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  • Starting to feel very angry

    Is it just me, or has anyone else found their symptoms got much worse after getting the rigid cytoscopy under anasthetic? I did, and I feel so upset and angry about it.
    I wish they had a less invasive method of diagnosis. Afterwards I started bleeding and passing clots and although it cleared up with an antibiotic, my bladder has never been the same since....surely introducing more instruments and trauma to an inflammed bladder can't be wise??
    I know it's not right to feel angry, but sometimes I can't help it. I desperately needed help and relief, and now I am worse than ever before. Arrgggghhhhhhh!!!!!!!
    Up at 1am writing this, up and down at loo like a yo-yo, feeling like you know what.

    Jem

    Sorry for ranting, but I had to offload. Some days I cope better than others, you know?

  • #2
    I'm so sorry I too had issues after my cysto/hydro and wish to God I had never submitted to that. I agree--much too much trauma for and already fragile bladder. I will tell you that eventually after some months had passed my symptoms returned to the pre-surgery level and I hope that yours do, too.
    Keep us posted.

    Comment


    • #3
      Hi Jem. I completely understand how you feel. I had a hydro last Tuesday and I'm still suffering. If anything, I am worse than I was before. I have urgency all day long and some pain that comes and goes. I'm hoping and praying that all of this will improve in the next week. Today is one week since I had it done and I'm not feeling too confident at the moment. I've done a lot of reading and it seems that everyone is different. Some people feel immediate relief, others in a few days, and then others who take weeks or months to recover. Try to give it some time, watch your diet, drink nothing but water, and take any meds that help. I understand your feeling of anger as I'm upset with myself right now for going through with it. What I had before is better than this but I'm still hoping for better days ahead.

      Comment


      • #4
        Thanks Bri



        Thanks so much for replying, and for offerring me some support. If my bladder could get back to 'pre-surgery level' I would be so relieved and happy. At least before the cytoscopy I was managing to cope with my symptoms. Now I can barely cope at all...It seems like such a horrible irony...
        To make matters worse, the first treatment I have tried has also continued to worsen my symptoms.
        Anyway, I'm so glad you're in remission and maybe I should ask my doctor about the licodaine patches....I'm about to start amitriptyline and hopefully phyiscal therapy, so will have to wait and see.

        Thanks Bri.

        Comment


        • #5
          My urologist did not do the hydrodistention, just went by my symptoms, urine culture, and a regular cystoscopy in his office. I am so sorry to hear the pain you're in and hope it gets better soon. I, too, am waiting to hear on PT.
          Pam



          Diagnosed with:
          IC September 2009 (symptoms are frequency all the time and some burning)
          Graves' Disease June 2006 (thyroid issue)
          Sleep Apnea February 2007
          IBS-C so long ago I can't remember
          HBP
          Total hysterectomy 2015 (pre-cancer)
          Meds/Treatments:
          CPAP Machine (for sleep apnea)
          Uribel
          Metoprolol ER
          Synthroid
          Linzess and Magnesium for IBS-C

          Love my furbaby, Turtle!

          Comment


          • #6
            Jllsja

            Originally posted by jllsja View Post
            Hi Jem. I completely understand how you feel. I had a hydro last Tuesday and I'm still suffering. If anything, I am worse than I was before. I have urgency all day long and some pain that comes and goes. I'm hoping and praying that all of this will improve in the next week. Today is one week since I had it done and I'm not feeling too confident at the moment. I've done a lot of reading and it seems that everyone is different. Some people feel immediate relief, others in a few days, and then others who take weeks or months to recover. Try to give it some time, watch your diet, drink nothing but water, and take any meds that help. I understand your feeling of anger as I'm upset with myself right now for going through with it. What I had before is better than this but I'm still hoping for better days ahead.
            Hey Jllsja,

            Thanks for your reply. Like you, I did a lot of reading too. I had high hopes that I would be one of the people who felt immediate relief. When I got an infection and blood clots etc, I thought 'just my luck.'
            I can only hope that we will both eventually get back to a 'pre-surgery level', like Bri managed to.
            I think maybe you should go to see your General Practitioner or 'Out of Hours Emergency' at the hospital if you haven't already. (Apologies if I am using the wrong terms - I am in Britain) Get tested to see if you have a urine infection or blood in your urine. There can be traces of blood in your urine, even if it isn't noticeable to your eye. (That's what I did.) If you do, they can give you anti-biotics or more anti-inflammatory drugs, and perhaps refer you back to your urologist. I had to take 2 courses of antibiotcs before the blood finally went. If you leave it, it might get worse.

            Luv and hugs,

            Jem x
            Last edited by Jem; 12-21-2010, 02:01 PM.

            Comment


            • #7
              Pam

              Originally posted by Turtlecat View Post
              My urologist did not do the hydrodistention, just went by my symptoms, urine culture, and a regular cystoscopy in his office. I am so sorry to hear the pain you're in and hope it gets better soon. I, too, am waiting to hear on PT.
              Thanks Pam,

              I wish so much that I had a doctor like yours. The reason I had to get the hydro is because he didn't believe there was anything wrong with me. It was truly the ONLY way he would believe me and give me a diagnosis.
              Despite all of my symptoms and the fact that all other possible conditions had been ruled out, he never once considered that I might have I.C, and wasn't willing to diagnose me. It was ME who told him I was sure that I had it! I had to get the hydro done in order to prove to him that I was not making it all up. Unfortunately, because I have depression/anxiety, he assumed it was all in my head. Sigh. What a carry on!!

              Jem x

              Comment


              • #8
                Just to give you a little hope...I had the same procedure and was really bad for about 10 days. Then I started going back to my pre-surg level. I hope your feeling better really soon. But if the blood clots don't stop, you really need to go back to your doctor or the ER, if necessary. I had blood and small clots for about 2-3 days. Good luck!!
                Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                Lexapro-20 mg
                Aciphex
                Ambien-as needed
                Percocet-7.5 up to 3 per day as needed
                Valium-10 mg x2 per day
                Phenergan-1 at night
                Prelief w/everything
                Now recovering from acute pancreatitis

                Currents treatments that help somewhat:
                Heating pad
                Hot baths
                Ice
                Being VERY still while lying down with legs elevated

                Comment


                • #9
                  I hope you feel better very soon.

                  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


                  • #10
                    Thanks so much Donna. It means so much to have the support of the wonderful people on this forum, and to be able to talk to you all. I appreciate it so much. Thanks to everyone.

                    Comment


                    • #11
                      After my cystocopy precedure I really did'nt feel that much difference before and after just a little blood and very very very mild discomfort. But every icer is different but you claim you dont care for your uro i would strongly suggest you find a more understanding and sincere uro. I wish you the best.
                      <center>
                      <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
                      </center>

                      Comment


                      • #12
                        Linda May

                        Originally posted by Linda May View Post
                        After my cystocopy precedure I really did'nt feel that much difference before and after just a little blood and very very very mild discomfort. But every icer is different but you claim you dont care for your uro i would strongly suggest you find a more understanding and sincere uro. I wish you the best.
                        Yes, it's true I don't have much confidence in him - but because I am an NHS patient, I have to see the doctor assigned to me and do not get to choose!
                        I have thought about 'going private' but I would have to borrow money from my parents to do that, as I am currently on incapacity benefit.
                        I'm afraid I will have to continue with my current doctor...but if the next treatment he tries doesn't work, I will have to reconsider my options. Thanks for your advice Linda.

                        Jem

                        Comment


                        • #13
                          Originally posted by Jem View Post
                          Hey Jllsja,

                          Thanks for your reply. Like you, I did a lot of reading too. I had high hopes that I would be one of the people who felt immediate relief. When I got an infection and blood clots etc, I thought 'just my luck.'
                          I can only hope that we will both eventually get back to a 'pre-surgery level', like Bri managed to.
                          I think maybe you should go to see your General Practitioner or 'Out of Hours Emergency' at the hospital if you haven't already. (Apologies if I am using the wrong terms - I am in Britain) Get tested to see if you have a urine infection or blood in your urine. There can be traces of blood in your urine, even if it isn't noticeable to your eye. (That's what I did.) If you do, they can give you anti-biotics or more anti-inflammatory drugs, and perhaps refer you back to your urologist. I had to take 2 courses of antibiotcs before the blood finally went. If you leave it, it might get worse.

                          Luv and hugs,

                          Jem x
                          Thanks Jem for your words of encouragement. I did call my urologist yesterday and asked for an antibiotic. I used a home UTI test and it came back a "trace". I didn't want to get stranded over the holidays with my doctor out of the office. Going to test my urine again in the morning and see if the infection is still present. If so, I will start the antibiotic (they did call it in for me). Very frustrated right now with all this burning and urgency.

                          Comment


                          • #14
                            Your welcome Jllsja,

                            I'm just glad I was some help. It's even more frustrating when these things happen at Xmas time, isn't it? I'm pretty sure things will get better for you once you have completed the antibiotics. Lets me know how it goes, okay?

                            Will be thinking of you!

                            Jem x

                            Comment


                            • #15
                              I'm a little late/behind but want to add that I am always much worse after a hydro - usually for about 10 days - two weeks. I am in bed for at least 3-4 days after. USually head back to work after day 6 or 7. But once I get over the initial hump I do see improvements in my symptoms. Hang in there and I hope you feel better soon
                              Jan

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