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  • So Frustrated and In So Much Pain!

    Hello all!
    Well, I finally had my first cystoscopy with hydro and biopsy yesterday, in the hospital. I am so upset though, one because I am in quite possibly... the WORST pain that I have ever been in my whole life; and two, my doctor said that he didn't see any current cuts/bleeding/lacerations. He did say that he saw IC related inflammation, and I am still waiting on results from the biopsy. I am so mad though, because I really do not think that he did a thorough job, I mean... I was having a bad flare yesterday, and I had not had anything to eat or drink since the night before. I woke up from the procedure, crying and screaming from the pain. I was given 4 shots of morphine, but that really didn't help very much, though it never really does. I am home now, still in crucial pain, and I am seeing my primary IC doctor in an hour because she wants me to come in for an emergency instill. I cried to her on the phone last night, because I felt as though I would be labeled as "crazy" because the cysto/hydro didn't show definitive findings. But she reassured me... "You're not crazy! You have IC! The cysto/hydro don't always show it, it depends sometimes on what type of flare you are having."
    Also, this same doctor has done a sono and countless urine tests. She found moderate inflammation all in my bladder, plus she ALWAYS finds bladder skin cells in my urine along with blood.
    I just wanted to be reassured by my fellow IC-ers :-) And I also wanted to see if anyone here has ever had the same problem with a cysto/hydro.
    Thank you everyone :-)
    A Recovering Anorexic, An Interstitial Cystitis Fighter

  • #2
    frustrated and in pain

    Originally posted by BabyPaws1186 View Post
    Hello all!
    Well, I finally had my first cystoscopy with hydro and biopsy yesterday, in the hospital. I am so upset though, one because I am in quite possibly... the WORST pain that I have ever been in my whole life; and two, my doctor said that he didn't see any current cuts/bleeding/lacerations. He did say that he saw IC related inflammation, and I am still waiting on results from the biopsy. I am so mad though, because I really do not think that he did a thorough job, I mean... I was having a bad flare yesterday, and I had not had anything to eat or drink since the night before. I woke up from the procedure, crying and screaming from the pain. I was given 4 shots of morphine, but that really didn't help very much, though it never really does. I am home now, still in crucial pain, and I am seeing my primary IC doctor in an hour because she wants me to come in for an emergency instill. I cried to her on the phone last night, because I felt as though I would be labeled as "crazy" because the cysto/hydro didn't show definitive findings. But she reassured me... "You're not crazy! You have IC! The cysto/hydro don't always show it, it depends sometimes on what type of flare you are having."
    Also, this same doctor has done a sono and countless urine tests. She found moderate inflammation all in my bladder, plus she ALWAYS finds bladder skin cells in my urine along with blood.
    I just wanted to be reassured by my fellow IC-ers :-) And I also wanted to see if anyone here has ever had the same problem with a cysto/hydro.
    Thank you everyone :-)
    Hi,
    I am so sorry you're having all that pain.
    Please don't worry about the cysto not showing all the bleeding or lacerations. My cysto only showed a little tiny bit of bleeding, and only after they distended the bladder all the way. Mostly it showed inflammation, which indicated IC.
    I also was in a lot of pain after my cysto, but it lasted for just a couple of days and then subsided. Hopefully, after your instill, you'll start to feel better. It does sound like your doctor understands and is on top of things, which is wonderful.
    Do you think the flare you were having before the cysto might have PARTLY been from the stress of worrying about the procedure? I hate to ask that because we all get tired of people telling us it's just stress, but sometimes that does play a part in flaring. Also, you mentioned that you hadn't had anything to drink for a while. That can sometimes cause pain too, because the urine becomes more concentrated and more irritating.
    Let us know how you feel after the instills, drink lots of water, use heat and maybe ask your doctor if Azo or one of the other OTC bladder meds might help a little.
    Feel better,
    Laurie

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    • #3
      Thank you so much Laurie :-)
      Honestly, I wasn't really worried about the procedure, I was actually looking forward to it because I was truly hoping for relief. Stress definitely makes it worse though!
      I do have a wonderful doctor, she's so sweet! Her mother has IC so she really empathizes. I actually could not get my instill today, I don't drive (due to my heart) so my dad took me and literally as soon as we pulled up to my doctor's office, I vomited all over myself profusely :-( I cancelled with her and had to go right home. I called the doctor who did my surgery, and he said it's probably a bad reaction to the anesthesia, but I've gone under before (for two colonoscopies and an endoscopy) and I've never gotten ill like this.
      I'm taking something for nausea now though, and unfortunately my instill will have to wait, I'm still bleeding from the procedure as well.
      Ugh, but thank you so much for listening, I hope you are doing well with your IC :-)
      A Recovering Anorexic, An Interstitial Cystitis Fighter

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      • #4
        Is it possible you could have an infection? Do you have a fever?
        Teresa

        We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

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        • #5
          @Snowden1: That's what I was thinking, but I haven't come down with a fever yet, (I rarely come down with them, even when I am deathly ill), and I really hope I don't.
          A Recovering Anorexic, An Interstitial Cystitis Fighter

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          • #6
            For me, the pain from a hydro only lasts a day or two. I hope you're feeling better soon.

            Warm 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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            • #7
              That's good to know! Thank you very much, Donna!
              A Recovering Anorexic, An Interstitial Cystitis Fighter

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              • #8
                Did you get any pain pills to take home with you after the surgery?
                • 27 year old student
                • Had symptoms since I was 5
                • Been on forums since '07, knew I had this since then, received mild treatment without true diagnosis due to anxiety. Diagnosed by symptoms on 4/08/11.
                • Had first horrible flare in 07, bad doctors, had to research IC myself to clue in onto what it was. After following the diet I went into remission.
                • Big flare in 09 due to an untreated bladder infection. Went back into remission in 2012.
                • Symptoms returned 4/1/15. All of my remissions have ended in April-May or September-October. It sounds like a connection to seasonal allergies to me..


                Currently: Continuous Birth Control, vaginal valium (10/6/11), Elmiron (4/08/11), UTA (4/08/11), continuous Trimethoprim for infections (10/6/11), Heating pad, Benedryl, harsh diet

                What I know works: Benedryl, diet, birth control, UTA, valium, ditropan, soma

                What didn't work: Elavil, vistaril (12/22)

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                • #9
                  Yes, I was given a double dose of Percocet. I say "double dose" because I take percocet a few times a week, and the dose in one pill is around 360mg. But the ones they gave me from the hospital are about 650mg, lol. Percocet helps to a point, but the pain is still there :-(
                  A Recovering Anorexic, An Interstitial Cystitis Fighter

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                  • #10
                    You could not possibly be taking 650 mg of percocet....do you mean that is the amount of tylenol in the pills? Generally they have 325mg of tylenol, so yours must have double the amount of tylenol. The oxycodone amount in them is usually either 5, 7.5 or 10mg. I think that must be what you meant.

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                    • #11
                      Also, with the 650mg of Tylenol, make sure you are not taking a lot of those. At one point, I was taking 8 10/325 mg percs per day, but my pain doc recently switched me to pure oxycodone, which contains no acetaminophen. That way, I can take more. If I need extra pain relief, I can take an extra strength tylenol with them, but no more than 6 per day, which would give me 3000 mg of acetaminophen in a day.....my pain doc doesn't even like me to take that much, she likes me to keep it around 2000 mg. Liver damage is a real possibility at amounts higher than 4000mg.

                      Take care, it took me several weeks before I felt better after my hydro....I didn't feel horrible that entire time, just not great. The really bad pain and bleeding lasted for about a week.

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                      • #12
                        Oh my goodness, yes! My bad, I cannot believe I made that mistake! Wow, I need to brush up on my RX reading, lol. But yes, that is what I intended to say!
                        A Recovering Anorexic, An Interstitial Cystitis Fighter

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                        • #13
                          Of course I figured you knew that I just wanted to clarify for others!

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                          • #14
                            Thank you for making me think of that, because I already have some liver problems, my enzymes go up and down. So I will be sure to mention this to my doctor, and thank you for the well wishes :-)
                            I'm still bleeding, and my retention is easing up slightly, but my god... I'm urinating more than ever, and it is more painful than ever to urinate every time. Arghh!
                            A Recovering Anorexic, An Interstitial Cystitis Fighter

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