Cystoscopy Test

[Cordelia]

Anybody had this as a 'standard/routine' pre-transplant test? Absolutely nothing is wrong with my bladder but I guess the urologist wants to see inside of my bladder for reasons of kidney function for when I have a transplant.

Is it any different than a catheter? I know with a catheter, when I had my c-sections for the birth of my kids I did feel a bit of pressure, but nothing too bothersome.

I'm just wondering, does the scope make you feel like you have to pee and will they make you hold your urine or do you have to pee in front of medical staff? I don't have a leaky problem with my bladder and I have read and heard that those who have had a leaky issue have to pee in front of the medical staff. I was horrified to hear that and I'm hoping I won't because I'm not being tested for bladder problems in the first place anyways.

Mentally, I don't think I will have great bladder control esp knowing that water/saline is to be forced up into the urethra. ( I never did very well holding all the water for pregnancy ultrasound tests)
If I'm asked to 'hold it in' I don't think I will be able to and will worry about making a mess on the exam table/bed and being totally embarrassed and humilated in front of strangers even though I know they're likely used to seeing things like that happen all the time. I get pretty squeamish about stuff like this when I know tubes are going into places that ain't normal   

I've never had this test done before---I've googled it to get some details but can someone here who's been there done that give me the low down on start to finish what to expect? I know I'll be having a cream/gel put on for an anesthetic and that's it.

Do I have to have an IV put in or anything like that or a blood pressure cuff during the exam? I have to go to day surgery for this but I was told there is "no prep" for this exam/test and it sounds as though I can leave right after the test is done. Will it be done in the OR?   

I did ask to get a prescription for Ativan prior to the procedure because I know I"ll be needing something to help relax me since I know I'll be tense and nervous.

Any advice on what to expect would be great appreciated. My test is this coming Monday and I am dreading it.   

What doesn't help is that I don't like my urologist and his bedside manner quite frankly sucks so that does not make this procedure any easier walking into it. I asked to be given a general anethetic and the doctor refused. I was not a happy camper when I heard that so I requested the ativan instead.   

I don't want to see the tube so I'll likely be lying there with my hands over my eyes, not wanting to see anything. I know there will be a drape across me but still, I don't want to see anything like that going inside of me.

One thing I DO know is that it will most likely burn to pee right after....I had a D & C done years ago and it burned, felt like my bottom was on fire literally after I was scraped out.  I guess I'll be drinkin' lots of water after because I don't want a bladder infection....unfortunately even though I'm not on fluid restrictions, I still like to be careful as to how much water I drink between my dialysis treatments.

I wish the test would have been today. Tomorrow is the start of a long weekend for me and I would have rather have gotten it done and over with so I could enjoy it instead of dreading what is to come. I just can't wait to get the darned test over with then I'll be happy!

I have been doing a lot of reading and a lot of people suggested that the numbing gel needs to be put on for at least 15 minutes prior to the procedure to be effective. I don't want to feel any pain so maybe what I'll do is request he not go in with the tube right after the gel has been put on. Is there any truth to that?     

[natnnnat]

I had a cystoscopy and urodynamic scan last year.  The cystoscopy was via laparoscopy, and I didn't like it very much, took much longer to recover than I expected.  But you sound like you are describing a urodynamic scan... what they called a urodynamic scan anyway... where they put a tube in your urethra and then put liquid in there and then you wee it out into a pan?  Something like that?  and they look at how well your bladder empties.  Trying to recall the details.  Hmm. 

I remember that it didn't hurt much.  There was a bit of a burn or buzz when they put the thin tube in, is all.
It was a bit embarrassing but I got over it.  They (the doctor and the nurse) weren't embarrassing, it was just my not being used to having people looking at my bits. 
I was worried about leaking too, but I dont think I did, and even if I had they wouldn't have been disgusted. 
Afterwards you are asked to wee into a special arrangement, its like a chair/toilet thing, with a pot under to catch your week, and the pot sits on a scale, so it weighs your pee and they know how much came out.
They left the room for that bit, so I had privacy.  I should think, if they don't leave the room, just complain that you can't pee in company and they'll get the hint.  The reason my lot left is (they said) because some people can't pee in company, so use that as the reason if you need it.
And they gave me an antibiotic afterwards to stop UTIs.  I get UTIs *all the time* and I didn't get one that week.  I used to get UTIs almost once a month around then.  Now I have strategies which seem to have reduced the UTIs.
Anyway.  This is a bit vague I know.  Hope it helps.  Mainly I think you shouldn't worry too much, it was pretty mild really.  And I'm a sook when it comes to medical stuff.  Hope you sail through it. Spend the weekend doing something lovely and distract yourself.

If it was a cyctoscopy via laparoscopy, that would be different, I would tell you to prepare in various ways, so I'm not just saying this.

[Cordelia]

Oh, defintely, I will be kicking them out! LOL! I cannot pee in company either! LOL I'm what you call "pee shy!"   

[tyefly]

I have never heard of that test.... and I have been on the transplant list for two years now....each year having to renew my test.....  never had anything like that....

[MooseMom]

I haven't even heard of this test, and I've been on the waiting list for coming up to a year.  This seems over the top, but then again, transplant centers have us all by the short and curlies, so we don't have any say in the matter.

[Cordelia]

You're absolutely right, we have no say. I tried to wheezle out of it, but I was told, basically in the long and short of things, nice try. Oh well, I tried. It's the most intruding test I have to endure to get my transplant so I guess I'll just shut up and say no more and just grin and bear it. Hopefully the Ativan will help me to relax and hopefully it'll be over before I know it!!!

I managed to weezle my way out of having a mammogram done, so I can say at least I talked them out of that one. No way was I going to do that test with a central line above my breast. No way!!!!   

I'm trying my hardest to keep distracted ....today I went Canada Day sale shopping and bought a whole bunch of new flowers for my gardens, I'm about to go outside and take advantage of this nice summer weather to plant them with my family!   

[Sax-O-Trix]

Tests I had to get to be placed on the UNOS list and for my pre-emptive transplant approval:

1)  Blood work
2)  EKG
3)  Urine test (pee'd in a cup)
4)  Mammogram
5)  Pap
6)  Exercise stress test with ultrasound of heart
7)  Stool blood check via the coordinator sticking her flipping finger up my rectum under much protest (so glad she retired very soon after because I never wanted to see her again after that, lol).  I was pretty angry that I was not warned about this "test" ahead of time.  Oh, she also took the opportunity to give me a breast exam even though I already had the mammo and a breast exam with the ob/gyn.   I would have had my ob/gyn do the stool test while I already had my pants off for the pap if I had had some sort of warning that they wanted the test done.

 
I did have the recommended Dental clearance done, but they never asked me for the signed papers.  No other tests, not even an ultrasound or CT of my kidneys even though my Neph had told me at one point that they wanted an ultrasound.  It just never happened:) 

I'd be fussing up a storm about the cystoscopy...  What exactly are they looking for?

[okarol]

The older I get the less I am inclined to agree to a test that I am not given a specific reason for.
The cystoscopy is a diagnostic tool. What are they looking for? They are peering around with a camera to see the bladder and ureters. Why? Jenna's kidneys were damaged by her bladder pressure, and she never had that test. The test she had was a voiding cystourethrogram (VCUG) where they xray the bladder as it fills and empties. The urologist on the transplant team, who Jenna has never met, actually wants to do another now, 5 years after her bladder was surgically augmented to be larger (to reduce pressure by increasing volume.) And we are asking : WHY? What are you looking for/ruling out/concerned about? The answer they give is "the urologist just wants a current scan." We are going to say NO, unless there's a good reason for it. It's expensive, uncomfortable and I have concerns. They may tell Jenna that refusing it will keep her off the transplant list. Fine. We will go to another hospital. Sorry about the rant. My point is - find out why they want it and what risks are there. I ready about cystoscopy and it sounds like its used to find a blockage, find kidney stones or reasons for urinary incontinence, urinary frequency or hesitancy, an inability to pass urine (retention) or urinary tract infections that do not respond to treatment. Do you have any of these?

[MooseMom]

I've been thinking about this discussion all evening (OK, so it's been a rather dull evening...), and I still can't understand why you should be subjected to this test without any real explanation, especially since you've reported no problems.  It seems like a waste of money and resources.

I understood the rationale behind every test I had during the evaluation process, and frankly, I was sort of glad to undergo them because at the end of it all, it was a relief to know that I was in quite good shape.  But I made very sure that I knew the purpose of the test and what its relevance was in the grand scheme of things.

[natnnnat]

I had mine because of the trouble with UTIs I mentioned.  Worth pointing out that they found no reason for the UTIs via the urological scan, nor via the subsequent cystoscopy via laparoscopy.  I was very very grumpy about many issues related to the laparoscopy.  Of course, I am one case, perhaps others have had good experiences with these procedures for the issue of UTIs. 

[MooseMom]

I had mine because of the trouble with UTIs I mentioned.  Worth pointing out that they found no reason for the UTIs via the urological scan, nor via the subsequent cystoscopy via laparoscopy.  I was very very grumpy about many issues related to the laparoscopy.  Of course, I am one case, perhaps others have had good experiences with these procedures for the issue of UTIs.

If Cordelia had a history of UTIs like you, I'd understand the rationale behind ordering this particular test.  It just seems weird that it's not commonly required here in the US where they're test-happy, yet it is required at least at this one place in Canada.  Makes me go "Hmmmmmmm."

[Cordelia]

So I went and asked the surgeon, he explained it was to check for infection, scarring, size, etc. It was protocol/standard test for getting my kidney. Basicially in a nutshell, no cysto, no kidney. It was standard protocol, no way I could have gotten out of it. I did try again to weezle out of it, but didn't work.

But I survived, and it wasn't too bad. Some soreness during and after, but nothing excruitating, thank God. I got a pill prescriped to me for taking later tonight to help prevent infectin. It's a horse pill. I'm not looking forward to swallowing that. It's larger than my Renagel tablet!!!

The ativan I took did not even help, during the procedure.  It did absolutely nothing for me so that was upsetting plus the doctor was 45 mins later that I had to sit for that long in the waiting area   

I'm just relieved in a bigtime way, ti's freakin' over!!!!    And, he told me something I already assumed, there was nothing wrong with my bladder at all   

[MooseMom]

Well, this particular protocol seems pretty random to me, but your surgeon never phoned me to ask my opinion...

I have always thought it was rather strange that a visit to a dermatologist isn't part of the standard testing protocol.  I would have thought that the transplant center would want to make sure you didn't have skin cancer which is such a problem in post-transplant patients.  But I'm not going to suggest it!

[Sax-O-Trix]

Well, this particular protocol seems pretty random to me, but your surgeon never phoned me to ask my opinion...

I have always thought it was rather strange that a visit to a dermatologist isn't part of the standard testing protocol.  I would have thought that the transplant center would want to make sure you didn't have skin cancer which is such a problem in post-transplant patients.  But I'm not going to suggest it!

MM - I agree 100%.  I had never seen a Dermotologist until 6 weeks POST-transplant so I could get a once-over and a base-line.  I made this appointment on my own, nobody from the transplant team ever suggested it to me.  I made the appointment because of discussions here on IHD.  The Dermotologist was suprised to see me also.  He said most transplant patients are not pro-active in getting screened.  Yikes!

[Cordelia]

I haven't been told to go see a dermatologist pre-tranplant. My transplant doctor only asked me if I had any unusualy bumps on my body I was concerned about and I didn't.

[C904]

This test is not standard for my center, but the transplant center Urologist ordered this test for me because the amount of blood in the urine was high and that was with factoring in my ESRD.  What happened next could easily be classified as the dumbest move of my life.  I went into great detail on another thread about how I have something going on in that region that makes me super sensitive and I found this out having a catheter removed from a surgery about twenty years ago.  Ever since I was four or five years old the buzz word with my kidneys was blood showing up in the urine in high levels, not visible to the naked eye, but witnessed under a microscope.  I went through the process of obtaining copies of over thirty year old records that showed a long history of having a high blood level in the urine.  I proceeded to do a boatload of research online and took a educated guess on what the Urologist was worried about and hear comes the dumb part.  I faxed over the copies of my old records and attached a note that I am refusing to have the Cystoscopy test and I would be willing to do a type of urine test that would show if I had any signs of cancer in the area.  I sent this to the transplant center and the Urologist and I politely stated I thought the Cystoscopy was a unnecessary test. 

After some time I received a call and they had set up a urine test and I did not have to get the Cystoscopy test.  I was going to post this about a few months ago in okarol's thread about her daughter being re-listed, but I decided not to because at the time I felt what I did and the outcome it produced is not realistic and some may say crazy.  Seeing this thread struck a nerve with me and I wanted to show that it is possible for a doc to change their mind when it comes to a particular test.

Many things have to fall into place and it really comes down to the luck of the draw in getting a doc to review what you are saying and having him or her weighing the options and going a different course on what was originally planned.  The Urologist is a great doc and real even keel and all the credit goes to him because I am sure many docs would have read my letter and records and think who the f@#! does this guy think he is.

[Cordelia]

I don't understand.....did you have the cystoscopy test then afterall or were you able to totally avoid having the test done?

[Chris]

I'm having ths test done in August to also get tissue testing done/ biopsies on bladder and prostrate. They tried to do this in clinic, but they could barely begin the test due to the severe pain it was causing. Thy were also going to do the test with fluid inserted, but that won't happen now since I will be under anesthesia.
 
So you may feel some discomfort afterwards cordelia. However I never had to do this test pre transplant. Mine is for other reasons post transplant. Come to think of it, I never saw a urologist pre transplant. I only began to see one for the first time post transplant for the stint. But again, this just shows how each center has different protocols.

[okarol]

If a doctor can explain what the goal is, what they are concerned about, and why they order a test, I am happy to learn and need to understand. But when they just say to do it, that's where I feel they are dropping the ball. It needs to be a "necessary" test and not just ordered without talking with the patient first. Maybe I am getting jaded in my old age, but don't put my daughter at risk, or waste her time or run up insurance bills if you're not going to include the patient in the diagnostic process.

[Cordelia]

I did feel some discomfort afterwards, for about 5 days. I was sore. Minimal to practically no burning when going to the bathroom but I was so sore. The 'actual' test wasn't painful.  I too never saw a urologist before until recently for doing this test for pre-transplant.

When my urologist said my bladder was perfectly fine at the end of the test I actually wanted to scream at him for putting me through the 'mental' agony/aniticipation of the test. I wanted to say: "See? I told you so-i KNEW that there was no problems down there!!!!!!!!!!!!!!"   LOL     

I hope your test goes okay, Chris    And, I think you are so right by saying, different centers, different protocols.  There was no way I could have gotten out of mine, no matter how hard I tried and .......I tried oh boy did I     Unfortunetely, they didn't allow me to not have it done. But thank God, its done, it's over now.   

[C904]

I don't understand.....did you have the cystoscopy test then afterall or were you able to totally avoid having the test done?

Sometimes you write something and it makes sense to you, but not others and this may be the case, let me give it another shot.

I did not have to have the Cystoscopy test, the Urologist looked over my letter and the records that showed a lifetime of high blood counts in the urine and took the Cystoscopy off the table.  I ended up doing a type of urine test that checked for cancer.

My main point was that it is possible to have a doctor change his mind on a particular test that may be ordered before you are put on the list.  I don't think it is the norm or realistic because the vibe I get from all the people that go through this and the various centers is that there is a protocol for all the things that must be done before they agree to place you on the list.  The problem with protocols is that in a corporate environment it is POUNDED into your head not to veer away from protocol.  Unless you are having a transplant done by a major university you are now dealing with a corporate medical environment.  The hospitals across America are similar to the banks meaning that most are owned by a select number of mega corporations.  With all that being said lets call it what it is the transplant centers are essentially the hospitals and the corporations that own them.  Corporations are not the devil, but they are obsessed with not going off the script and everything is done this exact way every time.

This is becoming long winded and verbose, but seeing some of the stuff people on this board have to go through to get on that list can make you nuts.  It really is a shame and if people would just treat each case on a individual basis so many people would be way better off.

Some of my points are going off a different path on this thread, but I rolled with it because I was surprised to see someone else have a Cystoscopy ordered before being put on the list.  When I inquired about it I was told it is unusual and not the norm for placement on the list.

[Chris]

Cordelia, was an ultrasound test also done before, one with a full bladder and then after emptying the bladder (if that is possible)? Seems that would be the best measure to do than the scope. Then again maybe I am over simplifying things for doctors?

[monrein]

I'm in Toronto, Canada and never had this test ordered.  Certainly don't remember it for my first transplant either and I have a small bladder apparently. 

[Cordelia]

I am so interested in hearing others experiences.       Thank you all for your experiences.   

C904 I understand now what you were trying to say, thanks so much for clarifying, it makes sense now. I totally, 150 per cent agree with everything you said!!!   

Chris, I did not have an ultrasound test done before and after. I just remember the scope going in and I closed my eyes and held my breath and said a little prayer LOL     and then it was over pretty quick, thank God. Trust me, I had my eyes shut and I did not look at the screen or anything.  I bee lined it after I was told my bladder was perfect.  I went to the bathroom afterwards and my urologist was waiting for me outside in the hallway and asked if I was okay, and I said yes, and that was it.

Monrein, I sure wish I lived in TO now! That was one test I was truly dreading the most and the worst LOL! I'm from Ontario, too   

I'm just so glad it's over now. It wasn't as bad as I thought it would be but honestly, just the anticipation worried me as I was worried the scope might rupture something and mess up a good thing down there below