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  1. #1
    Registered User ibtracy's Avatar
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    Unhappy I'm scheduled for a bladder scope WHILE BE AWAKE AND AM SCARED TO DEATH...

    I am so scared and worked up about this, it isn't funny! Especially after reading some other postings.

    My urologist/IC Specialist has ordered a bladder scope on Sept. 24th and is having a bladder specialist that has seen the worst of the worst to assist him with my case. They're primarily looking for any reason why I'm retaining so much. The last case of retention was 1,250 cc of urine in my bladder and I was so swollen it wasn't funny. My bladder prolapsed into my vagina 2 years ago and they're wondering if the bladder prolapse repair is pulled up to tight or maybe even done incorrectly. Depending on what they find or determine I will be having a 2nd surgery on October 6th but luckily this surgery will be with anesthesia. I've never had a scope done without being put to sleep and generally speaking am in pain 24/7 all the time so I know this is going to be extremely uncomfortable for me - in addition I have a 90 mile drive to get there and then a 90 mile drive after the procedure so I know deep in my heart this isn't going to be a "fun" experience. I've already requested they send me home with a foley catheter for 24-48 hours because any time in the past they've messed around in there I can't pee afterwards so I hope they'll honor my request. My uro assured me we'd part as friends after this and it won't be as horrible as I'm picturing. But this urologist is also one that doesn't believe in long term narcotic pain therapy either. The last time I called and requested pain meds he said he wouldn't refill them for a year. I already made sure that he would treat my pain while I'm there directly following the procedure as well as pain meds for my recovery from the scope. This might not be a BIG thing for him but he doesn't have IC and chronic bladder pain either...

    I have to believe that it will all be okay!
    Love from far away,
    Tracy K

    Current & Past Health Diagnosis(s)
    Currently suffering from 2nd Bladder Prolapse
    Interstitial Cystitis- March 2004
    Fibromyalgia 2004
    Chronic Fatigue Syndrome 2005
    Severe Pelvic Floor Dysfunction
    Irritable Bowel Syndrome
    Tension & Migraine Headaches
    Chronic/Severe Urinary Retention
    Numerous Endometriosis/Adhesions Removal Surgeries
    Pelvic Organ Prolapses (Uterus/Vaginal Walls, Bladder, & Rectum)
    Partial Hysterectomy 1997
    Ovaries Removed due to large cysts 1998
    Chronic UTI's (ongoing)
    Medtronic Interstim Unit removed after 5 months due to severe infection and unit was floating around in my lower back 2004

    Never be ashamed to ask for help when you need it.

    God will never give me more than I can handle, but sometimes I wonder if he lost track of what's he's dealt out here ???? I'm trying here

  2. #2
    Forum Manager ICNDonna's Avatar
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    Having a cystoscopy is about the same as being catheterized. I find that it really helps me if I concentrate on relaxing --- the more tense I am, the more it hurts --- and if I relax, it's not too bad.

    I just hope they'll find some answers.

    Warm encouraging hugs,
    Donna
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  3. #3
    Registered User ibtracy's Avatar
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    Talking Thanks Donna

    Donna;
    I've always been a really nervous person and would of been better off not knowing about this ahead of time but I thank you for your advice. I will do my best to try and relax and hope for the best. I appreciate your reply!
    Love from far away,
    Tracy K

    Current & Past Health Diagnosis(s)
    Currently suffering from 2nd Bladder Prolapse
    Interstitial Cystitis- March 2004
    Fibromyalgia 2004
    Chronic Fatigue Syndrome 2005
    Severe Pelvic Floor Dysfunction
    Irritable Bowel Syndrome
    Tension & Migraine Headaches
    Chronic/Severe Urinary Retention
    Numerous Endometriosis/Adhesions Removal Surgeries
    Pelvic Organ Prolapses (Uterus/Vaginal Walls, Bladder, & Rectum)
    Partial Hysterectomy 1997
    Ovaries Removed due to large cysts 1998
    Chronic UTI's (ongoing)
    Medtronic Interstim Unit removed after 5 months due to severe infection and unit was floating around in my lower back 2004

    Never be ashamed to ask for help when you need it.

    God will never give me more than I can handle, but sometimes I wonder if he lost track of what's he's dealt out here ???? I'm trying here

  4. #4
    ICN Member ICLori's Avatar
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    Hi, IBTracy, I had an in-office cystoscopy and it really truly wasn't bad. It felt a bit funny/irritating when the cystoscope went in - like a catheter - and then I had an urge to void as the bladder filled up a bit with water, but other than that, no big deal at all, not as painful as a regular gyn exam is these days for me since I got IC.

    Honestly I think you will look back after the procedure and say "oh, I was so worried about that?" I know it's hard to relax, when you worry that something will hurt, but it sounds like they are using a local and everything so you shouldn't have too much discomfort at all.

    Blessings, Lori

  5. #5
    Registered User lotsofgirls's Avatar
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    Not so bad

    Hi IB Tracy,
    I've had several cystos without anethesia and they are no problem. The only time I need the anethesia is for the hydrodistention. If they are just doing a cysto you will be fine, its just a catheder. The cool thing is you will be able to see your bladder on the TV screen, and it is really something to actually see what is causing all these problems. Good luck,
    Cath
    One day at a time

  6. #6
    ICN Member tigger_gal's Avatar
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    I have had a few in office cystos I never had a problem.. there uncomfortable but not painful.. My very first one showed nothing and
    Brat
    'The will of God will never take you where the Grace of God will not protect you.'

  7. #7
    Support Leader Sarojini's Avatar
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    I've never had an in-office cysto, but I'm wishing you the best of luck and sending you lots of supportive hugs for yours!!
    ****
    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.

  8. #8
    ICN Staff SharonA's Avatar
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    to you. Hope the scope goes well.
    Sharon

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

    Where I can be found most days.



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    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.

  9. #9
    Registered User ibtracy's Avatar
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    Thumbs down They refused 2 of my request and treated me like an idiot!

    The surgery center called to confirm my procedure yesterday and I asked the nurse about a possible epidural or if they could give me something to relax me and the gal said no to both. She asked what my problem was that I was so worried that this would hurt me and I said well, I have IC and to me everything hurts. She went on to say she didn't know what my problem was it was only a 15 minute procedure and that I should just quit worrying about it. I've never felt so dumb for having a severe bladder disease in my life.

    I bet if this woman had IC she'd want something to relax her or have herself be put OUT completely. Nurse or not, she better not end up being my surgery nurse or we're gonna exchange some words!

    Thanks for all your support, I really do appreciate it!
    Love from far away,
    Tracy K

    Current & Past Health Diagnosis(s)
    Currently suffering from 2nd Bladder Prolapse
    Interstitial Cystitis- March 2004
    Fibromyalgia 2004
    Chronic Fatigue Syndrome 2005
    Severe Pelvic Floor Dysfunction
    Irritable Bowel Syndrome
    Tension & Migraine Headaches
    Chronic/Severe Urinary Retention
    Numerous Endometriosis/Adhesions Removal Surgeries
    Pelvic Organ Prolapses (Uterus/Vaginal Walls, Bladder, & Rectum)
    Partial Hysterectomy 1997
    Ovaries Removed due to large cysts 1998
    Chronic UTI's (ongoing)
    Medtronic Interstim Unit removed after 5 months due to severe infection and unit was floating around in my lower back 2004

    Never be ashamed to ask for help when you need it.

    God will never give me more than I can handle, but sometimes I wonder if he lost track of what's he's dealt out here ???? I'm trying here

  10. #10
    ICN Member
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    Scope

    Call the doctor and ask him for a prescription for something to take before the procedure to calm you down. Make sure someone is there to drive you home if you do.

    It is not bad at all. The anxiety is the worse part. I wish the woman that you talked to needs to have something like a scope someday so she understands a little more of what we go through.

    Ginny

  11. #11
    ICN Member tigger_gal's Avatar
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    hugs tracey, I too would call my dr and ask if they could give you something to relax.. or perhaps take a pain pill 30 mins befroe the procdure..... sending you hugs.
    Brat
    'The will of God will never take you where the Grace of God will not protect you.'

  12. #12
    Registered User
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    I had an in office cysto last month and honestly, it was a breeze. I was terrified as well, after reading some of the stories on the site, but it did not hurt.

    The only part that was uncomfortable was when she put the freezing in. I did not feel the scope at ALL, and the whole thing was over and done with in just a few minutes.

    I really tried to relax, tense muscles make everything worse. Good luck

  13. #13
    Registered User XoChelsey03Xo's Avatar
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    I don't think I could go through with a cysto while being awake. I'm lucky that my mom is a RN and works with all the dr. I have a really good uro. I hope that your uro doesn't hurt you too much. Chelsey

  14. #14
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    Make sure they use topical lidocaine for the cysto too. (I think it is standard procedure to use it). If your IC doctor wont' perscribe something for your anxiety maybe your regular doctor would. Even something like ativan or valium would help. Definately take a pain pill prior to the prosedure (remember to give it enough time ot work...app 15-30mins.) Make sure you have someone to drive you home even if you don't get/take anything to relax you. By the time it rolls around to your apppointment you will be pretty nervous. I've had 10+ surgeries but since I had never had a distension before I stayed up all night worrying too. By the time it is over you will be hung out to dry so to speak.

    I wish I could guarentee that you won't have anything ot worry about. It tends to be a moot point no matter how many people tell you it's a breeze It is always a good "told you" so kinda thing. Although I always tell my patients the truth about how much certain procedures CAN hurt. Then when they are done and say hey it wasn't as bad as I thought you feel better then if you tell em it is pain free and they cann't tolerate it.

    As for the pain med issue I can not believe how a doctor that does not have IC nor any idea how painfull it is can say you don't need narcotic pain relief. It's not even the point that many IC patients do not have pain that requires narcotics usage long term. The issue for you right now is the accute pain (sounds bad but I really mean the pain that is during and directly following the procedure not the everyday chronic pain you have to live with.) PAIN IS WHAT THE PATIENT SAYS IT IS PERIOD!!! What if they find out that you bladder is one huge bleeding and inflammed mess. That's what they found with mine which holds 1200cc too. She even said that a big part of the problem was that having the bladder streach to such a large size meant that there was much more surface area to be screwed up and effected areas. It also meant instead of having a small bladder that holds 300cc and is the size of a grapefruit full, I have one the size of a cantelope producing more mast cells, more irritated nerves taking up and crowding lower abdomen more and more area to hold/retain more urine to bother the more surface area so the more pain stops you from emptying out the bladder with an increase risk of infection, with more damage from the larger amount of more retained urine........It is an awful cycle that they don't even see how it affects you. (Believe it or not my doctor was the one to explain the cycle to me so I would realize how bad not treating my other problems can snowball to he!!). You can see it...I can see it maybe you should copy this out and give it to them with the word MORE highlighted.
    The other thing regarding the pain meds is that you need to talk to your urologist about having pain medicine on hand. Let him know that you understand HIS feelings on narcotics for pain but that you disagree with it. Tell him you WILL be contacting your internal med/family doctor for better pain control if he refuses to supply you with adequate pain control. This is important that you tell him you will be so he doesn't think you are "drug seeking" and going behind his back. That may be enough to spur him into action and if it is and he asks what you want then you need to copy out some of the information from this forum on how painfull IC is and some of the treatment options for pain control not just frequency burning etc. If he doesn't you have tried (keep documentation by writting down results or notes while he talks.) The next step would be to contact you family med doc with this info as well of your urologists decision on pain medications. If he sides with your uro take notes then ask for a refferal to a pain clinic and bring it all to them.

    IF they are not helpfull ask for a second opinion or third or whatever it takes to get adequate pain control. If you have a pain score of 8/10 and feel okay with that able to function and what not fine....If you have a pain score of 2 and can not handle it then it needs to be treated. Not only is pain control every patients right but it is also what the patient can tolerate not what the doctor can tolerate. I would personally be rather nasty and tell the doctor that I do not believe it is up to him to tell me what MY pain score is and I am the one living with it not him.....IF you expected every last bit of pain to be eliminated it would be unrealistic and I could see the doctors putting limitson pain meds if you were snowed and sleeping etc. I also expect my patients to tell the truth not put on an act just to get drugs. The thing is with IC there is a very physical reason for pain with terrible consequences for not treating it...Lack of sleep, being one of the first complications, retention from pain and so on. If I even thought it would do any good I'd write your uro a letter on pain, pain control and his negligence in treating you.... My perspective would be from a Pain Clinic RN as well as fellow sufferer.
    One last thing (for real this time ) If they do not beleive you will retain pee and be unable to void make sure they at least teach you to straight cath yourself before they even begin the procedure. I couldn't pee after the fluro procedure and swore my bladder would burst before the weekend was over (had it on a friday). When i did go in they scanned and found no pee. I told them it was because I was not drinking and have already gone 13 times before 0900AM (bowel movements that is.) The nurse was awsome when I told her the flouro showed retention she said there was no way I should have nothing if it did. She had me drink 14+ glasses of water and wait until I had to pee again. This showed me having over 360cc of urine after I voided. We were not sure if it was from the procedure itself or the detrol I was taking. I was told to d/c the med and she tried to teach me to self cath (Which I CAN do with my eyes closed and one hand behind my back.) The pain was too unbearable to even get the catheter in using lidocaine. She then placed the smallest foley she had, and gave me a leg and regular bag. I know the self cath may be painfull for you but the 24th of Sept is a Friday. It would be better to be prepared then to try to get a hold of your uro on a weekend let alone visit the ER because you cann't void. I'm not sure if you can purchase self caths without a prescription so make sure he understands you wanting ot be prepared or you will show up early Saturday Moring on his doorstep


    OH my Lord....beat me...another novel. I am sorry but his pain control issue is driving me nuts...I feel useless and since my entire job is insuring patients have pain control I just tend to beat the dead horse over and over and over......Let me know if there is anything I can do to help advocate for better pain control for you
    ANd someone or rather anyone that is feeling spammed please private message me...I can always private message responses if they are too long and annoying. If they are in anyway helpful I will continue (do a vote Kim shush up or Kim continue to blabber ) I won't be offended...and if needed witl try to cut down replies to 1/8th their size.
    Good luck ibtracy I'll be saying a very hundred prayers for you
    TTFN Kimbamor

    In our lives, we only meet a few people who will ever really touch us. To let even one get away is a waste you'll regret forever (Alicia Scott).

  15. #15
    Registered User Just Mary's Avatar
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    Good luck. I had my cysto on Friday, and it wasn't too bad. The cath hurt my urethra going in. My urethra hurt the rest of the night when I peed (it was a bid difficult to pee after) I called on Sat for some Pyridium because my bladder hurt (I think that was food related.)

    I hope all goes well.
    Mary :dogrun:

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