Petrified - Test Tomorrow

[Laurie248]

Hi Everyone:

OK, I am officially petrified. My test is scheduled for noon, tomorrow.

What I know now is that I am having a cystoscopy. I will get IV antibiotics and also IV Diprivan (as the anesthetic). He'll go in, fill things up with fluid (NOT hydrodistention, just enough fluid to look around) and if he sees my bladder is normal, might not do the hydro and also might not do the biopsies.

I am BESIDE myself with fear. Reading everyone's horror stories on this site, I've been on the phone with my mother twice this morning saying I don't know if I'll be able to go through with it. I might actually get up and walk out when I get to the hospital I'm that petrified.

I'm panicking. About the anesthesia (I've never had it - thinking about it, losing control, becoming nauseated in any way shape or form)....it makes me want to cry. And then thinking about the ensuing pain, blood, pain urinating afterwards..... I mean god, is this test REALLY WORTH IT? Why don't I just modify my diet, act as though I have IC, and treat myself that way. Why on earth should I go have this horribly invasive, painful procedure if I'm only going to feel worse and more miserable afterwards?

Please help,
Laurie

[vm]

Good luck tomorrow. My cysto w/ hydro really was not bad. I will be praying for you lots. :kissing:

[Sarojini]

Good luck tomorrow... please don't freak out. My cysto/hydro was no problem -- and please mention that you're nervous about becoming nauseated. Your doctor may be able to give you something before and/or after the anesthesia to make sure you do not get nauseated. Also, if you are in pain after, do not be afraid to ask for some pain meds.

It's definitely worth it to go through the testing... this way you know for sure IC is your problem. You need to make sure it's not something else, as other bladder problems can cause symptoms similar to IC, so it's best to find out what's going on. Unfortunately, the cysto and cysto/hydro are part of this process.

Again, good luck, and I'll be thinking of you :grouphug:

[Laurie248]

Guys:

I honestly don't think the HYDRO is going to be part of my procedure. At least it's not a PLANNED part. The test is: "cystoscopy with random bladder biopsies".

Is there any BENEFIT to *not* having the hydro part of it, in terms of pain? Or possible aftereffects??? My uro said there would be no reason to do the overdistention if I have normal bladder capacity (makes sense, right?) -- so if my bladder is normal, I'll only be having the cysto and the biopsies. What are just THOSE parts of the test like?? Equally as painful? Worse without the hydro?

I've been crying on the phone with my mother all morning, this is awful. I feel sick to my stomach with fear. <:( I told her I may walk out of the procedure tomorrow if I don't think I can handle it. My husband would be SEVERELY disappointed with me if I don't do it, and that's just compounding my stress and fear.

Ugh. Anyone have thoughts?
LL

[ICNDonna]

Having biopsies taken will, for one thing, help either rule out or confirm an IC diagnosis. For me this was extremely important because my father had the same symptoms as I did and his diagnosis was bladder cancer. If he had not had the tests, the cancer would have progressed --- so the tests actually saved his life.

Another thing to think about is that it doesn't much matter what treatment or test is planned --- there will be some out there who have had adverse reactions. Adverse reactions to your procedure are not common. You may have some discomfort the first few times you urinate after the procedure, but it sounds like your doctor is on top of things and you should be fine.

I have had well over thirty cystoscopies with hydrodistentions and have not had problems with them.

You'll be fine --- and it's totally normal to be nervous about the procedure --- just remember that when you arrive at the hospital they will give you something to help you relax. You might even call your doctor today and ask for something to help you through the next 24 hours.

Warm encouraging hugs,
Donna

[Laurie248]

Donna:

I see in your IC toolkit, you have "pain medications and anti-nausea meds to go with them".

I have the WEAKEST STOMACH ON PLANET EARTH. Pyridium actually gives me upset stomach and diarrhea. I can't begin to imagine what pain meds will do.

I'm panicked about nausea from the Diprivan anesthesia but my uro has mentioned something called "Zofran" (ring any bells?) that he will give me to help with that. What about AFTER the procedure though? I imagine I'll have some sort of pain medications and if they cause the kind of nausea I hear they do (Percocet, Vicadin, etc.) I want to be knowledgable and prepared. Is there anything that can be taken WITH the pain meds to eliminate the nausea?

And lastly, all of this is going to be done on an empty stomach???? I'm supposed to stop eating at midnight tonight. My procedure is at 12 noon tomorrow. I imagine I'm going to be lightheaded and ravenous at that point. After the procedure, I'll be taking meds on an empty stomach, no??? Won't that just irritate my stomach and make things worse?

Thoughts?
Laurie

[ICNDonna]

I'm definitely aware of Zofran --- I took it for nausea following TMJ surgery. It works! My doctor ordered it for me for at home as well so I took it with my pain meds at home. I can't take pain medications without taking something to prevent nausea. Usually my doctor orders 25 mg phenergan tablets for me with pain meds, which works well for me.

Even with hypoglycemia, I do okay without food for the hours required before anesthesia --- and shortly after you arrive at the hospital, they will start an IV with nutrients so you will be fine --- you may be hungry, but you'll do fine. Not too long after you wake up, you will get some ice or ice water, which will be about all you'll want for a few hours because you will very likely feel a little sleepy.

By the time you are awake enough to swallow pills, you should be able to have a cracker with your pills --- I know I do. Your stomach will only be empty for the hours before the procedure and for a little while after.

If you're like me, you won't feel hungry in the morning --- I'm usually nervous about the procedure so I spend a lot of time in the shower and just killing time until it's time to go to the hospital.

You'll be fine.

:grouphug:
Donna

[IC SARAH-CPP]

Laurie, WE ARE NOT TALKING ABOUT THE SAME PROCEDURE!! Please dont panic, because I had a cysto, like what you are having, and the pain was VERY minimal. I wasnt even put out for mine, I was awake!! What I had done is much, much different from what you are having and it is much worse. I really think you will be fine. I would ask for pain meds after, just in case, but I dont think you will need them.
Let us know how it goes
Love Sarah

[Laurie248]

Sarah:

We aren't talking about the same procedure???

What was your cysto like WITHOUT the hydro, then???? And should I assume I WON'T be asleep for this? Does the IV Diprivan put me "out"???? Ugh, I'm so confused.

Thanks for the reassurance,
Laurie

[Babs RN]

Laurie,
The other name for diprivan is propofol and it rarely causes nausea. Zofran is top notch for controlling nausea, it is commonly used in when cancer pts are getting chemo. The diprivan works quickly--between 15 and 20 seconds and when the med is stopped most people wake up immediately. It's half-life(or time it takes for it to break down in your body)is light speed and that combined with the Zofran sounds like a very good plan to me based on my experiences. Let me know if I can help you in any other way.

Hugs,
Barb

[IC SARAH-CPP]

Well yes it is different. I had what you are having, just a regular cysto, in Jan and it hurt a little but was not bad at all. I had none of the pain I have now. I had a cysto with a hydro and a biopsy, where they stretch and distort your bladder, then cut a little piece out, my uro also scraped my bladder edges. This is the painful one!! The girls on here who are talking of all this pain, all had the hydro done.
I am not sure if you will be asleep, or just really out of it. Because I had a procedure where they gave me IV sedative, and I wasnt asleep, but I was so out of it, I dont remember it.
I think yours will not be bad!! I would ask for a few pain meds for after, just in case, but I didnt even need any when I had that.
I hope it goes well. I will be thinking of you!!
Love Sarah

[Laurie248]

Babs:

Ahhhh, thank you. Can you tell me anything about how the diprivan works? I've never had anesthesia in my life and I'm so scared. What happens? They put it in an IV bag or something and put it into my arm? Is the Zofran in the IV bag too? Does it put me to sleep completely or....???

So you're saying I should be OK with this insofar as nausea is related to the anesthesia part of things? Now, my uro said there would also probably be an IV antibiotic in there (presumably to prevent a UTI?) and I often get nauseous from some antibiotics for UTI's. Would the Zofran help for that as well?

I'm assuming you're an RN? :-) I work for a medical education company, so I'm sitting here going nuts looking through the PDR and the chemistry, etc. -- it helps to have someone explain the mechanics of this all to me. Thank you.

Warmest,
Laurie

[Ginny]

If you just have a cysto and biopsies you should have no problem. I am assuming you are going to a surgical center or hospital. If so, you will be out and not feel a thing. The pain afterwards is usually from the Hydro not the cysto.
I also had it done in the office without being put out. It was easy.
I have been put out many, many times and never had a problem. The anxiety is the worst part. Wonder if you can ask the doctor if you can take something for the anxiety before you go.
Good luck and we will be thinking about you.
Ginny

[Babs RN]

Laurie,
The propofol goes right into your IV and so does the Zofran. The propofol works so fast that as they're saying you're going to feel sleepy, you wake up. In the ER we referred to it as milk of amnesia because it is a while substance.

Hope that helps,
Barb :)

[Babs RN]

PS You will be out and won't remember anything.(hence the nickname)
Barb

[Laurie248]

Hey everyone:

Well, I walked out. Made it as far as the IV drip with saline, the Reglan and the Pepcid AC and then I started to freak out, panicked, and asked for them to take the IV out, I got up and left. I'm home now. I didn't go through with it.

I feel BEYOND horrid. : (

Laurie

[IC SARAH-CPP]

Hmmm, well that is too bad Laurie. Have you actually had a diagnosis of IC yet?? I know that this test is pretty important as far as your diagnosis goes, but if you already have that, I guess there really isn't too much of a reason to have it.
Are you feeling horrible because you are in pain, or because of the test?? I hope you feel better either way.
Love Sarah

[vm]

Have you had the potassium sensitivity test? Is that an option?

[Sarojini]

I'm really sorry you panicked, as this test could have been an important step -- especially if you haven't been diagnosed with IC or anything yet. Can you reschedule and perhaps ask for something to take before coming to the office to relax you (Valium, Klonopin, Ativan, etc)?

It is normal to be scared of anesthesia at first so don't feel bad; I know I was. :)

I can assure you the Diprovan is okay... I believe this is what I had when I had all four of my wisdom teeth removed at once and they used "twilight sleep" anesthesia. I was nervous too, because I'd never been put under before... so I was given a bit of nitrous oxide to relax me. My oral surgeon started my IV, then injected something into it and said I might feel weird for a minute. I said, "Whoa, that does feel kinda we...." and out I went. I woke up 20 minutes later with a mouth full of gauze, but no nausea or anything. They made me get up right away and walk to a comfier area for a little recovery, but about 10 minutes later I was walking out the door with my husband's (although at the time he was just my boyfriend) arm for support -- I was a little loopy for about 15 minutes after that, but then I was fine. In fact, I wanted a vanilla milkshake in the worst way, and the nurse said that would be a great idea to have a milkshake with my first pain pill, so John (my hubby) drove to Perkins and I was even able to have my shake SITTING IN A RESTAURANT after that surgery.

Trust me, that anesthesia is mild and gentle and you won't remember anything and also you will come out of it very quickly.

I was more scared for my cysto/hydro, where I got full general anesthesia (intubation and everything).... as SharonA can attest, as I've told her this story before, in pre-op I was squeezing my hubby's hand so hard he was complaining and saying loudly, "If anything happens to me, know that I love you..." and all of this melodramatic stuff. Finally my uro and the nurse anesthetist had to come out and inject me with something to relax me so I would shut up -- apparently I was scaring the other patients in pre-op :shake: I was a BIG BABY. And it turned out to be not a big deal :)

[Laurie248]

Hi All:

I spoke to my urologist. Told him I freaked and walked out. He was pretty kind, he said: "Well, I believe everything happens for a reason. If you were THAT terrified, it's probably best you didn't go through with the procedure. What I want you to do is for the next 3-4 weeks keep an explicitly detailed log: what you eat, what you drink, sex, pain levels, etc. and then we'll reconvene and discuss it." I think that was reasonable, no?

No, I haven't had the potassium sensitivity test. I also only had one cystoscopy done in my uro's office (when he found a urethral stricture and also my bladder looked sort of "raw") -- he hasn't done a cystoscopy in his office since the first one I had because I think......the language I've been using to describe my pain has led him to believe I'm in hideous agony and needed to get the cysto done. I mean, I really started wondering today if the way I describe my symptoms to him has caused him to leapfrog other, less invasive procedures, and jump to the cysto with sedation. He actually said to me: "We could do another cystoscopy in my office but from the pain you're describing, I think you should have sedation." I'm seriously starting to wonder.

What exactly is the potassium test?

And also -- I was offered a Valium before all of this, which I TURNED DOWN because I was afraid. Amazing, isn't it? I told the nurse I'd actually NEED a Valium to TAKE a Valium I was that panicked. I wonder if it would have helped...???

Sigh,
Laurie

[vm]

I love what your uro told you in terms of things happening for a reason. He sounds very nice. It also sounds like he will work very hard to find ways to help you that you'll be comfortable with.

Here's some info from a Guest Lecture here that talks about the potassium sensitivity test:

Following this, we administered a potassium sensitivity test (PST) to better identify bladder involvement in chronic pelvic pain. The PST can help diagnose patients who may have IC and/or a damaged bladder lining. Two solutions are instilled into the bladder (H20 and KCL) to check for sensitivity to either of these solutions. Water usually does not cause any reaction (though sometimes it does). If a patient reacts to the KCL solution, that suggests that their bladder wall is damaged and that they may be an IC patient. (link here to KCL info) If patients have any reaction to the potassium, then a third "rescue" solution containing heparin and an anesthetic (lidocaine) is quickly instilled into the bladder to relieve any symptoms the potassium may have caused. Some feel that the test might be unduly painful or uncomfortable. At Scripps Clinic, we take care to recognize any reaction to potassium quickly and stop that part of the test immediately if a reaction occurs. We have found that the test really only causes minimal discomfort, especially when compared with the classic diagnostic test for IC - cystoscopy with hydrodistention.

http://www.ic-network.com/guestlectures/kahn.html

[Laurie248]

Hm. I would consider this test, VM. Have you had it? Has anyone here had it? It doesn't sound quite as invasive....???

Curious,
Laurie

[vm]

I have not had it, but I know others here have. If you survived an in office cystoscopy you could do this one. :)

[IC SARAH-CPP]

Wow, no offense Laurie, but you are even more high strung than I am!! I am always getting teased by my hubby because I "stress" out over things so much, glad to know there are others out there like me!!
I dont really think that a cysto is an invasive procedure. I mean yeah, they go in, but it really isnt a big deal. Your doc was probably saying to put you out because the procedure would hurt way more if you were already experiencing a lot of pain in your bladder. I was really freaked for mine but as I was walking out, I told my husband, that was nothing!! We even went out to a really nice dinner after wards and I felt fine. and I had no sedation or pain med or anything. He was in my bladder for about 30 mins, which he said was really long!! Hey, to make you feel better ( i know it made me feel better when I heard) they do this test TO MEN!! can you imagine cramming that tube up their pee-pee hole??? I told my hubby and then laughed like heck while I watched the look on his face!!
I hope you guys can work this out, your uro sounds really good. I wish mine was like that. Do you have a diagnosis of IC yet or not???
Love Sarah

[IC SARAH-CPP]

My uro told me that the potassium test is never ever used at Kaiser because he said it is known as the worst pain someone with bladder problems could ever feel??? Hmmm, maybe I am thinking of something else VM?? It isnt supposed to be bad???Maybe he was tricking me again!!
Love Sarah

[vm]

I think it hurts when they instill the potassium, but then they immediately instill something to take away the pain.

[Laurie248]

Hm. I'll talk to my uro about this test for sure.

Also, maybe I wouldn't necessarily need to be put out for the cystoscopy and I could talk to my uro about that??? I mean, why on earth did I need an IV with diprivan for this? Is it not possible to numb that area some other way? Where I'm awake, maybe??? Do I HAVE to have anesthesia?

I'll also mention the K+ test to him as well when we next speak. VM, was it that bad? Can they diagnose IC that way?

Sarah - No, no diagnosis yet....today's procedure was supposed to do that, I guess, but clearly, I didn't make it through. : ( There's got to be SOME way that's more doable for me to get a diagnosis. If I continue to be panicked like this I'll NEVER find out what's wrong....!

Laurie

[VickiB]

Hi Laurie,

I was diagnosed by the potassium sensitivity test. Really, it isn't that bad! The pain was not unlike one of my IC flares. Only instead of slowly building in intensity like my normal flare does, the pain came on instantly, but it also ended just as suddenly. It maybe lasted two minutes in all! -A walk in the park in comparison to a flare! I was a little bit sore for the next day or so, but nothing I couldn't live with.

The worst part for me was the insertion of the catheter. In hindsight, that may have been partially my own doing because I was very nervous and 'tight' down there. I've heard others say if you relax it isn't near so painful.

Good luck on whatever you try. It does sound like you've got a wonderful Uro!

Vicki

[Laurie248]

Hi Vicki:

Well, I just called my urologist. He wants me to keep a "log" for the next 3-4 weeks of everything I eat, do, behavior, sexual activity, pain levels, etc. and then we'll meet again on March 25th to discuss next steps.

I asked about the K+ said and he said he refuses to do that test because it's "inhumane". He said it's like getting a cut shaving in the shower and then putting rubbing alcohol on it. He said it's just barbaric.

Ugh. What to do?!?!?! I don't think there's ANY way I'm going to be able to go through with the cystoscopy. Aren't there ANY other options?????

Thoughts?
Laurie

[ICNDonna]

Laurie, one thing you might discuss with your doctor is putting you on a tranquillizer for a while to help you get calmed down so you can have your testing. It may be that you will need to see a counselor to help you deal with panic attacks.

Warm encouraging hugs,
Donna

[Stephanie2004]

I was diagnosed by the potassium sensitivity test, and the pain was indeed like pouring alcohol on a cut, BUT it only lasted maybe fifteen seconds. As soon as I reacted, the NP said, "Let's get that out of there", then put in the rescue solution. My doctor uses this test, because she thinks it's more humane than hydrodistention. It was quick and I had no problem driving myself home and getting on with my life. For a couple of days afterwards, my bladder was just a bit flared, but not too bad. I'm glad I had the PST because it gave an answer with a minimum of after-effects.

[donutgirl]

Laurie, I would suggest you call the doctor's office & possibly get something for your nerves tonight. Waiting for any procedure is always the worst part, I think. I think the potential benefits of the procedure will probably be worth it to you. As Donna said above, you will have an answer to your bladder problems and with the biopsies will be able to rule out cancer. I know my first urologist mentioned the possibility of bladder cancer and I was so relieved to hear that was not the case. Also, after the procedure I had 4 months of decreased pain. I had been bedridden prior to that point. I have another procedure scheduled for next Friday in hopes that I will again get the relief. My oldest daughter has anxiety attacks. My suggestion to you, try to lie down in a room w/ the lights dimmed....play some relaxing music and try to just focus on relaxing. Good luck!!!!!!!! I wish only the best for you during and after the procedure!

DIANE