Afraid

[javone77]

OKay I went to my doctor today and he wanted to do a rescue instillation on me today but I am really afraid of the pain. I had a cystoscopy done last january by a dr who I don't think knew what he was doing. I was wide awke for it...and he only gave me some gel to dumb my urethra but it felt like fire when the scope was going in! I screamed but the nurse told me that it could not possibly hurt that bad. Can anyone tell me exactly what happens during a rescue instillation? How much pain will I be in? will my urine burn too?

[steelerfan]

Before I was diagnosed with IC, I went to a uro that did a cysto in his office, oh my gosh, I think they heard me screaming from a couple blocks down the road, and then when he was done and I went pee, I thought I was peeing razor blades, it was awful. I dont think the rescue instillation will be half as bad as a cysto, just ask them to use a small cath. I had a rescue instillation done about 1 and a half months ago, and they numbed me up with the lidocane gel before hand, and it didn't hurt at all, unfortunally for me, I have been in a flare since the instillation though. Most people on these boards find the rescue instillations rather soothing, and get them all the time.

[carlin kammerer]

I also had my first cysto in a idiot urologist office and thought I was going to die. He also misdiagnosed me, no surprise. I agree the instillations are better. Ask for the lidocaine. What is he going to use? DMSO never helped me, but that is not a rescue. Good luck!

[javone77]

Okay I had a good day today but when I got home it got bad. I turned down the rescue but something tells me I will be calling him soon for it...though I pray that I don't have to. The fact that it won't hurt...or won't hurt as bad is soothing. That first urologist is actually what took me so long to get diagnosed. I was so afraid that I'd cry. I know I couldn't do that pain again seriously. I cried the first time I peed too because it hurt so bad and he never even gave me any pain pills for the burn. My doctor seems to think that the diet and prelief will work for me. has this worked for anyone else?

[littlemyrn]

I went through 8 weeks of rescue solutions. It is uncomfortable, and it will sting after you hold it in for 1 hour. I wasn't allowed to have lidocaine, I showed signs of having a reaction. So the heprin and saline were instilled. So I had no immediate relief, but after the 8 week session I believe I improved by 40% - but 6 months later I find myself in dire straits again. So, I do have a new URO and we are working on a different plan. So good luck. It is more humilating to me than the pain. I just brought a book and laid there and read and tried to think of something else.

[Dixiefireball]

http://www.ic-network.com/images/presidentsaward2006.jpg (This response earned the Presidents Award for Rhondas practical advice on having a rescue instillation. She's right.. having an instillation is much easier and less traumatic than having a cystoscopy in the office. There are also lots of ways to make rescue instillations more comfortable. Please check the ICN Feb 2006 Ezine for lots of tips! In any case, what I liked most is her discussion of anxiety.... and how important it is to relax. Yes, yes, it hurts to pee afterwards too... but that shall pass! I find it helpful to drink a large glass of water afterwards so that when I do have to pee, I have a lot of volume to get through it more quickly. It's a bite the lip moment... but it will get better. Rescue instillations are one of the few ways that a doctor can use to stop a flare in its tracks! - Jill )

We all react differently to these instillations and it also depends on what is in the instillations. To be honest, the first few I had in the office hurt, but it helped for me to take either a nerve pill, pain pill or something to coat the bladder like pyridium? before each instillation.

A lot of the pain had to do with that I was afraid and it stressed me out the thoughts of it, because I was so scared of a catheterization since I had nightmares caths since I was a baby. (other issues with bladder and kidneys from childhood that had nothing to do with IC.) Relaxing can help so much.

This is what my uro's office did to me:

1. They took a urine sample to make sure I had no UTI.

2. I was taken in a room, got undressed from the waist down and laid on the table. The RN came in and put numbing cream "downstairs" and let it set for three to five minutes.

3. They went out and mixed my medicine. (heparin, marcaine, water.)

4. They came back in and put the catheter in.

Take a deep breath in before the cath goes in and slowly release it as they put it in. This does help with any pain from the cath

They used a ten french child size cath latex free. This can make a huge diff. even if you don't have a latex allergy..... something to do with latex down there can cause a lot of burning for some reason in many of us).

They then drained the bladder. When the bladder walls hit it was painful but she had the instillation there to put right in which eases the pain a great deal if not all the way.

Take a deep breath again before they take the cath out so you can do the same thing before when they start to take it out. Normally taking it out doesn't hurt at all, but this is just in case.

5. When it's over I put my clothes back on. I was always told to try to hold it for at least twenty minutes, but if it was too hard I could let it out but it's best to hold at least twenty minutes to get the effects it should give off. I was also given an sample antibiotic to help ward off any type of bacteria that may have gotten in during the instillation to prevent a UTI.

6. Make an appt for the next instillation. I always tried to make these appt when I knew I could come home and rest. (just in case thing.) I started off taking a driver with me also so I could take my nerve medicine or a pain pill. I would also drink a lot of water to help flush the bladder out. If needed, a cold pack helped me the most but heating pads help others better so it really depends on what you like the best heat or ice. Then take a nap or lay down and watch a movie what ever I felt like doing after these treatment.

Remember the more you relax the less it will hurt. These treatments or nothing like the hydro you went through in the office. I've heard of other ladies suffering through these. Personally, I think it's just down right wrong to have to go through these in an office. i think if they need to do a hydro they can go ahead and do the cysto with it also so they can get a real good look at the bladder plus be in the O.R. This way you're asleep and when you wake up they can help you with pain control issues, but yet I'm not the avg. run in the mill icer either and my IC is chronic with huge painful hunners.

Please give it a fair chance and remember no matter what treatment you try it takes time, there is no quick fixes to IC. All treatments takes time to know if they will or will not work. These instillations are nothing like you went through during the hydro the hydro made things so much more painful for you.

Sending you lots of hugs and prayers.
Rhonda

[Katrina]

Excellent post Rhonda!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Dixiefireball]

thank you. I just hope it helps
Rhonda

[carlin kammerer]

The diet and prelief didn't work for me. I think I was so bad when I was finally diagnosed because I was misdiagnosed for so many years. I had my bladder removed Nov. 1 AFTER I tried everything, including interstim, DMSO, elmiron, hydrozine, ellavil, elmiron instilled, diet, ect. I know how you feel. It is so hard when you have such an unpleasant first experience. I got to the point where I coulnd't sit anymore. I think if people are diagnosed early and do the diet, they do much better. Again, good luck!

[rosesitty]

Javone - ask them to use a lo-fric catheter (a small one) and to put lidocaine jelly in the urethra first. The catheter insertion is the thing that will cause some mild discomfort, the instilled meds (heparin, lidocaine, sodium bicarb) should be soothing. I'm able to hold the med in for 4-5 hours, and only have some mild discomfort upon voiding...and some urethral discomfort for the day afterward. I've had 30+ instills over the course of the past 3 years - I'm currently on a 3x per week for 3-4 weeks session.
Rhonda - it sounds like she just had an in-office cysto not a hydro. Even that can cause a lot of pain if things are stirred up.

[javone77]

How exactly is lidocaine jelly inserted. I believe that is what the first urologist used and if so, it did not numb me at ALL. I felt everything! I am talking serious pain here. When I got to Dr. Zavaleta..he told me that was the urologists first sign that I had IC...was the extreme pain I was feeling. For him to not react to it and forhis nurse to even go so far as to tell me surely my pain was not bad.....I am going to write him a letter and tell him exactly what he did to me. I felt so betrayed by him. He did a cystoscopy without letting me know it was 400 bucks...so on top of being in so much pain I could barely walk....I get to the checkput desk to discover I was being charged $400.

[icnmgrjill]

Hi Javone,

I've had two in office cystos... and yes, they hurt, but honestly I'd do it again tomorrow if he asked. Why??

#1... the information you gain from it is invaluable. In my case, I was convinced that I had cancer. The cysto results gave me great comfort because it proved that I did not have a large tumor down there.

#2... the doctor really has to be given an opportunity to look inside the organ they are trying to treat and this is the easiest method that they can use.

#3... it hurts... but it's manageable and treatable! I loved Rhonda's suggestions about. Relaxing your muscles down there is sooo important!


Lidocaine jelly is basically squirted into the urethra.

On the nurse... before you say something that could harm this relationships (the nurse is often our lifeline), I think it's important to remember that she's never had IC... nor does she understand what it feels like. I think that I would say "You know... I realize that you don't have IC and really don't know what this feels like. I'm here to tell you that, for me, this procedure was agony."

As to the doctor.. again... he doesn't have IC and can only sympathize to a certain point. But, it's such a quick procedure, that most patients tolerate it. Yes, it's painful... but it's not nearly as risky as having this done in the OR under general anesthetic. Plus, doing it in the hospital would be five times more expensive...

When I work with my doctors, I always try to remember that they don't live in my body.... and couldn't possibly feel what I feel. So, I try to very clearly tell them what is going on.

Of course, I will confess that I did try to kick my general practitioner when he did a sigmoidoscopy (yup, up the bum). Dear lord, but that was so much more than having a cysto.

You will get through this!!!

Jill :)

[javone77]

I understand they don't have IC but what I wanted came under "bedside manner". His was absolutely horrible as was his nurse. I'm going through pain you don't understand sure enough but don't get me on the table...hear me scream and then tell me what I am feeling. You have no idea what I am feeling. That's what made me the angriest. Then he misdiagnosed me which really ran me hot. Thankfully I was diagnosed while asleep. I had a d& c done and he did the cystoscopy while I was in. So now I know and I am really angry about it. I feel punished. To think any relationship I have may not last because of this. There's just a lot going on. I just pray that my first experiences with relationships and a sex life are not over before they ever begin.

[ICNDonna]

I have also had cystoscopies in my uro's office and, while they aren't fun, they aren't horrible either. My best coping mechanism for any kind of treatment for anything is to concentrate on breathing slowly and evenly and relaxing all of my muscles. This works well for me for such things as a cysto, bladder instillation, pelvic examination, and even for dental procedures.

As far as cystos go, I would much prefer having one in the office, rather than having to have an anesthetic in a hospital. The only reason I even consider hydros is that they help so much with symptoms that I can't imagine what my life would be like without them.

Just keep reminding yourself that nearly all ICers do find treatment options that work and most of us do feel good most of the time.

Sending warm healing thoughts,
Donna

[ISONormal]

Jill, just as an aside, I've had a sigmoidoscopy, and that was a piece of cake compared to doing a mini cysto in the uro's office. I was so desperate to empty my bladder after the procedure that when the nurse had trouble lowering the table (which had been elevated), I said, Forget it! I'll jump down! And I did. I did a full blown cysto later (with hydrodistention) in the outpatient surgery and was out completely so that one was not bad at all. I'm a big fan of anesthesiologists. :)