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Just diagnosed. In denial

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  • Just diagnosed. In denial

    Hi there, I have recently been told I have IC. I had a total abdominal hysterectomy about 12 weeks ago. It was pretty envasive, they took everything except for my left ovary. I had quote a lot of scar tissue build up from a previous surgery and endometriosis. My rt ovar was fused to my bowel. When I came out of surgery and they took out the catheter I had trouble going pee. I had to be Cathed and re-Cathed finally things began to move correctly. Fast forward 6 weeks when I went back to work I had pain whenever I urinated. I had the pain before and my gyno ruled out uti. We chalked it up to healing pain and it had subsided.
    When it came back after 6 weeks I was told to go to the er. And then was sent to my current uro doc. She did a ct scan and a cystoscope. So now that everything looks good I am basically told that I have this condition because nothing else was found.
    I'm not reply sure I want to accept that. But I don't know where else to turn. The pain is in my belly as I empty my bladder. It feels as if it is pulling on something as I empty my bladder.
    I was given amatriptaline and tramadol for now, I am also still taking urostat blue 4 times a day. Basically the only time I have relief is after I take the tramadol, which isn't long since I fall asleep soon after.

    Has anyone else gone through the denial phase? And as for the diet, if I cut an item out how soon should I see relief? I am hating skipping my daily soda unless it will really help.

    Thanks in advance for the help.
    Jennifer

  • #2
    I want to give you a welcome first of all. That does not have to mean I am thankful to know another person was diagnosefd with IC. Regardless, I am a male, by the way. I was still diagnosed with IC back in 1997. OK. None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! I don't know everything about a total abdominal hysterectomy, but I do know an IC diagnoses can be made because nothing else was found to be wrong.(or to be causing the symptoms)It can be hard to accept that you have been told you have got a chronic illness with no known cause and no known cure. Come on. I felt lost at first. There was not as much information out about IC back then. OK. I did not have a computer to use until later on. Oh! I had never heard of IC before. Some people do get another opion. By the way, you may have to give up soda after all. I did drink some root beer without caffeine a little bit ago. I don't seem to have a problems with it.(which others have said the same thing before) OK. We all know IC just plain sucks. Yep!

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    • #3
      I also developed IC during the recovery from an abdominal hysterectomy.

      Diet can be important --- I suggest you give it a try for a month or two to see if it helps. Some of us can have root beer --- I know I can, but the Pepsi I used to love is out of the question for me.

      Sending welcoming hugs,
      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]

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      • #4
        I was also in denial for a while. I was diagnosed in Dec. 2010. I never heard of IC, and had no pain in my bladder, so I didn't even know anything was wrong. My doctor said the nerves in my bladder are damaged, which was one of the reasons I didn't have pain. Well, slight discomfort and pain have started, and my denial has gone out the window. I learned a lot from just reading this site, but still have a lot more questions. I just want to let you know you're not alone in the feeling of denial.

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        • #5
          hey, I still am in denial sometimes, and then I flare and the denial goes out the window.... Sometimes im not really sure whats wrong, but yeah I chalked it up to being IC even without a diagnois. Baseclly I was told I have it because I didnt have anything else. They are prob right but I still dont wanna accept it sometimes! lol....... What I did accept though was the diet. Not only is it a healthy way to eat to begin with, it helped ALOT when I first was having trouble. I stick to it well most often, and once in awhile ill add something to see if I react. The longer your on it the better you feel because for whatever reason YOUR BLADDER IS INFLAMMED, so the only way to let it rest is to watch what you put in to it.

          PLEASE, don't drink pop. Honestly it is one of the worst things for your body not to mention your bladder. I would give it up today asap, and after 6 months to a year I might have a glass... I hated pop to begin with so it was never hard for me, but I can tell you it will make a difference to leave it behind.

          Also, even though I have had some really rough crap the last little while, I have felt MUCH MUCH better than when this all started. Partly to Elmiron (I think) and partly the diet for sure! SO it does get better, just might take awhile! This morning I slept in till NOON (which never happends) only peeing once at 8:30 am. I got up took a HOT shower, ate some amazing plain potatoe chips and a pear for breakfast, and now I am back in bed and I feel great! (its my day off today so I am being lazy )

          When you look at the diet look at it as though your helping your body. Dont think of it as some horrible food elimination, because it really isnt. There is TONS on the list we can eat!

          Good luck

          Jenn
          28 yrs old,

          I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

          What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

          Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



          Me in my graduation gown!

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