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  • Procedures that Haunt you...

    Hello this is very weird, but im choosing to share it with you. I had a terrible experince with a cystoscopy back in January. For the past few nights I have been thinking about it before I go to bed and it makes me cry. I would almost describe it as feeling sorry for myself for having to go through that. I also can picture very clearly the operating room and my doctor, and I remeber the pain vividly. I didn't feel this way right after, I was releved that I finally had proof. This is very bothersome, and makes me scared because my meds aren't working and I know I will need more procedures to get proper treatment. Any advice? Has this ever happened to you?

    Thanks
    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

  • #2
    Hey there, it almost sounds like post-traumatic stress stuff to me. I know in the beginning right around diagnosis for me, I was very very sensitive to things - loud noises made me yelp every time, couldn't handle being in an area where it was loud with any type of noise (music, etc). It didn't take much to make me react. And if you are now feeling these kinds of effects, and were fine when it actually happened, I think I'd definitely mention it to my doctor!!! It's got to be horrible to deal with I am sure!

    Hope you get some relief from it soon!

    BIG hugs!
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    IC Diet Cheat Sheet:
    http://www.ic-network.com/diet/2009icdietlist.pdf



    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

    Comment


    • #3
      I had a couple REALLY bad experiences in the beginning and it took me years to get over it. I actually would even feel faint at just the thought of it having been done to me. I finally got over it when I went to my new uro and had to have the same procedure done. I didn't think I could even make it to the appointment I was so nervous, but she knew my problem-and terror, and made it as painless as possible, and now I'm not so scared. I'd let your uro know your fears, just having them understand can make it so much better.
      Leah

      Comment


      • #4
        Tracey is right. I do suggest you mention this to your doctor. I remember when I was first diagnosed, there were times when I broke down in tears at the drop of a hat.

        Sending gentle 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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        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


        • #5
          I agree with the others... mention this to your doctor.
          ****
          Jen

          *Diagnosed with severe IC in 2004
          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

          **I am not a medical authority nor do I offer definitive medical advice. 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.

          Comment


          • #6
            I was surprised when I did a search on Post Traumatic Stress Disorder because of one of our members experiences and discovered that I indeed seem to have some of the symptoms of it. It is because of the amount of pain from IC that I had in the beginning. There is a thing called traumatic memory. It can cause deliberate effort to avoid thoughts or feelings about the traumatic event and to avoid activities or situations which may remind you of the event.

            Please, do talk with your doctor about this. If your doctor ignores you, find a councilor who understands PTSD. (((hugs)))
            Sharon

            Shopping??? Did someone mention shopping? I'll get my hat... ;-)

            Where I can be found most days.



            Link to the ICN Patient Handbook:
            http://www.ic-network.com/handbook/

            Link to the IC Diet:
            http://www.ic-network.com/diet/


            IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Comment


            • #7
              Thanks for all the advice ladies! I will talk to my uro, although im freaking out about my appointment on the 15th because no meds seem to be working. Im really scared something more invasive needs to be done. I just need to tell myself that its for my own good and it will make me better. Ill keep you guys posted. Thanks again!

              Erika
              IC diagnosed officially via cysto/urodynamics 1/26/07

              Grade II Endometriosis diagnosed via lap 12/11/07

              "Fall down seven times, Stand up eight."

              "Life is a tragedy for those who feel and a comedy for those who think."

              Current Treatments:
              Interstim Since 5/25/07!
              Birth Control

              Comment


              • #8
                Oh you're welcome Erika! Don't forget stress can be a HUGE bladder aggrivator too, so try to keep that under the best control you can, and darn, it involves lots of pampering,
                Hugs,
                Tracey
                How do you eat an elephant? One bite at a time...

                Harry arrived 2/23/09!



                *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                IC Diet Cheat Sheet:
                http://www.ic-network.com/diet/2009icdietlist.pdf



                Dx's:
                IC dx'd Nov 2004
                Lymphocytic Colitis dx'd July 2005
                Possible IBS
                Current IC Meds
                Vistaril 25mg in the evening
                Previous IC Meds taken:
                Cystoprotek - 2 caps 2x's a day
                Elmiron, 100mg 3x's a day
                Ditropan, 5 mg 3x's a day
                Others:
                Wellbutrin 150mg 2x's a day for Anxiety/IBS
                Pepcid 40mg a day for GERD
                Zytrec for Nasal Allergies
                Align Probiotic daily for IBS

                Comment


                • #9
                  I feel scared all the time with IC. I get all nerved out when I have a flare which I know doesn't help. I had a bad experience being cath'd back in January so when my uro suggested instillations I freaked out. I was crying before she even did anything. She did such a good job, though, that I really didn't feel much of anything. The tests that have to be done with this condition can be horrible so give yourself a break. I am at the point, now, where I think I want to go talk to someone to help me through the anxiety. I am trying to get pregnant so I can't take any anti-anxiety meds at this point. Good luck and hang in there!
                  Kim

                  Comment


                  • #10
                    I go through the same thing. It is an awful weird feeling huh? I won't listen to any medical information on the radio or watch it on tv. I very seldom ever watch the news. I start sweating and panicing if I do. The worse for me was the colonoscopy which I will never ever do again. I managed to finally put it in the back of my mind so I won't remember. It took me about a year to be able to do that. Like the others said I would mention it to your Uro so he knows how you felt and what you are mentally going through from it. Might help to talk to him over it if you need to have something else done. I never worried when my Uro was in the room. When he left I would start freaking out. Hope you get to start feeling better over it.

                    Comment


                    • #11
                      For some reason, the last few days, I have felt some nebulous anxiety. My hands are shaking and I have 'butterflies' in the pit of my stomach. For awhile this weekend, I got rid of it, but it's back again. There are so many things going on in my life that I have to sort out which if any of them are causing the discomfort.
                      I have a uro appt. on Tuesday to discuss bladder removal. I'm packing, because I'm moving - actually in a few months, but I have to tie up lose ends at work as well as getting the house ready. Saying goodbye to a lot of people is going to be so hard. I am still grieving my sister's death. Her children have been in contact with me through email and they are hurting. I try to comfort them and let them know I am here for them. What great kids! I've decided to find a therapist around here, even if it's just for a short term.
                      I started Yoga this morning. I found a cd that starts you in the morning with 15 minutes of stretching before you even get out of bed. Lots of breathing techniques. Tried it theis morning and it was great.
                      Hang in there. Anxiety that has no recognizable roots is a bear. Anxiety with a recognizable source is a bear. Trying to avoid the things that cause us to be unsettling is a good thing to an extent. I don't want those things to pile up until I am paralyzed.

                      Comment


                      • #12
                        I am still freaked out about my cytscopy which was about a year ago. I was awake for it. I tried to be strong thru it and afterwards. When I look back, I probably shouldve went to the emergency room or back to my doctor because I was in so much pain. I had to drive myself 45 minutes home after the apt. He didnt tell me it would hurt or that I would probably need someone to drive me home. I remember being done with the apt and then having extreme urgency and pain right after the procedure. During the exam I told him my pain was ranging from 7-10, but he didnt give my bladder any meds when he was done. I just kept thinking I was being a wimp about it.

                        That 45 minute drive home was the longest drive ever. I went as fast as I could safely go. My fiance called me on my way home. When he called I started crying. He asked if I was ok, I said no. When I got home, he had a heating pad and some tylenol ready for me.Now I realize that I probably shouldve been put under during the exam or at least had some pain meds instilled into my bladder, but I just went home and collapsed into a deep sleep.

                        After reading up on procedures on here and seeing what everyone else went thru, I realized that I wasnt a wimp, and that I shouldve demanded that he do something to help with the pain after the apt. Now, I know what to expect at my apts and its all because of you guys.

                        I hope that you get passed your experience soon! Im getting over it little by little, day by day.
                        Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

                        I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

                        Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

                        I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

                        Comment


                        • #13
                          Painful memories...memories of pain

                          Someone on this site posted a quote from a popular medical drama (my fav), "House". The quote is something like this "The fear of pain is almost as bad as the pain itself". Most all of us have had experiences where you hear that phrase "This will just 'sting' a little", or "You'll just feel a little pressure", when 2 seconds later, you end up screaming in pain. Why do the doctors and nurses even say anything!! It makes me so mad. Someone checked my blood gases once and I completely passed out from the pain. I will NEVER forget the pain of that. My last appt. with my former Urologist just drove home the fact that a huge amount of healthcare providers don't understand pain. He had done a cysto and hydrodistention on me a few years ago WITH sedation in the hospital because he also wanted to biposy some tissue in my bladder. It was so painful afterwards, even taking pain medications and still having remaining pain meds in my system from the surgery....but I got through it. The last appt. I had with him, he said another distention would probably help me feel better, but he wanted to do it in his office because it wouldn't take but a few minutes and I could deal with the pain for that short amount of time. WHAT???? I told him, no way....and told him it was painful even with anesthesia and pain meds. They just don't understand....and I dont' know why. I can't be the first one to say this to him. I am blessed that my UroGyn I have now FULLY understands how painful all of this is. Anyway, I'll never forget him casually telling me how because it was a short procedure, I could deal with the pain. I don't go there anymore......only good to come out of it is that he referred me to where I go now for instillations!
                          Dani


                          -Bladder surgery to correct reflux-'68
                          -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                          -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                          -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                          -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                          PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                          -DX'd with IBS in 2000
                          -Rhabdomyolysis in 2001 (has not returned)
                          -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                          -DX'd with TMJ in 2000-wear splint
                          -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                          -DX'd with Epilepsy -2000
                          -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                          -DX'd with Fibromyalgia (2006)

                          Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                          Comment


                          • #14
                            Oh how I relate. I had ic back in the day of urethra dilations in the dr's office. I had cystos in the dark basement of my college health center. I found dmso installations to just be more trauma. It took years for me to think of my crotch as anything but a painful place. It was hard on my marriage!! I was in remission for over 12 years until last month. A new illness probably weakend my body and the ic returned. I was out of my mind with a burning pain but kept going to the gyn saying it must be a vaginal infection. Two weeks later it was go to the er for pain meds or just call the uro from all those years ago. He examined me and said I was in a flare. I burst into to tears. The trauma and the pain and the stress of the dx time in my life was more than I could bear. You are totally normal to be stressed and sad about this. I had a hysterectomy two years ago and I would often cry just thinking about the trauma of surgery and the time spent healing. I think you need to pamper yourself and know that you are justified to feel such feelings. I am actually seeing a counselor because I just can't go down this road again without working out some of the terrible memories. Talk to your friends, call your dr, don't suffer or be sad alone. Hugs to all!

                            Comment


                            • #15
                              Runningshoe-I was so interested in your post because you said that you had been in remission for 12 years. I was diagnosed with IC about 8 years ago and my only symptom was painful intercourse. I had several DMSO treatments and then was fine. I had no other symtoms until this past December when I started going to the bathroom every 5 minutes. The first uro I saw told me that there was no way I could have IC because it doesn't go into remission for that long. He finally did do a cystoscopy and discovered that I did have it. I am now with a new doc who is fabulous. Like you, I haev a lot of anxiety with this condition. I am going to check into seeing a counselor to help me through it because I cannot take any anti-anxiety meds because I'm trying to get PG. Good luck to you!
                              Kim

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