Cysto...is this where they look with the camera?

[nnj925]

Well I had to go back to my uro today...I have been having some changes .....I still have frequency which I have just accepted is going to be the rest of my life...(I do not take any meds as none have worked for me.)....my new problem is when I get up during the night to go...(which is usually a3-4 times a night) even if I have to pee really bad...it takes like a few seconds...to come out??? I actually have to sit there and like exhale and relax..then it will come out....and sometimes the stream is really slow...I cannot push it out faster. and sometimes I stop but I know my bladder is not empty so I sit for another few seconds and then more will come out. *sigh*

So back to the uro I went today...he said it really could be a muscle control problem and suggested Pelvic Floor PT...and said that I should see results from that by 4-6 weeks.....he said if I do not....then I would need to have 2 tests done....1 is urodynamics...something like they put the cath in and then fill your bladder 1/2 way (i think) and you have to pee and do some other things.( he specifically said its not the hydro thing)..then he wants to just have a look with a camera (scope?) in there.

He knows I am completely terrified of the CATH....18 years ago I gave birth to my only child.....while under the Epidoral they put a cath in me....I actually felt it the whole time....it was worse than the birth than everything.!!!!!!!! He knows this...he knows I am terrified..but he said if the PT doesnt work he really feels we need to do both these things.

How the hell am I suppose to tolerate this???? What am I gonna do? I am really freaking out right now and upset....

1 of my biggest fears though...is how everyone said they hurt for days...after!!!!! excruciating pain while peeing...for how long did this last...weeks...days...forever??????? did everyone get better eventually????

I am going to post this in the urodynamic thread as well to try and get as much advice as I can....

****UPDATE**** I just spoke to the nurse from the office and she said that they use a Pediatric Cath...I am hoping this makes a world of difference??? She also said to take the AZO pills b4 the procedure and for about a day or two after....maybe this will help too?

[janet.]

nnj925

Hello nnj925,
I truly understand your fears. I am experiencing a flare up now. I just has a DSMO/hydro on the 19th (was out with a general anesthesia). Only once out of the five similar procedures I had did I really feel it in my urethra, but that felt like a dialation issue. (Felt like Roto Rooter went up there). I do have the burning though. Mine is reasonably controlled with pyridium and lots of water. The way they explained it to me, whatever is going on in our bladders is weakened/lessened by water which makes sense. My goal is to pee clear. I had no prior history of UTIs, so I can usually rule that out. (My uro tests for infection every time I go to the office. ) I know that people who are more prone to UTIs have an extra difficult time with this. I also wake up regularly to pee throughout the night. It is hard to limit water later in the evening because I am often trying to make up for drinking less wter at work. I keep track of how many times I am going. (That way I do not have to tell my uro that I go "a lot." -I can be more specific which helps both of us.) I know that seems like a lot to do, but I typically do it throughout my work day; I just put a line/check mark when I get back to my desk. Even though it is not a total number of times per day, I think it has helped to communicate. ( I was going 20-25x times in a 9 hr work day.) I also tried the frequency meds which did not help. This does go away, but rears its ugly head from time to time. After my first DSMO I was thrilled due to this reason. It really helped. I also have tried PT and will do it again (insurance issue so I wait till closer to the end of year; my insurance only covers a certain amount do I wait just in case something else goes wrong. It may be beneficial to start soon, in case you also have limited # of visits for PT. You can get exercises to do at home.My rro has also given me musvle relaxers. ( I also suffer from vaginal pain so I have a compound pharmacy make diazepam suppositories which has helped tremendously if that is an issue.) I just had the canera/scope on the 19th. This was done under a general anesthesia; tired and sore, but my dr gave me pain meds. The pyridium was alifesaver. Personally I would not want a scpoe without either a general or something similar. My personal theory for more pain when I am awkened to urinate is that I have to pee enough that it wakes me up; during the day I would not hod it."Urodynamics" is a new term fot me. I always have a hydro when I am scoped. My uro syas that it helps to stretch the baldder . My bladder capacity is low and the hydro allows him to get a better (literal) picture of my bladder. (I had "moderate to severe" Hunner's Ulcers so that may be another reason that I always get a hydro. Try not to freak out, stress does make this condition worse. You will get better. Not to end on a negative note, you may be back in the same spot again and again you will get better. You really get to know your bladder. I always suggest that people have a compassionate uro. Sometimes he or she is truly the only person that gets it. Also DO NOT be afraid to say No to things ( I should take my own advice.) Sometimes I sign myself up for too much. Discuss any fears with your dr and have faith in your heath and yourself. If it makes you feel any better, at least you know what it is-there are so many people going undiganosed for a long time. Best of luck-I am pretty sdure if you can give birth, you can get through this. You are ok despite the IC (stay in the driver's seat, you just have to pull over from time to time.)

[janet.]

nnj925

Sorry, I forgot that I also used Uribel which helped. It has several meds in one (ask your dr or pharmacist for specifics). It used to be caled Proced but now is no longer available as a generic. Maybe yout uro can give you a few samples. It has really hepled me at times. I have had no side effects (except peeing a Windex blue color.) Unfotunately it is not cheap-more reason to try some samples. Also to save $, I ask what a normal dose is (i.e. 3-4x a day) even if I am taking it just as needed. With my insurance it is the same cost if I get 30 or 90.

[nnj925]

Janet...thanks for you replies...i am not having a Hydro done.....and I am not being put out with general .....I will be awake...you have to be for the urodynamics. So I don't think my experience will be similar to yours..the hydro is different...my Uro said the hydro basically stretches a persons bladder to the brink of cracking the lining...I do not need that...we already know I have IC.

I think he is just doing the urodynamics and camera while hes in there.

[ICNDonna]

The urodynamics test measures how you are urinating --- usually a person will empty the bladder just by relaxing and "letting it go" --- if you're straining the test will tell your doctor that.

It's never good to strain to urinate --- it will only make it worse. There are medications that will help you to urinate without pushing. The ones that immediately come to mind are cardura, hytrin, and flomax.

I have had several cystoscopies in my uro's office. It's not fun, but not horrible either. I suggest you practice relaxing --- that helps more than anything.

Sending healing thoughts,
Donna

[nnj925]

Donna, I told my dr. that actually my IC symptoms were changing...when I get up to go in the middle of the night...I actually CAN'T push it out...I actually have to exhale and relax...then it comes out..but the steam just kind of comes out...on its own...like a weak flow...and then...it will stop and I wait (relax) and then more will come out till I finish...do you think that test would be necessary for that??? I mean since I am having the opposite problem then "pushing to go"

[ICNDonna]

You have to make this decision for yourself, but if it were me, I would go for it. I did at the time I was being diagnosed back in 1975.

Donna