Anything I should know before I go?

[MiLynn]

I have an appt Tuesday with the Uro for a Cystoscopy (that's the scope thing, right?). Is there anything I should be aware of first? Like, will I have pain after? What if they don't see anything, will they want to do any other procedures during this appt? I just want to be as ready as possible and don't want to be pushed into other procedures/treatments that I'm not educated about.

[mom_in_ma]

If it's in the office, it's not that bad at all. I've had three. Ask for lidocaine gel to numb your urethra...other than that, it's just uncomfortable for about 5 minutes. Afterwards, you might want to take pyridium as I found that I had some burning. Some people say that they can't see IC with a regular cysto...well, sometimes they can, expecially if your bladder has shrunk or it's severe. Usually, though it's to rule out other conditions - which is a good thing.

Now, a cysto with a hydro is a totally different story and I haven't had one so can't help you there. Sorry.

[MiLynn]

Thank you! This is just the cysto, in the Uros office. I have had a scope done before, after my surgery they did one in office to remove the stent I had in. That was pretty uncomfortable, but it was because they were pulling that thing out (ouchie!) and they did use something to numb my urethra, so I assume they will this time too. So other than slight burning, you were fine after? I don't really want to have the Hydro, ever, if I can avoid it. Is that possible?

[lan]

Hi Milynn - I had an in-office cysto to rule out cancer since I had visible blood in my urine. My uro was able to see mild inflamation. Like Mom_in_Ma said, it was only uncomfortable for a few minutes - really not bad at all. And I also had burning with urination for a few hrs afterwards due to the irritation from the scope. There are many doctors who will diagnose IC based on your symptoms and ruling out other possible causes for you symptoms. Not all doctors use cysto with hydro for diagnoses. I hope everything goes well and I will keep you in my thoughts. Linda

[ICNDonna]

If you can manage to relax, it makes it much easier. When I have one, I concentrate on breathing evenly and slowly and consciously relax my abdominal muscles.

Let us know how it goes --- okay?

Donna

[Sara18]

MiLynn,
I had mine done it the office. It was not bad at all. It is a little uncomfortable while they put it in and take it back our, during it there is no discomfort. I can't remember if I was uncomfortable aftwards, but if i was it was only for a short while. I had a hospital procedure done after where they put you to sleep and put a camera in. I was out of school and work for a week.. but this one is so easy!!! If you have the one done in the hospital message me and I will let you know more details about it.
Goos luck!!

[elamar]

not trying to scare you, but mine was alot more than just "mild discomfort". I had a bad reaction after the scope was removed - I had an over the top urge to urinate. It was so bad I wouldn't get off their toilet. I sat in there for at least 40 minutes before the doctor came back to find me in tears and doubled over. He gave me some prosed that they had as free samples in the office. That took at least another hour until could drive myself home. The worst part was the doctor and his staff treating me like a mental patient. He kept saying no one has ever had that problem before. I had the same thing happen after my hydroextension. The split second I woke up, I had that same overwhelming urge to urinate. I would advise you have some sort of antispadmodic (like urelle or prosed) to take immediately afterwards. My doctor was very rough and cranked that scope around. It was horrible and of course he said he didn't see a thing that my bladder looked perfectly normal. All the more reason they thought I was nuts! Good luck to you. I don't think this procedure should ever be allowed on someone without adequate pain relief available.

[Sara18]

Oh, and to add on, I just read Elamar's response and remember that through all my instillations and any type of procedure my mom would drive me just in case, I always came out of the instillations in a bad position but not the particular one you are doing, I was ok. So if you could, I would see if someone like a mother/husband/son/daughter who can drive and understands your problem could drive you there! Better safe then sorry!

[RWadeJ]

Hmmm. My experience was more like the above poster who was in pain from it. My husband had to drive me home. At one point when the numbing gel started to wear off I almost had him turn around and take me to the ER , it was hurting so bad. I wasn't given any pain medication though. I think that would have helped.

I'm going to have a cysto w/hydro done next month. The uro I go to now said they would never do an in-office one on someone who they think may have IC.

I guess it just depends on your symptoms.

I'm nervous about the cysto/hydro next month. I swore I would never have something like that done again but I think think the information they get will be very helpful in my treatment.

Had I known the first cysto wasn't really going to provide much insight to my IC, I would have just had a cysto/hydro done back then.

Thats just me though. I know everyone is different.

[MiLynn]

Thanks for all the advice. My husband is going to drive me. I don't have any meds other than Vesicare, so I really hope this doesn't cause a lot of discomfort. My appt is in the morning, so I'll try to update here when I get home.

[MiLynn]

I'm back from the Uro appt. He didn't do the scope. I'm not sure why, but I'm not complaining. He gave me 3 options. #1, continue with the diet and vesicare. #2, start on meds (I think he said Elmiron, but could have been Elavil. It started with an E :lmao: ). #3, hydrodistention for definate diagnosis. I decided, since I'm doing so well right now that I'd just continue with the diet and vesicare but if I have a bad flare, then he said he'd seriously suggest I have the Hydro and start on meds.

[Goldfinch]

I believe I'm looking at an in-office cysto as well. Can someone clarify for me exactly what conditions can be ruled out by an in-office cysto? And what would be found that would indicate IC?

[RWadeJ]

Goldfinch - my in-office cysto was a horrible experience for me. Again, part of that I'm sure was lack of pain medication, but also because apparently the uro that did it did not even believe IC exists. They can show you what they see on the screen while they are doing it, but I was in so much pain, I didn't know what I was looking at.

I'm not sure what exactly it can and cant rule out. I think it would show any large tumors.

And, I didnt know this until I started going to a University Hospital just this year, but my capacity measured 200cc from that cysto. The uro I"m seeing now (they are the ones who will not do in-office cystos on anyone they even suspect may have IC) said that alone was enough to diagnose IC. But, it took me another year to find a dr willing to prescribe the medications.

I've been on meds for over 2 years now and I think maybe I've developed a tolerance to them, or something. Which is why I'm now having a hydro done for the first time - hoping it may help me, but also so we can get some information that may help in my treatment.

Thats why I said if I had known that the in-office cysto was going to be so hard for me and not really aid in my dx - at least not with that uro - I would have not had it done, and instead gone right to a cysto w/hydro. BUt, some uros wont do one of those, till they do an in-office cysto first.

So, its very frustrating.
Janice