View Full Version : Really scared
I just finshed reading windwalkers thread about her experience with the Urodynamics test, I'm really scared now. I am scheduled to have one done on the 29th, the paperwork they sent me said it should not be painful just a little uncomfortable. I'm scheduled for the cysto & hydro on July 7th.
I have been having symtoms for two years now, my first uro said my urthera was to narrow and did a dilation which really hurt. when I went back 5 month later with same symtoms he said he had to do the dilation again. I said it was to painful the first time and he said it must be done. When he tried I started crying and asked him to stop he said he was not finished but would stop because I was crying. Now I'm going to a new uro who said I might have IC but needed to do these test to find out for sure. I'm not looking forward to them but if it will finally tell me what is wrong with me I'm willing to do it. :dogrun:
06-17-2004, 03:05 AM
I had urodynamics testing done last year and its not that bad. Its just a catheder insert really. The test is so valuable because at the end of it they can tell what your bladder capacity is and if you have retention and probably alot of other things too.
The diagnosis through hydro is a really good thing to do as well. You may actually feel better after the hydro settles down. And your new uro will want to see the bladder for themself. All the testing you are getting is normal stuff,
We are all here for you!!!
I'm really concerned that after having these test they say I don't have IC. What else could possible be wrong with me? :dogrun:
06-17-2004, 03:28 AM
I guess we should be thankful if it comes back negative. It is 90% accurate like a mamogram or other tests so odds are pretty good in your favor. I would try and keep a positive attitude and just treat the symptoms. I am like you, being told no, you do not have it, but still having the symptoms. I am going to push for the hyrdo test next Friday when I go. If it is negative, then I will ask to be kept comfortable and to try elmiron or whatever else they think may help. Dont forget, the majority of the people with IC are out living a normal life, not on the boards. this is a great support group for people who have been there and need support more than usual. It is filled with a wealth of info and self experiences. The stats that are posted by ICA or ICN are probably pretty accurate so we have to believe that we will find what works for us and go on with our lives. A little prayer would not hurt. I hope you get the big NO, I will be thinking of you. Keep us posted.
06-17-2004, 03:41 AM
Please don't let someone elses post scare you. Remember we are all diff. So not all test will be the same just because one person came out and didn't have good results doesnt mean you want please keep you head up high. Let your doctor do what they need to to try to get your IC under control. ((((as long as you trust your doctor that is the most important thing)))) if you don't trust him then i would find another one that i trust to do these test. I do hope you trust your doctor. remember always talk to your doctor about your hopes and fears if he is a good doctor he will listen to you.
sending you hugs and prayers
06-17-2004, 03:48 AM
I just wanted to add that there is info about IC at webmd.com that talks about the possibility of different types of IC. The boards here tend to put everything into the same catergory when it may be that some of us actually have completely different symptoms, reactions, medication, pain tolerences, etc. that could be categorized by the different type of IC that we have. The problem is that there hasn't been enough research to seperate effectively.
Don't let a few posts scare you. Keep in mind that the neative tends to get talked about more than the positive and that most of the bad experiences are being posted here because we need the extra support from our TERRIFIC IC support group here!
06-17-2004, 04:20 AM
Harrahhhh, Harrahhhhhhhh...you hit the needle on the head..That was perfect. The majority of people live a full life with this, there are some that are completley disabled by it and they may have other problems that add to the list too. Everyone is different and everyone reacts different. Take it for what it is and if you get the test and it is neg...then Thank the Lord. Listen to the people here, they have walked and are still walking in your footsteps and if I can be half of them, I will win this too.
06-26-2004, 06:17 AM
If I am understanding that you need to be diagnosed to see if you have IC, I don't blame you a bit for crying when you had pain, and asking the doc to stop! Why can't they do a cysto/hydro while you are under anesthesia???v What ever happens, I wish you all the best, and hope that things goe well, and that your diagnosis can be made painlessly. :kiss: Sheri
06-26-2004, 06:46 AM
I have had these tests done and they are not too bad....ask your doctor if he can numb your urethra with lydocaine before the test. I had a dialation done and my doctor told me it only lasts about 4 - 6 months so that would explain why you need it done again. If your doctor doesn't believe that you find these procedures painful - you need to find another doctor. My doctor does everything he can to ensure that I feel as little pain as possible during procedures. See if you can find a urogynocolgist opposed to a urologist. Especially one that is a chronic pelvic pain specialist. They understand that sometimes things hurt, regardless of what the textbooks say. As my doctor has told me - it never goes by the textbooks.
06-26-2004, 07:28 AM
the embarrassment factor is the biggest deal i had with the urodynamics. i had 2 nurses and 1 in training, so it was not a pleasant experience. but nothing like that ever is. and i was unable to urinate afterward, so after almost an hour of trying, they cathed me and let me leave. you'll be fine. just be prepared to do something you would NEVER normally do in front of people. and remember, the nurses do this all the time, so it's not anything they haven't seen before. schedule something afterward that will pamper you like a facial or a manicure. just something where you don't have to take your pants off. ;)
once you get it done, you can handle anything. believe me.
06-27-2004, 07:35 AM
I wouldn't worry about the test. Are you going to be put under? I was and I felt nothing. It's better to know what is wrong and get the problem under control. I to cried before they did it and when they were done I was like that's it?
Pamela, hope all is well on July 7.:pray: :kiss:
06-30-2004, 07:11 AM
The cysto/hydro, from what I have read, is usually done under general anesthetic, or like one gal here, a local. If that's the case, you won't feel a thing. Don't let my post scare you, that was my experience. My experience is one of very few that had such a hard time. There are a LOT of ppl. that will not have as much trouble as I did. We all have different experiences. Good luck on your procedure and let us know how you are.
07-27-2004, 05:22 PM
After researching on the internet about IC, I was prepared for a slightly uncomfortable procedure. Since I'd been feeling so bad for years, I was ready for this test. Nothing could have prepared me for the severe pain experienced. But...I forcused on what the nurse was saying to me, I cried sometimes, and did my best to handle what was happening so I wouldn't have to redo the test. The nurse who administered the test got the doctor immediately afterwards. I'm now scheduled for a cancer screen with a doctor in San Diego.....and for that procedure I will be asleep, thank goodness.
07-28-2004, 04:55 AM
ragsi, sorry you went through that pain, I can relate, just glad at least you were able to complete it. I couldn't. The uro now has me going for a cysto under anest. on Aug. 12th. I will be snoozin on that one. I just can't handle anything in the urethra, not even a pediatric cath. I hope your cancer screening comes up clean. (((Hugs))).
07-28-2004, 09:48 AM
One thing is you have an advantage by reading these posts and getting information before the Urodynamics test. My experience was bad too, but if I would have known to ask for lidocaine and the smallest catheter available, it most likely would have saved me from unnecessary pain. If it's too painful even with lidocaine and a small cath, just tell them to stop the procedure.
07-29-2004, 03:16 PM
You got some great advice. I hope some of it was helpful to you.
How did it go? :)
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