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Just Had Cysto
Just had a rigid cysto on monday and have had the most pain I’ve ever had after being doubled up with pain and shaking violently it took an 11/2 hr before they gave me a morphine injection ( nurse said I was having bladder spasm ). On being discharged from hospital the nurse said that there wasn’t any reaccurance but they had done biopsies on some red patches seen but nothing to worry about (have I heard that some where before ) I had a course of BCG for CIS ( well I had 3 before they stopped because of heavy bleeding ) its really worried me now that this is CIS again and the Consultant has said that will not attempt BCG again. :'(
T1 G2 CIS
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8 Replies
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Thanks everyone for your thoughts but as normal Wendy I will have to wait 4-5 weeks for pathology then the consultant will have his multi disciplinary team meeting so I shold find out what is being recommended next by the end of march. :-X
T1 G2 CIS
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My first follow-up cysto was with a rigid scope… maybe I had enough local anesthetic, cuz it wasn’t too bad. What hurt was afterwards, when it wore off – no spasms, just hurt to pee again, maybe from bumping the inside of the bladder with it. My next one is on the 14th – hope I never have those spasms! :-X My doc also said that rigid gave better results…
Lauren
TaG1 12/05
3 recurrences
BCG started 9/09
Just had a rigid cysto on monday and have had the most pain I’ve ever had after being doubled up with pain and shaking violently it took an 11/2 hr before they gave me a morphine injection ( nurse said I was having bladder spasm ). On being discharged from hospital the nurse said that there wasn’t any reaccurance but they had done biopsies on some red patches seen but nothing to worry about (have I heard that some where before ) I had a course of BCG for CIS ( well I had 3 before they stopped because of heavy bleeding ) its really worried me now that this is CIS again and the Consultant has said that will not attempt BCG again. :'(
T1 G2 CIS
You poor dear! From what I have gathered, rigid cystos are done under general anesthesia because of the discomfort they cause, while flexible scopes are used in out patient settings. But rigid scopes show more than flexible, are much more accurate at detecting cancer.
If you have had CIS, try to get yourself to a place that uses the fluorescent cysto technique. It shows up 30% more CIS than a white light cysto. See this info:
http://blcwebcafe.org/hexvix.aspThis approach makes flexible scopes are as accurate as rigid scopes.
What is lined up in the way of treatment? Have they mentioned cystectomy? When CIS does not respond to BCG something must be done.
Keep in touch,
Wendy
Patricia,
Yes, indeedy, I’ve had 2 babies, and I can only imagine that if bladder spasms feel anything like the uterus contracting then, ……yikes! :o
I am so glad to know what a bladder spasm is now. I was just guessing before that it was just having to run to the bathroom a lot….like a spastic colon (spastic bladder :D)…
Anyway, I’m in the know now….
Very best regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Rosemary have you ever had a baby?…we generally try to forget those contractions….however, a bladder spasm…thats what it feels like…lots of fun!…I had them after my cystectomy strangly enough but it was due to my bladder filling up to quickly what with an IV in and i didn’t recognize that i had to empty my bladder about every 20 minutes…the docs were puzzled…thought i was being overly dramatic until they saw the urine shooting out of my stoma which was not supposed to happen as there is a back up valve……..Well surprise!! I worked it out but the doctor definately told me not to drink as much water as the nurses told me to drink. That solved the problem. My pouch still spasms but its just telling me i have to cath…nothing like what i first presented with……..Pat
Mac,
This does not sound pleasant at all. Plus, it sounds like you are not very reassured after going through all of that. I hope that you will get your reassurance with the biopsy results.
My doctor always has dispensed meds to me for “bladder spasms”, but he never told me what a spasm would be like. Now, I know.
I hope you feel better (all the way around) soon.
With regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Mac,
My theory:
They remove the cystoscope (after taking the biopsies)
Urine starts to fill up the bladder
Urine hits the sensitive areas that the biopsies left
Bladder goes into spasmAt least that’s what happened to me after deep TURB
Catheter stopped spasms immediately, in my case, since the urine drained out before it hit the TURB spot giving it a chance to heal.
I don’t know why they made you wait so long before giving the morphine; probably had to find a Dr. to sign off on the meds.
I apologize if this seems elementary but I’m still learning myself about all this stuff. :P
Bob P
Hello
I had various BCG courses prior to my cystectomy last Oct. I think I was on it for 1.5 years; the 6 week induction and then several “maintenance” courses. BCG can definitely cause red patches to form that are not recurrent CIS. They have to check them though because obviously they might be. BCG resistant CIS is not something to take lightly from all I’ve read and it’s good that they are being thorough.I’m just a bit younger than you at 43 and I’ve been through the experience you are having. It’s not nice. I’m in UK too. But even though my BCG didn’t personally go the way I wanted and I ended up losing my bladder, 4 months on I’m feeling pretty good and my life is largely back to what it was before all this happened. Honestly.
It sounds like your reaction to the BCG has been pretty extreme and unpleasant too. But hopefully it’s done what it’s supposed to do.
I had what sounds like a similar bladder spasm horror to yours about 12 years ago. Bloody awful. And it took them an age to get me the morphine too! It made me think that it would be like that every time I had a cystoscopy but fortunately most were pretty bearable.
Best Wishes
Tim
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