In office cysto-- Hurt??

[JenAZ07]

I am in the middle of the diagnostic process-- already had the potassium sensitivity test done and I am not sure if they consider it a positive reaction or not. Didn’t have change in symptoms during the procedure, but 30 mins later I experienced the worst burning sensation and extreme pain. I couldn’t even walk myself to the bathroom—my secretary had to come with me—super embarrassing-- until some pain meds kicked in. Got better in a couple of days (flaring for like 5 or 6 days), but still not sure if that is considered a positive reaction.

Next Wed. I am scheduled for an in office cysto and they really didn’t give me any pre-visit instructions. They also told me I could go back to work afterwards. Now I am scared that it will hurt a lot (too much to return to work) and getting really scared and anxious. Although I have frequency/urgency issues, they don’t bother me as much as the pain…so that is my biggest fear.

Please, tell me what I can expect with the in-office cysto?

Thanks,
Jen

[Claredale]

I honestly wouldn't have it done. It's really tough to get a good diagnosis without them doing it under anesthesia. I am curious, what did you mean about them considering a positive reaction? Did you feel any burning when they put the solution in?

Tracey

[JenAZ07]

Not really—had burning sensation with one solution – not sure if that was the water or potassium solution, but the burning was in the urethra area, not the bladder and the tech doing it said that was caused by the catheter not the solution, so who knows. So b/c I didn’t have much of a reaction while they were doing it in the office, and only after I left, I am not sure if that is considered a positive reaction to the potassium.

If cystos aren’t good for diagnosing, why do they do them? The only thing I can think of as to why this dr would do in-office cysto versus cysto w/hydro it is that I am allergic to general anesthesia—have severe reactions, from extreme itchiness, hives, to respiratory failure-- so they may be trying to avoid an anesthesia situation.

Is there another test they could do to diagnose IC?

[Claredale]

I am sorry that you have a bad reaction to the anesthesia. It makes me go into several nausea, so I hate anytime I have to have surgery. The reason they do the hydro/cysto together is so that they can actualy look inside your bladder with it stretched out more than you would be able to handle awake.

With my potassium test, I felt immediately burning and wanted to jump off the table, but they immediately put in lidocaine which made the stinging burning feeling go away. My pain meds also kicked in. Some people on her have doctors that pretty much go by their symptoms and don't do hydro or cystos, but back when my IC was diagnosed, was my first real surgery so I just said okay and did it. I was glad to know that I had a conclusive diagnosis and what the damage was that we were dealing with.

Hopefully someone else can chime in about other options to diagnose IC. My diagnosis was 20 years ago, so I am sure there are other ways to keep you from having a reaction.

Tracey

[ICNDonna]

Since you've already had a catheter inserted, you pretty much have an example of what an office cysto feels like. It's not fun, but not horrible either. I have had several and what helps me most is to r-e-l-a-x. What I do is to concentrate on breathing slowly and evenly and cousciously relax. The procedure is over within barely minutes.

While an office cysto will not usually diagnose IC, it can help a lot in the "ruling out" process that is an important part of an IC diagnosis.

Even after my very first one, I returned to my office immediately afterwards. I was a little uncomfortable, but not bad.

Warm hugs,
Donna

[mlzippy7]

This is just my experience. I had one cysto in the office and it was the worst torture of my life. I will NEVER EVER forget the pain. I couldn't walk I was in so much pain. I never went back to that doctor again I suffered for a long time on my own. Since that time I found a doctor(uro) that will only do my cystos under anesthesia. No matter how quick they are he will not put me through the horrible pain. I have had several catheters over the years and yes it hurt a little but nothing like the cysto they did. In fact the last year I went for weeks with a catheter in as they were hoping this would help my severe frequency...no luck though..just a lot of spasms.
Again this is just my experience with the cysto in the office.
Good luck to you!!

[Charisse]

I had a negative cysto in 2002. In 2007 I had the PST done which was also negative however I had extreme urethral pain from the insertion of the catheter. My dr was confused as to whether I was feeling pain from the catheter or from the potassium . . so we decided to do the Hydrodistention. He decided not to do the in-office cysto because he did not want to put me through that pain again. My Hydrodistention was positive and he also saw a lot of urethral inflammation which he said is probably why catheters hurt me so much. I have don't want to try anymore instills because the action of the catheter is too painful and the solution from instills doesn't soak in your urethra where most of my inflammation is.

[Claredale]

Thanks for sharing that Charisse. I don't hear very often of people that can't handle the caths either. Even the smallest ones irritate me so easily.

[patricia1]

You have gotten some good advice already..So I maybe just repeating what you already heard.

There are not many test to diagnose IC. You have had one already the PST the other is the Hydrodistention with Cystoscope. This is done under anesthia in the OR. Simiply because if you were awake they could not inflate the bladder enough for them to see what they are looking for you would not be able to take the pain.

Like Donna mentioned the in office cysto is used to rule out other bladder conditions. Most of us when starting out in the world of IC or any bladder condition has the in office procedure done.

Some doctors will diagnose on symptoms alone and others want the test. Have you tried or started the IC diet. This could help your symptoms alot.

Best of luck to you.

[tigger_gal]

I agree with Donna.. it helps alot to try to focus on relaxing. He may want to do the in office cysto to see if there is anything going on.

[Charisse]

I've had the smallest catheters as well. I tried a Red Robin (rubber latex cath) and lots of lidocaine jelly. That one didn't hurt going in at all (probably due to the lidocaine) but an hour later I was in excruciating pain again. I am terrified of the next time I have to be cathed. I hope never!

[donnadb40]

Don't want to scare you but YES, in office cystos hurt and are of little value in diagnosing IC... I wouldn't do it..

[runningemiles]

I wouldn't do it again either now that I know what I do b/c then they usually want to do the hydro/cysto. w/ anthesia. I was in so much pain I stopped adn threw up on the way home after they told me I would be fine. About two hours later when I tried to go to the bathroom I held it b/c it hurt SOOO bad. I called my doctor and pretty much had to beg to have anything called in. I am not saying this to make you anxious or scared but wish I would have had this website and useful information and at least I would have been prepared. I had mine on a Monday and was down for the next two days.

[dreamy]

I did okay with the in office cysto. In fact the cold water they put inside my bladder felt so good to me I wish I can do that all the time. I had the most relief when I had the cold water put in and when I peed it out it felt soooo good! It wasnt as bad as I thought it would be during it but it was uncomfortable for a little while after a tolerable amount though. The area felt a little bruised because they put the wire inside the urethra to look into the bladder. I soaked in a warm bath with baking soda and took a mild pain pill and I did okay.

I learned today that I cant do the instills because I get worse after being cathed. I think the mouth of my bladder gets irritated from the catheder being in there and it causes me to burn and have irritation so I am going to hold off on instills for a little while.

[born2swim]

I have had 4 of them...

I can tell you what helps:

1) Take a pain killer before, but make sure it won't make you groggy as you have to drive
2) Ask them to use Lidocaine gel to inject into your urethra before the procedure
3) Ask your doctor to leave some saline in your bladder so when you are done, you can pee it out. That seemed to 'cool' my urethra which what hurt me the most from the procedure.

Good luck!

[cia]

See if you can get a little valium to help you relax before the procedure. Let your doctor know how scared you are. If you can't relax things will tighten up and make the procedure that much more difficult. If you are going to work right after, bring either ice packs or heating pads (or both) with you.

[GriffsMommy]

I have had two in office cystos done. The first one was in 2003 because there was a mass found in my bladder during a pelvic ultrasound. The second one was in early 2007.

I am not going to lie, the first one did hurt alot but that was because the dr did not even worn me before the appointment he was going to do it, he did not use any lidocaine and I had an endometrial mass in my bladder that was bleeding which would obviously add to the discomfort. This uro did not drain the saline out after he was done and made me use the bathroom right afterwards to void it out. For me voiding out the cold saline right after having the cysto w/o lidocaine was painful.

Fast forward to the one I had in 2007 and it was a totally different experience. The nurse made sure to injection lidocaine up into my urethra before the cysto and let it sit for at least 5 minutes before they did the test. The most helpful suggestion I recieved from the nurse was to breath out while they were putting the scope in. If you're breathing out then you can't tense up your muscles which is what makes it more uncomfortable. It wasn't fun but my dr was very gentle and tried to make it as pain free as possible (this was obviously a different dr than the one who did my first one). I also had the saline drained back out for me when they were done which I personally found to be much better.

I am not going to lie, the day that I had the cysto done in 2007 I took the whole day off from work because I had a feeling I was going to be sore and I was. I came home and started chugging water to get the burning to decrease which is what the nurse suggested. I also took a pain pill that I had, which I would have taken it before but didn't and I also took AZO which is over the counter bladder pain meds. I found this to help as well. I was def sore and flaring for a couple of days afterwards but was able to return to work the next day. Everyone is different, some say as you can see it wasn't any problem for them and others have more pain. I think it is a valuable test though because it allows them to look in your bladder and make sure something else isn't causing your problems such as bladder cancer. If you trust your dr then I would say you should go for it. I would also make sure if you have not already done so to tell the dr that you had such a bad reaction after you left from having the PST done. Maybe it was a delayed reaction for you and with that info they will say you have IC for sure. Good luck, you can get through this just fine. :grouphug:

[lisabar36]

Hi, I was asleep for most of my cysto's except for one. The doctor didn't even tell me she was doing it with that visit so I was un prepared, the actual cysto did not hurt, it was a little uncomfortable but she did it so fast, I don't even know how she could see that fast, she put it in and then rght away took it out and it was over, but it was after the cysto I really felt it. She gave me prosed ds when I left, and I took that as soon as I got home, I had really bad pressure, frequency, pain and spasms. It lasted 3 days, but at the time I didn't have anything for pain, just the prosed ds. Now I get the same reaction to a gyn yearly visit. So I am just really sensitive and that doesn't mean you would be, if you go prepared, I am sure you will be fine. :)

[mary124]

I have had a couple of them done, (after I was diagonsis due to some problems that I was having. first of all if you can relax that will help; second if you have any pain medication like someone else said, but make sure it doesn't make you sleepy (or if it does have someone drive you home). I was able to go back to work after both of these, they only took a few minutes, and to me it wasn't too painful.

[sickofmybladder]

My daughter is probably going to have an in-office cysto at the end of this month - she tested positive for the PST but had abnormal cells on her urine cytology - so in her case it is necessary - like you - she is very nervous (the catheter experience with the PSt for her was really bad) - so she will be taking a valium before the procedure and hopefully have pain meds for after -

IF they are doing this to rule out other conditions (like bladder cancer) then it is important - but if they are doing this to check for i.c. - I agree with the others they won't really be able to tell unless you have the hydro/cysto (which is out patient surgery).

If you work - I would suggest that you take the day off - my mom had an in-office cysto many years ago and did not know they were going to do it until she got to the uro's office and they sent her back to work afterwards - she was not prepared for the after effects and said had she known she would have taken a little time off (just FYI).

[tracyscherer]

Please never do this without anesthesia.
Most painful thing I have ever expereiced in mylife.
You can read everything the URO websites say...and they all say if IC is suspected ....use anesthesia!
My questions are why would a doctor want to put someone through so much pain? I mean anesthsia is available, why would anyone not use it when the chance of pain levels is so high?
If anyone was to do to my child what that doctor did to me.....oh I pity the doctor!

[VickiB]

It's kind of amazing, -the various responses you're getting!

I've had two in-office cystoscopy procedures done. The first was simply horrible and kept me from seeing another Uro for over 20 years! The second was slightly uncomfortable, but only to the point that I winced once or twice during it.

I wonder if the first didn't use lidocaine and the second did? Was the size of the scope used dramatically different? Or perhaps it had something to do with the skill of the doctor?

In both cases I was slightly irritated for about a day afterwards, but not enough to stop me from going back to work.

Good luck with which ever route you choose to go!
Vicki

[LaurenEngland]

Hi Jen,

I had one done and I have to say it's not too bad. It's uncomfortable and a little painful but still bearable.
it's important to have one done if you want to get results but of course, it's up to you.
I was in and out of hospital the same day. I wouldn't go back to work the same day though as you'll get a lot of pain when urinating for 24 hours after the cysto.
Other than that you should be fine. Fingers crossed xx

[kuntrygurl78]

For me it was one of the worst experiences ever! I was awake for mine. My doc tried to be gentle and the doc and nurse made me feel like a wimp because I kept telling them it hurt.

I left in so much pain and drove the 40 minute drive home. Looking back, I shouldnt have been driving. I just took the country roads and went as fast as I could so that I could get home. My husband called while I was driving home, and I just started crying. By the time I got home, he had my blanket warmed up, a heating pad, and some water ready for me.

I wish that I would have had this done under anesthesia. Or at least, had someone with me to drive me home.

[momtoSM]

Jen,

When my frequency/urgency symptoms first were evident in 2003, my uro at the time did an in office cysto. I had my husband holding my hand during the procedure which helped. They did numb the area for me and the actual scope going in and being in there did not hurt that bad. It felt uncomforable, but not unbearable. The worst part for me was afterwards when I had to go pee since he distended my bladder. Peeing felt like a UTI, burning, etc. I could barely sit back in his office while he tried to talk to me afterwards. I wanted to tell him to shut up so I could leave, but of course I didn't. Luckily with my husband there he was able to listen to the uro talk afterwards. The pain was bad on the drive home, but soon after I took the pain med, my symptoms were gone. I did go to work that day.

The uro never said he saw blood spots and I was never told I had IC, which now makes me wonder if, since I was not put under, he could not distend the bladder fully to see the blood spots. At any rate, a month after the procedure my symptoms completely went away for almost 4 years. My symptoms returned this past June (probably due to drinking coffee and being stressed). My new uro did my cysto at the hospital this past October and I was put under. That way is obviously more comforable. He did see blood spots and my urgency and frequency has only gotten a little better since then. It's been almost 3 months since my hydro and it's not gone, just a little better.

I'm almost wishing that I could do an in office one again since the first time I had it, my symptoms completely went away. But, I'm sure that had nothing to do with it, I just like to think so.

Don't be scared! You will get through it, I promise. Just think of it this way, you may have a little momentary pain, but it may be worth it in the end.

I'll be praying for you! Let us know afterwards how it went!

Erika :)

[JenAZ07]

Thanks for all the responses. I was shocked at the varying responses…some saying it is the worst pain, some not so bad. Then again, all of our symptoms/treatments are different, so I guess it is to be expected. The uro told me IC is a diagnosis of exclusion, so he is using the in-office cysto to rule out other causes, i.e. bladder cancer.

One of my co-workers had this procedure done a few years ago and said it while it didn’t hurt him (he doesn’t have IC), he was unable to control his bladder functions (peed his pants) for several hours after the procedure. So…yep I think I will be working from home that day. :) Luckily I have that option. Not everyday, but a few here and there and my boss doesn’t gripe. Hopefully after this appt my uro will be willing to give me some of the typical IC meds to help with my symptoms. I already take pain meds, but not enough to really dull the pain, just make it enough that I don’t kill everyone I come in contact with. Lol!!

Thanks again and double thanks for the suggestions. Hopefully I will remember them when then the time comes. Hubby will be there....so maybe he will be in charge of remembering. :smile tee

[lauraheather]

I was really interested to read that several people experience extreme pain with catheters. I go into a HORRIBLE flare every time that I get catheterized. I actually refuse to have them done now. Every time I go to my uro they want to do one and I won't let them. The doc is ok with that. I have tried the lidocaine, but I still hurt immensely during and after. Is there anything else that helps or are catheters always going to cause me to flare? Thanks for sharing your experiences.

[Claredale]

I won't be of any help but to verify that I can't be catherized unless it is absolutely necessary. My urethea is just too sensitive. I do fine during the actual procedure. Its the days that follow that I go into intense flares. My doctor even put in my file to only cath if necessary. Even during my surgeries when they had to cath, the nurses were instructed to take out my cath before they woke me up. One time, I woke up and it was still in when they had already taken me back to my room. I called the nurse, but before she was able to get to me, I was screaming in pain even with morphine in my system. Another doctor in my doctor's group tried to do 1 instill in me last October and instead of standing my ground and saying no, I thought I might as well give it a try, they kept telling me it had lidocaine in it. That was my last flare I had and it lasted for several days.

I hope you find your answers!

Tracey

[born2swim]

Having a cath or foley kills me. When I had my first surgery, they removed my foley before I woke up, but the pain was all I could feel. I can't tolerate caths... and I even tried weekly instillations. Because of the urethral pain/irritation, we didn't continue. I didn't get help from that either just because of my poor urethra.

[cia]

This may not be the right way to do things, but when I switched Dr's last year I took a 1/2 Percocet and a Valium before I saw him. I knew this would mask some, but not all, or even most, of the pain, but that was OK with me. (we had e-mailed all the chatter, all that was left was the exam) I knew I would still feel enough to know what hurt. Of course I was already in pain when I saw him. When I am in pain and you ask me about my IC, all I do is cry, literally, this way I was able to at least hold a conversation with the doctor. Usually I bring my honey to do the talking. This was my first (only) time having urodynamics done as an adult. I had urodynamics done repeatedly as a child, and I remember my mother giving me Bayer children's aspirin to keep me comfortable before we went off to Children's Hospital in Boston.

[cia]

I had an instill last week and then sat around in terrible pain through the weekend, blaming the cath the whole time. Turns out I had a raging infection and was actually running a temp. I got some Cipro and had the nurse do another instill to see if it would make me feel better. I also let her know that I found her to be much gentler that the other nurse. The person that does the cath can really make a difference.