cystoscopy with hydrodistention is different than an office cysto

[profhucklebee]

Hi all! I went in yesterday for a cystoscopy with hydrodistention, and my uro said that the previous in office cystoscopy was totally barbaric, and not nearly as useful as the cysto with hydro.
He actually went so far to say that an in office cysto is a waste of time for most people.

I had an in office cysto 6 years ago, it was REALLY OUCHIE! The people on here that have said they were no big deal must have incredible pain thresholds! Yesterday every single person who I told that I had an in office cysto before said "OUCH" or "WOWZA! THAT must have HURT!"

I finally started asking the medical staff "if everyone knows that they hurt that bad, why on earth would a doctor do it?" The answer: cheaper than hospitalized cysto.

My uro said that unless you are asleep, the uro can't sufficiently fill the bladder enough to see most of the perforations and damage to the bladder walls. He said an in office cysto is mostly only good for ruling out tumors and/or major infections. Technically you must be under anesthesia for a true diagnosis of Interstitial Cystitis... has anyone else heard this? It seems like very significant information if it is true.

I had the cysto, hydro, and bladder biopsy. I think I told the anesthesiologist that I loved him when he took out the intubation tube! LOL Oh well. I have been married to the same man for over 17 years, so I guess one little indiscretion while under the influence won't spell much trouble for me! Hehehe

The uro came into the recovery room after I came to, and he handed me a DVD, and several glossy photos of my procedure. It was very interesting! He said everything they were looking for, they found. And they definitely were generous with pain medication... unlike the office bozo that did me before!

I had a tiny moment of tears in the car on the way home. This, I suppose, is the answer we were looking for. I definitely have IC. While it’s frustrating and feels kinda like I was just slapped both cheeks and kicked in my buttocks... I suppose it will take a little time for my denial to wear off.
It’s a double edged sword... getting the final diagnosis. Basically at least now I know for sure... but then again, now I know for sure and there's no cure.

All these eight long years I wanted to believe it was stones, or a weird tweaky urinary tract. But no... It’s an angry ouchie bladder, and that's all there is to it.

I guess I am ready to join the IC club... my jacket size is XL, and I guess I should ask for a zipper pocket for my walking pharmacy... because the way it looks now, medication is my new redeemer.

Thanks for being here, and for all the encouragement and support this website represents for all of us looking for answers and a sense of not being alone.

I'm off to pop some Vicodin. Have a great day!

ps) The only really sweet thing that came out of this is that my hubby bought me a new Sabona bracelet. He told me he wants me to not give up my golfing and he loves me regardless of what my insides look like under a microscope… aww! How sweet.

[RWadeJ]

It sounds like you have a very good uro now. I agree with what they've said.

I also had an in-office cysto done (3 years ago) and I swore NEVER AGAIN! I honestly would rather go through labor and childbirth than another one of those. It was SOOOO painful for me.

The uro I'm seeing now says the same as yours. They won't even do in-office cystos on someone they even suspect has IC. And they said the same thing, they just cannot stretch the bladder during an in-office cysto the way they can under anesthia, thus gathering alot more valuable information and a definite IC diagnosis.

I'm glad you got through yours cysto/hydro OK. I'm going to have mine done in 2 weeks! I'm nervous, but like you, I just really want some answers.

I understand where you're coming from!

[Sarojini]

Yep... it's true. The signs of IC rarely show up on an in-office cysto. Most doctors feel the cysto/hydro is the way to go as a result.

[jen74]

I had an in office cystoscopy and it was very painful, the worst pain I ever felt. Well, when I went to see a different urogyne, he also did a regular cystoscopy, but I insisted being sedated and he had no problem with that. I was diagnosed with IC with just the regular cystoscopy. He said my bladder was severely inflammed which is typical of IC. I would hate to have seen what my bladder would have looked like if I had done a hydrodistention. I think they should always sedate while doing cystoscopies. I mean they sedate when they do colonoscopies and upper endoscopies.

Jen

[ICNDonna]

I have had at least two office cystoscopies --- the first was part of the "ruling out" process of diagnosing my IC. It wasn't fun, but not horrible either. I also had a cysto before I had a Raz procedure for stress incontinence. It wasn't bad either and was a necessary part of diagnosis.

Donna

[karen10]

Old, old, old news!!! Doctors - get the update!!! There's some really good articles found on this site about how to diagnosis IC. Cysto/hydro of ANY kind isn't it! Here's a part from the first transcript:

JILLOSBORNE - This brings up a popular question, the role of hydrodistention in the diagnosis of IC. There are still some providers who insist that patients must have a hydro before they will be diagnosed with IC. Your thoughts.

Dr. Rosenberg - LOL! I was lecturing to a group of urologists recently and I was showing them data on an evidence based approach to the diagnosis of IC, and I showed them a lot of data saying that there is no diagnostic value to a cystoscopy and hydrodistention. The only value of cysto/hydro MAY BE limited therapeutic benefit in the occasional patient. So, the urologist who asked a question about it got very upset with me

“You can’t tell urologists not to do cysto/hydros because we bill for those.”{ I answered "If that is the best that you can come up with, that is pathetic." I am writing a paper right now that will be published in October in the Cleveland Clinic Journal of Medicine where I will reiterate that exact thought.

I'll take this one more step. If I had a doctor recommend a cysto/hydro for a patient to make a diagnosis for IC, I would run the other way. Again, it may have therapeutic appeal, but not diagnostic. I also sit on the credentialing board for two major insurance programs in Michigan and I have advised both of them that they should no longer reimburse for those procedures without a explanation from the physician as to why that is to be performed.


Here's the links:

http://www.2006icpatientconference.com/rosenbergtranscript.html

http://www.ic-network.com/md/OP371a_8_28.pdf

[ICNDonna]

I am one who is helped by hydrodistentions and I will always be grateful to my urologist for suggesting it might help.

Donna

[HGC]

I am also helped by hydrodistentions and have had 11 of them in the past 16 years. As long as they continue to help me I will continue to have them.

[sadie9699]

this is a little upsetting to me. I've got a regular office cysto scheduled for the 18th, so basically, it may show something, but i could still have it , and it won't show it.(sigh)...what would my next step be if it doesnt show anything, a cysto with hydro..., does that usually show ic? i'm so confused.

[karen10]

Mercedes, please read my earlier post and click on the links to the articles that Jill has posted on this website! They are VERY informative and also good to take to your doctor.

I know many urologists are still saying cysto/hydro, but that's NOT the current trend for most IC experts. They still can be useful for treatment, like Donna said--they can be helpful for some, but NOT for diagnosing, especially early IC.

Ask about the PST (Potassium test) and take the PUF. Here's another website to go to: http://drlowellparsons.org/wst_page2.html

Keep researching, you will find your answers! Jill has all the latest research here too, so read through all the articles on this site (may take you days! :) ), and make sure you check the dates. Things have really changed in the past few years!

[sadie9699]

I've been trying to research, but like you said, it can take days, and sometimes leave me feeling just as confused, lol...i'm guessing that they do the cysto to rule out other things that it could be? do you all feel that you should have done the cysto, did it ease your minds knowing it wasn't something else?
I have taken the puf online, and got a fairly high score, it was in the 30"s, but the dr has not mentioned this. i think we are in the ruling out phase...
i guess i am just nervous that i will go through all this testing, and they still "wont know"...because there seems to be no definitive test for this. sometimes they can see it, sometimes they can't. am i right in that thinking?
do you all find the pottasium test to be accurate in diagnosing, or is that also a test that could show either way? I am off to read a few articles. thank you for the reply and the links, it's very helpful:)

Mercedes, please read my earlier post and click on the links to the articles that Jill has posted on this website! They are VERY informative and also good to take to your doctor.

I know many urologists are still saying cysto/hydro, but that's NOT the current trend for most IC experts. They still can be useful for treatment, like Donna said--they can be helpful for some, but NOT for diagnosing, especially early IC.

Ask about the PST (Potassium test) and take the PUF. Here's another website to go to: http://drlowellparsons.org/wst_page2.html

Keep researching, you will find your answers! Jill has all the latest research here too, so read through all the articles on this site (may take you days! :) ), and make sure you check the dates. Things have really changed in the past few years!

[jen74]

When I had a in-office cysto, actually I was sedated, I asked to be sedated since it caused me pain in the past to have it done awake, anyhow, I was diagnosed with IC through the cystoscopy. My bladder showed that it was severely inflammed. I did not have to go through a hydro. I actually refused to do the hydro. my gyne and my gastro doctor both told me that they would not reccomend I do it. My gyne said that it is not as accurate as they say in terms of getting a good diagnosis. It is just the gold standard is all, meaning it is all they have right now. As in terms of getting relief from it, well everyone is different. Donna has gotten relief from it as well some others, but then there are ones who have no had success with it and ones who have gotten worse.
I have ALOT of pain with my IC. It is unbearable at times. I could not imagine having my bladder stretched beyond it's capacity which would likely only inflict more pain on me. In my mind, it is not normal to stretch the bladder like that in anyone, let alone a person with an already damaged bladder. That is just my opinion though.
I am not saying I will never have a hydro. I mean it is just a last resort for me, meaning after I have tried all other avenues first. Good luck in what you decide to do.
Jen

[karen10]

OMG! That's a really high PUF score!! With that score, my doc does a complete hx, any labs to rule out infections, and then the potassium test (Parson's research found it to be 96% accurate). My doc puts people on IC tx when they have a score of 10 or higher, and score positive on the potassium test. If they respond to the tx, then they conclude it's IC, if not then they do further tests. She starts bladder insillations and gives them the option of starting Elmiron.

[profhucklebee]

I appreciate all the information... my follow up for my cysto with hydro is this:

I went into a complete 10 day flare, as a result of the cysto with hydro done under anesthesia. They also did a bladder biopsy... and this I think is also a contributing factor for why I have been in such a bad way the last week and a half.

Literally I wasn't even out from under the anesthesia and I was at a pain level that was ~7/10. They gave me narcotics through the IV, at the point when I could speak enough to tell them that I was in serious pain, and I have hovered at between a 5 and 7 ever since--for the last 10 days.

However, that said, my particular urologist insisted upon doing a bladder biopsy, and for that I am quite thankful. One of the issues we were considering was whether or not I was having a long term chronic infection, and the bladder biopsy ruled that out.

At first I was kind of mad that I had the cysto with hydro, to be honest it really ****** me off that the doctor would do that to me, "just for diagnostic reasons"... however, I think after a week of dwelling on it, I can see that there was a whole other side to it, and that would be the side that says: let's make SURE that it isn't something ELSE.

The urologist I am currently seeing is determined NOT to prescribe narcotics... and told me so from the first visit. He also did prescribe for me narcotics post operatively, and he also did have a frank discussion with me today at my follow up visit. He personally has known of, seen, and dealt with more people addicted to narcotics with IC than any other condition... and he has decided that for him and his practice, narcotics are a last stop.
He will not prescribe with refills and he will not prescribe multiple times.
Narcotics do build up in your system, and you do have to take more and more narcotics over time to get the same pain relief. He has a point, why take away the one option that would become imperative if/as pain progresses? I have taken low doses of vicodin on and off for the past 3 years, and I personally noticed a HUGE difference when I had gone 6 months without narcotics when they were taken after this most recent procedure.

I think that a doctor's decision to recommend cystos w hydros should be evaluated on a case by case basis, and it’s not a "one size fits all" scenario.

My uro promised me that we wouldn't ever have to do another one, as long as nothing significantly changes. He video taped the cysto, took lots of pictures, and he provided me with my own copy of both items, thus I ALWAYS will have my own personal record of my history regarding this disease (he keeps his records, which other doctors can access at my permission, but this way I have my own information if I ever need it). He also said that glomerulations are merely ONE thing that he looks at when he does cystos. He said there is no correlation between the amount of glomerulations and pain levels... and if a patient presents with no glomerulations, that is not really a precise indicator of IC or not.

An important distinction: You can have IC without glomerulations, but you can't have glomerulations and not have IC.

The other thing that the cysto/bladder biopsy reveals is mast cells. I personally had a LARGE percentage of mast cells, and that revealed information that we previously did not have. That tidbit of information led us to yet another medication, which I have yet to sample... turns out that our local pharmacies don't carry that "special" drug, and I will have to wait a few days for them to get it in for me... GREAT! I live in a highly populated area... so this didn't seem to bode well with me.

Anyhow, I just thought I would follow up on this thread and let you know what I am learning. Forgive me if it was too long or too much information.
However, I think we are all learning, and as we learn, we share, and as we share, we gain insights and since we are all painfully aware that there is no current cure for this disease, all we can do is work from a place of continuing education.

I need educating, and thus I am so thankful for all you wonderful people for pioneering and treading out these issues before me.
Let us not loose sight, in our pain and frustrations that we are all at different stages and we are all mere people working with other mere people to find answers and solutions to a very ambiguous disease that does not treat us all the same...

Thank you for your help and continued information!
Keep us posted as you learn more, PLEASE!

I have to tell you that it’s a huge burden lifted for me to know I am not alone and for that more than anything else I have my urologist to thank, as he was the one that recommended that I check out the Interstitial Cystitis Network for more information. I guess I can forgive him for putting me right in the center of a BAD flare… this time.:rolleyes:

[karen10]

I'm glad it all worked out for you, and even in your pain, you were able to see some good behind it!

I hope that the trend continues to move away from painful procedures for diagnosing IC, as it already is. I like the mentality "if it looks like a zebra, treat it like a zebra." I did not have all the extra tests done, and my doctor and I began treating my IC based on history, neg labs, PUF, and PST. Several months later, I'm doing better, so we know it's IC as it's responding to treatment.

I am also a big believer in partnering with my doctor on behalf of MY health and contribute with doing my own research and suggesting my own treatment. I just get so angry at these arrogant doctors who won't listen when we are the experts on our own bodies.

I hope they soon find an easier way to diagnose IC 100% in a way that is much more humane and doesn't have the potential to cause further damage! :)

[RWadeJ]

Profhucklebee - what is the name of the "special" drug you are going to try?

To the other poster, I don't know if its all about the arrogance of doctors. I think I can see their view, to. They really need to rule out everything else first, and if they are diagnosing just on symptoms alone, what if there was something else underlying that is going missed? I can understand why they'd rather do a cysto/hydro, though it is invasive. They can see what is going on in there, maybe help your treatment more by setting up a plan directly related to what they saw, and you also have a record of that as well for the future.

I can see both sides. You do have to be your own advocate, thats for sure.

-J

[sadie9699]

I've had a few arrogant dr's too. but finally found one who wants to do the cysto to at least rule out anything else, and then i guess we'll go from there. there are arrogant dr's out there though who will insist that you are in pain because you are stressed, depressed, whatever, without running any tests. i don't know if thats more arrogance or ignorance, but i am pleased that so many of you seem to have understanding dr's. :) and i'm glad i found someone who wants to figure out whats going on. :woohoo:

[profhucklebee]

Thank you Mercedes for the reminder!

I can only speak from my personal experience:

I have been struggling with this disease for 8 years, and in the beginning I had a doctor that did an in office cysto, but said he "didn't see anything". That was a HUGELY painful experience for me (in office cysto, no pain management). That uro gave me bottles and bottles of antibiotics and told me he didn't know what else to do.

Then I had a doctor that gave me bottles and bottles of vicodin, 'treating' IC pain, but only because I came to that second doctor with the first doctors ~suggestion~ that it might be IC.

Now I am in this other uro's practice, and if it took an under anesthesia cysto with hydro to get MY attention, then so be it. And the 'bonus' is that the biopsy and cysto proved I have IC... which is as much a diagnosis for MY head, as it is a ruling out/in for my uro.

For the first time I feel like I have some answers... not just a 'maybe' or 'possibly'. I started a different thread called "KUB and renal ultrasound", because I really think it was AMAZING that they can do that!! I had almost instant answers that ruled out significant issues that I (kind of) had myself convinced that doctors just hadn't looked for.

Perhaps a doctor should not use cystoscopy for diagnosis, but you know what: if a doctor does a cystoscopy, it does give some answers--it rules out some things. Bladder biopsy rules out other things. KUB and ultrasounds rule out other things. IVP rules out other things. Urodynamics rule out other things.
These are all answers.

And right now, I will take some answers... even if they aren't answers I wanted or answers I totally understand in the time being. I have lived with questions for 8 years, and very little answers.

The diagnosis of IC *confirmed with the cystoscopy* has been a two-by- four upside my head... no more pretending that I will outgrow the pain in my bladder, no more thinking that maybe its all in my head, no more wondering if they missed a kidney stone or a significant organic issue in my pelvis...

I have Interstitial Cystitis.

I was told 6 years ago I probably had Interstitial Cystitis, and only now, after 8 years, do I really believe it.

That answer, for whatever its worth, is a new thing for me, and now I have to decide how I am going to treat this disease.

It's a big wake up call for me, for my family, and for my doctors.

I was in pain BEFORE my cysto with hydro. I am in pain after my cysto with hydro.

The difference is that now I have a significant piece of the puzzle with which to gauge my past handling of this pain and the future handling of this pain.

[sadie9699]

I'm glad you have a diagnosis(not that you have ic), but that you have a real answer after all that time! I am nervous about the cysto, but i'm going to do it to rule anything else out. In a way, i'm hoping they DO see it with that, so i won't have to continue with painful tests. Mine is going to be in office too, he said he will "numb it", but i'm still nervous as all hell..but i know i have to do it, as many of you brave souls have, to find something out!
I'm sorry that you went for 8 years not knowing,that's an awful long time! how is your dr now? what do you use for pain management? i am going to look up renal ultrasound next, lol. i learn a new term everytime i log on. i wish you the best of luck and the best of health!


Thank you Mercedes for the reminder!

I can only speak from my personal experience:

I have been struggling with this disease for 8 years, and in the beginning I had a doctor that did an in office cysto, but said he "didn't see anything". That was a HUGELY painful experience for me (in office cysto, no pain management). That uro gave me bottles and bottles of antibiotics and told me he didn't know what else to do.

Then I had a doctor that gave me bottles and bottles of vicodin, 'treating' IC pain, but only because I came to that second doctor with the first doctors ~suggestion~ that it might be IC.

Now I am in this other uro's practice, and if it took an under anesthesia cysto with hydro to get MY attention, then so be it. And the 'bonus' is that the biopsy and cysto proved I have IC... which is as much a diagnosis for MY head, as it is a ruling out/in for my uro.

For the first time I feel like I have some answers... not just a 'maybe' or 'possibly'. I started a different thread called "KUB and renal ultrasound", because I really think it was AMAZING that they can do that!! I had almost instant answers that ruled out significant issues that I (kind of) had myself convinced that doctors just hadn't looked for.

Perhaps a doctor should not use cystoscopy for diagnosis, but you know what: if a doctor does a cystoscopy, it does give some answers--it rules out some things. Bladder biopsy rules out other things. KUB and ultrasounds rule out other things. IVP rules out other things. Urodynamics rule out other things.
These are all answers.

And right now, I will take some answers... even if they aren't answers I wanted or answers I totally understand in the time being. I have lived with questions for 8 years, and very little answers.

The diagnosis of IC *confirmed with the cystoscopy* has been a two-by- four upside my head... no more pretending that I will outgrow the pain in my bladder, no more thinking that maybe its all in my head, no more wondering if they missed a kidney stone or a significant organic issue in my pelvis...

I have Interstitial Cystitis.

I was told 6 years ago I probably had Interstitial Cystitis, and only now, after 8 years, do I really believe it.

That answer, for whatever its worth, is a new thing for me, and now I have to decide how I am going to treat this disease.

It's a big wake up call for me, for my family, and for my doctors.

I was in pain BEFORE my cysto with hydro. I am in pain after my cysto with hydro.

The difference is that now I have a significant piece of the puzzle with which to gauge my past handling of this pain and the future handling of this pain.

[rachdfw]

When I had a in-office cysto, actually I was sedated, I asked to be sedated since it caused me pain in the past to have it done awake, anyhow, I was diagnosed with IC through the cystoscopy. My bladder showed that it was severely inflammed. I did not have to go through a hydro. I actually refused to do the hydro. my gyne and my gastro doctor both told me that they would not reccomend I do it. My gyne said that it is not as accurate as they say in terms of getting a good diagnosis. It is just the gold standard is all, meaning it is all they have right now. As in terms of getting relief from it, well everyone is different. Donna has gotten relief from it as well some others, but then there are ones who have no had success with it and ones who have gotten worse.
I have ALOT of pain with my IC. It is unbearable at times. I could not imagine having my bladder stretched beyond it's capacity which would likely only inflict more pain on me. In my mind, it is not normal to stretch the bladder like that in anyone, let alone a person with an already damaged bladder. That is just my opinion though.
I am not saying I will never have a hydro. I mean it is just a last resort for me, meaning after I have tried all other avenues first. Good luck in what you decide to do.
Jen

Hello, Jen. I hope you're not experiencing a lot or as much pain as before. But my doctor (whom I highly recommend) actually said that that food allergies actually cause the lining of the bladder to "deteriate" (sp). As an example, I keep away from red fruit juices. They'll kill me! Eating too many eggs, yogurt is a big no-no. He actually gave me a list of possible foods and if I followed that list to a "tee" I'd be 100lbs but I believe in moderation and not deprivation so I don't completely go without, except for those red fruit juices. My doctor actually had me fill out some number thing and I scored like 30 and then he asked, if you had the chance to have sex RIGHT NOW, IN THIS MOMENT, would you and I said "HELL NO!" and he said, I don't have to do any type of examination on you, because i know you have it. So he prescribed my medication, Elmiron (sp), Elavil, 9 rescue sessions, pain management and then over the counter Prelief. I have gone in to his office few times for rescues. I now know how to self medicate when it starts to hurt. Drinking lots of water helps immensely!!!!

Anyway, I've been blessed with my doctor and I love him dearly for making my life easier and manageable. Hope this helps you some.

rachel
DFW

[Tura]

My IC specialist wasnt convinced of my other uro/gyns diagnosis after hydro/cysto so he wanted to do another. the pain after was much worse the second time and lasted and in fact my IC
:headbang::cussing: is worse. I mainly had urgency frequency and pain when in huge flare but now pain all of the time. I think if they help you wonderful but ill never have one again. My first didnt make me feel better.