contin 12mg twice daily
    2 mg Dilaudid for breakthrough pain
    Temazepam for sleep
    CES orally

    Drugs I have used in the past:
    Elmiron
    Elavil
    Gabapentin
    Vagifem
    Lomotil
    Ativan
    Buscopan
    Demerol
    Flexeril
    Way too many to list!!!!!

    Medical History:
    Have had L4 laminectomy, L4,5 & S1 discectomies, cholecystectomy, appendectomy, gall bladder removed, nasal surgery for accute sinusitis, severe,endometriosis resulting in a total hysterectomy. Also diagnosed with IC, IBS, severe spinal stenosis, severe osteo-arthritis, I wear hearing aids in both ears due to an earlier "abusive marriage". I have Hepatitis C Type 1b, have had this for over 3 decades, this has affected my liver and immune system. Had a blood tranfusion when I was in the Middle East and we think that I got the Hep C at that time.They buy the "blood" there, and as it was so many years ago, they didn't even know the disease existed.I have lost over 60 lbs since my botched hysterectomy where they had to go in again and remove 4 feet of my colon where they had mistakenly stapled it through. I've shrunk from 5'9 to 5'6 because of the osteoporosis. When they first diagnosed me with IC, they found out that my bladder is only 40% the size of a normal bladder, which explains why I have to pee so often, even aside from the IC! I Have had two hydrodistentions, so far, but will need more on a regular basis. We all need to have faith that they will find a cure soon.
    I believe that if we can reduce our stress, learn better ways to cope, we may have a better chance of dealing with this!!!

  • #2
    Hi Curlette;

    So sorry to hear that you are not doing so well !!
    It sure is hard to know what meds or treatments to do as I have been in shoes so many times ..
    I know what you are saying about intercourse as well I had to take an antibiotics before we had intercourse and that seem to help me lots.
    I don't know what to tell you Curlette it is so hard for us all, we are so different in our IC that what may help one may not help the other one..

    I did it all as well I always felt that I was just on way to much medication at times and did not know what meds were helping me..
    I did the InterStim Implant and I am doing really great with this procedure but my battery stop working and I am waiting for it to be replaced with a new InterStim device so I know all about our health system and the waiting game just begin now..
    So far I am surprise that I am doing very well but with lots of frequency again and I knew that would happen as well..

    So I want to wish you a very Happy Valentine's Day and just know that you are not alone in Canada with IC there are lots of us here !!!

    Please hang in there and please take care of yourself to..
    Good luck next week as well..

    Cheers, Debbie
    Thinking positive has got me through to another day!!

    Comment


    • #3
      Dear DebB, Thanks for your help yesterday, just by being there for me. I know how difficult it is for each and every one of us suffering with IC, but I just had pretty well reached my limit yesterday. You are a great moderator and friend and I have met so many wonderful friends on this site, I just don't know what I'd do with out it? Do you ever get that feeling? Nobody understands us, except us, so it's so great that we have a place where we can either be completely crazy together, or logical, depending on how you look at it.
      Thanks again, Honey, for all your help and your compassion to all. I think I must be one of the oldest women in this group, which also makes it a little depressing.
      Have a good day, today, and hope that tomorrow will bring you even brighter days.
      Lots of love & hugs,
      Curlette
      Hugs,
      Curlette

      Drugs I use now:
      HM Contin 12mg twice daily
      2 mg Dilaudid for breakthrough pain
      Temazepam for sleep
      CES orally

      Drugs I have used in the past:
      Elmiron
      Elavil
      Gabapentin
      Vagifem
      Lomotil
      Ativan
      Buscopan
      Demerol
      Flexeril
      Way too many to list!!!!!

      Medical History:
      Have had L4 laminectomy, L4,5 & S1 discectomies, cholecystectomy, appendectomy, gall bladder removed, nasal surgery for accute sinusitis, severe,endometriosis resulting in a total hysterectomy. Also diagnosed with IC, IBS, severe spinal stenosis, severe osteo-arthritis, I wear hearing aids in both ears due to an earlier "abusive marriage". I have Hepatitis C Type 1b, have had this for over 3 decades, this has affected my liver and immune system. Had a blood tranfusion when I was in the Middle East and we think that I got the Hep C at that time.They buy the "blood" there, and as it was so many years ago, they didn't even know the disease existed.I have lost over 60 lbs since my botched hysterectomy where they had to go in again and remove 4 feet of my colon where they had mistakenly stapled it through. I've shrunk from 5'9 to 5'6 because of the osteoporosis. When they first diagnosed me with IC, they found out that my bladder is only 40% the size of a normal bladder, which explains why I have to pee so often, even aside from the IC! I Have had two hydrodistentions, so far, but will need more on a regular basis. We all need to have faith that they will find a cure soon.
      I believe that if we can reduce our stress, learn better ways to cope, we may have a better chance of dealing with this!!!

      Comment


      • #4
        Hi curlette;

        You are so sweet thank you for your kind words..
        The answer is yes curlette I feel that we know each other much better as we are dealing all with the same thing..
        It is lots of conform to know that others are here for you and just know how you are feeling too..
        curlette, you are not the oldest person on here there lot of ages with IC , so don't feel that you are old on here.

        You have a wonderful week and if you need to vent I am here to listen I am a good listen curlette !!

        Hugs, Debbie
        Thinking positive has got me through to another day!!

        Comment


        • #5
          private message sent

          Curlette, I received your private message and sent a reply. I hope you got it. It's the first time I used that system. If you didn't, let me know and I will repeat my information about the hydro I had--piece of cake.

          Comment


          • #6
            THE HYDRO DID NOT WORK FOR ME BUT THE 12 DMSO TREATMENTS ALONG WITH PERCOCET, CELOBREX, NEURONTIN, ZANAFLEX AND TENS UNIT DID

            I WILL BE IN REMISSION FOR A YEAR IN MAY

            PERHAPS THE ABOVE COMBINATION WILL WORK FOR YOU


            MARY
            NEW YORK YANKEES ROCK THE HOUSE. 26 WORLD SERIES CHAMPIONSHIPS, THE MOST EVER\

            GO YANKEES
            :woohoo: :woohoo:

            Comment


            • #7
              Thanks for your help and will keep you posted as to how it goes. Nice to hear of someone who is having some relief, finally.
              Thanks, Curlette
              Hugs,
              Curlette

              Drugs I use now:
              HM Contin 12mg twice daily
              2 mg Dilaudid for breakthrough pain
              Temazepam for sleep
              CES orally

              Drugs I have used in the past:
              Elmiron
              Elavil
              Gabapentin
              Vagifem
              Lomotil
              Ativan
              Buscopan
              Demerol
              Flexeril
              Way too many to list!!!!!

              Medical History:
              Have had L4 laminectomy, L4,5 & S1 discectomies, cholecystectomy, appendectomy, gall bladder removed, nasal surgery for accute sinusitis, severe,endometriosis resulting in a total hysterectomy. Also diagnosed with IC, IBS, severe spinal stenosis, severe osteo-arthritis, I wear hearing aids in both ears due to an earlier "abusive marriage". I have Hepatitis C Type 1b, have had this for over 3 decades, this has affected my liver and immune system. Had a blood tranfusion when I was in the Middle East and we think that I got the Hep C at that time.They buy the "blood" there, and as it was so many years ago, they didn't even know the disease existed.I have lost over 60 lbs since my botched hysterectomy where they had to go in again and remove 4 feet of my colon where they had mistakenly stapled it through. I've shrunk from 5'9 to 5'6 because of the osteoporosis. When they first diagnosed me with IC, they found out that my bladder is only 40% the size of a normal bladder, which explains why I have to pee so often, even aside from the IC! I Have had two hydrodistentions, so far, but will need more on a regular basis. We all need to have faith that they will find a cure soon.
              I believe that if we can reduce our stress, learn better ways to cope, we may have a better chance of dealing with this!!!

              Comment

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