Question

[Dakota]

I've done a lot of reading about cysto/hydro here. It's got me to thinking about something. About three years ago I had what I thought was a cystoscopy, biopsy and dilation. I was in my urologist outpatient department, and this was done under anesthesia. I was told that was what the procedure was, but I am now wondering if he did do a hydro on me, and I am not aware of it. I do have pictures of the inside of my bladder. Would I have them if it was just a cystoscopy? I can't just ask him because I no longer see this doctor as he gave me a diagnosis of chronic cystitis (whatever that means) and would do nothing but give me Prosed. I have since returned to the doctor that originally agreed that I have IC. I'm really wondering now, if it was just a cystoscopy would I actually have the pictures or is that only possible with a cysto/hydro? :confused:

[kadi]

I've never gotten any photos from an in-office cystoscopy. I did get photos from the cystoscopy/hydrodistension.

[Briza]

I've done a lot of reading about cysto/hydro here. It's got me to thinking about something. About three years ago I had what I thought was a cystoscopy, biopsy and dilation. I was in my urologist outpatient department, and this was done under anesthesia. I was told that was what the procedure was, but I am now wondering if he did do a hydro on me, and I am not aware of it. I do have pictures of the inside of my bladder. Would I have them if it was just a cystoscopy? I can't just ask him because I no longer see this doctor as he gave me a diagnosis of chronic cystitis (whatever that means) and would do nothing but give me Prosed. I have since returned to the doctor that originally agreed that I have IC. I'm really wondering now, if it was just a cystoscopy would I actually have the pictures or is that only possible with a cysto/hydro? :confused:

Hi :hi:
This is just my own personal experience and from quite a few years of reading other's here on the board:

I had cysto/hydro w/ biopsy under general anesthesia in outpatient OR hosptial setting.

I have not had "just" a cystoscopy, neither the usual in office cysto (no anesthesia given) nor "just" a cysto under anesthesia as outpatient surgery (whether it be in OR hospital setting or in a uro's office that is equipped for such things...most aren't but some are...sounds from your post that maybe your former uro was equipped and had his own facility in his office to do such things under anesthesia??)

My experience was that it was mainly the extreme Vulvodynia and VV symptoms I was having at the time was what made the uro who did my cysto/hydro and myself determine that extreme pain from being cathed while awake, extreme dr anxiety/panic attacks and such made having EITHER just a just a cysto OR the more extreme cysto/hydro under general anesthesia in OR outpatient best for me at that time. I say "just a cysto" for me because we discussed in length many times prior to the procedure whether she was going to actually distend my bladder or not...I did not want my bladder to be distended. I was more concerned about the distenstion causing problems than anything else and we decided that the distention would ONLY be done if she thought necessary. But that the cysto and biopsy would be done regardless if she thought necessary to distend or not. Ended up she did distend...but that is a whole 'nother story...

Since I have not had just a cysto in office, I cannot say if they usually take pix or not...tho I do know from what uros have told me and what I have read from others here that when in office for wide awake cysto that there is at minimum a monitor that both patient and dr can see while dr is doing the cysto that shows what the bladder wall looks like with just a bit fill of water to expand the bladder, but not to overdistend it. Whether pix are or can be taken during an in office cysto, I dunno, but for sure there is a monitor where both dr and patient can see.

As for being under any kind of anesthesia, whether hydro is done or not, then absolutely yes in that situation pix can and should be taken! Unfortunately, many times the dr will only take ONE set of pix for the patient's file. In my experience it was necessary for me to insist insist insist and remind remind remind the dr and the nurses and the anesthesiologist to make a copy for ME! I did not get my own copy after pelvic laparoscopy and was so disappointed....so when I went in for cysto/hydro I made sure that no one forgot that I wanted my own copy...if patient doesn't ask for this and if dr doesn't normally provide this, then the dig pix are going to be deleted/not saved, and patient will have a real hard time getting their own copy for their own personal files, which can be very helpful to have in your own file, esp when seeing new to you drs

this is getting kinda long so I am going to post it now before I get knocked off board but will continue in next post.:)

[Briza]

I've done a lot of reading about cysto/hydro here. It's got me to thinking about something. About three years ago I had what I thought was a cystoscopy, biopsy and dilation. I was in my urologist outpatient department, and this was done under anesthesia. I was told that was what the procedure was, but I am now wondering if he did do a hydro on me, and I am not aware of it. I do have pictures of the inside of my bladder. Would I have them if it was just a cystoscopy? I can't just ask him because I no longer see this doctor as he gave me a diagnosis of chronic cystitis (whatever that means) and would do nothing but give me Prosed. I have since returned to the doctor that originally agreed that I have IC. I'm really wondering now, if it was just a cystoscopy would I actually have the pictures or is that only possible with a cysto/hydro? :confused:

Hi :hi:
This is just my own personal experience and from quite a few years of reading other's here on the board:

I had cysto/hydro w/ biopsy under general anesthesia in outpatient OR hosptial setting.

I have not had "just" a cystoscopy, neither the usual in office cysto (no anesthesia given) nor "just" a cysto under anesthesia as outpatient surgery (whether it be in OR hospital setting or in a uro's office that is equipped for such things...most aren't but some are...sounds from your post that maybe your former uro was equipped and had his own facility in his office to do such things under anesthesia??)

My experience was that it was mainly the extreme Vulvodynia and VV symptoms I was having at the time was what made the uro who did my cysto/hydro and myself determine that extreme pain from being cathed while awake, extreme dr anxiety/panic attacks and such made having EITHER just a just a cysto OR the more extreme cysto/hydro under general anesthesia in OR outpatient best for me at that time. I say "just a cysto" for me because we discussed in length many times prior to the procedure whether she was going to actually distend my bladder or not...I did not want my bladder to be distended. I was more concerned about the distenstion causing problems than anything else and we decided that the distention would ONLY be done if she thought necessary. But that the cysto and biopsy would be done regardless if she thought necessary to distend or not. Ended up she did distend...but that is a whole 'nother story...

Since I have not had just a cysto in office, I cannot say if they usually take pix or not...tho I do know from what uros have told me and what I have read from others here that when in office for wide awake cysto that there is at minimum a monitor that both patient and dr can see while dr is doing the cysto that shows what the bladder wall looks like with just a bit fill of water to expand the bladder, but not to overdistend it. Whether pix are or can be taken during an in office cysto, I dunno, but for sure there is a monitor where both dr and patient can see.

As for being under any kind of anesthesia, whether hydro is done or not, then absolutely yes in that situation pix can and should be taken! Unfortunately, many times the dr will only take ONE set of pix for the patient's file. In my experience it was necessary for me to insist insist insist and remind remind remind the dr and the nurses and the anesthesiologist to make a copy for ME! I did not get my own copy after pelvic laparoscopy and was so disappointed....so when I went in for cysto/hydro I made sure that no one forgot that I wanted my own copy...if patient doesn't ask for this and if dr doesn't normally provide this, then the dig pix are going to be deleted/not saved, and patient will have a real hard time getting their own copy for their own personal files, which can be very helpful to have in your own file, esp when seeing new to you drs

this is getting kinda long so I am going to post it now before I get knocked off board but will continue in next post.:)

[Dakota]

Hi Bri

Thanks so much for responding. I just want to make it clear that I had this done in my Urologists outpatient clinic. It was not done in his office. In fact I was intubated which came as a shock as I wasn't even aware that would happen. I guess my question should read, is it only possible to get pictures of the inside of the bladder with a hyrdo?

[Briza]

lol got knocked off board anyway...

Ok, I am going to try to stop rambling here....

IMHO>>I absolutely believe that pix can, will, should, are taken (whether it be just one copy for drs file or with an additional copy or the patient, like you have) whether it was just a cysto/biopsy/urethral dilation like you had, or the same along w/ a hydro.

As for not being able to contact that former uro...well, yes you can. You can either call or go into the office and ask for JUST the post op reports to be given to you (usually there is a fee for getting copies of your records if you ask for your entire file, but my experience has been that if I ask for copies of only any post op/procedure/biopsy reports that they have given them to me at no cost).
Also, if ANY of your current drs (not you) request any of your previous med records from former drs then that will be done at no cost to the patient. It is considered a courtesy among drs to provide your entire file, or any parts of it, if another dr requests it. Doing it that way can will avoid your having to deal with former drs that you would rather not deal with...if that is the case. All that needs to be done is to tell your current dr(s) to have their office manager or nurse call the other dr and request your file or certain records/reports, if your current dr or the office manager/nurse does not take it upon him/herself to do so.

Sorry for the ramble...my POINT is lol...that your records from the cysto/biop/dilation will show all that went on during that procedure...whether you were distended or not, if so how much, etc. Also it is important that the biopsy pathology reports are received by your current dr(s).

Again, sorry for the ramble, I have been in pain all day...I hope this answers any of your questions!!!:)

[KarenAnne]

Since the actual scope itself is used for the cystoscopy with & without hydrodistention, I imagine you could still take pictures either way. But if you were intubated, meaning you had general anesthesia, then I would think your bladder was overdistended. That part of the procedure is usually too painful, & the urologist & anesthesiologist would have wanted to make you comfortable. So my guess is that you had the hydro. But to definetly find out, you can always write & request your operative report records from the doc.

[Briza]

Hi Bri
is it only possible to get pictures of the inside of the bladder with a hyrdo?

No, you should be able to get pix of inside of bladder whether hydro is done or not. It is general belief that the BEST pix are gotten when taken during a hydro. But absolutely, pix of bladder CAN be taken while having a cysto without the hydro! I'm gonna stop now cuz the pelvic pain I have been in all day is obviously affecting my brain!
;)

[Dakota]

Bri and everyone,

Thanks so much for responding and your info has been helped me understand it a little better. :) This has always bothered me, and your suggestion about getting my records transferred makes sense. Even though I do have the actual pictures in my file, I do not have any kind of written report about that procedure. :confused: I really did not like this doctor because he never gave me an answer to questions. He would just rattle on about how I should increase the acidity of my urine! I kept thinking holy cow this doesn't sound right to me. :mad: Nothing he said made any sense and he was not a compassionate doctor. I remember sitting in his office with tears streaming down my face because his techs had just catheterized me and I was in so much pain. He just gave me a strange look and sent me on my way with another script for Prosed. I appreciate your taking the time to answer even though you're in pain at the moment. I am too, and I need to get off this computer. :lmao: I hope the pain lets up for you soon.

Best,
Dakota

[Briza]

But if you were intubated, meaning you had general anesthesia, then I would think your bladder was overdistended. That part of the procedure is usually too painful, & the urologist & anesthesiologist would have wanted to make you comfortable.

I see KA's point :) and absolutely being overdistended is over the top painful and not something to be done without anesthesia, but then there are also many here that report an in office cysto being over the top painful...and something they'd rather not go thru again without being knocked out, even if if a cysto is not as traumatic to the bladder as a cysto/hydro. Recovery time doesn't seem to be as long for just a cysto as with a cysto/hydro, but really painful nonetheless for many. Luckily most don't seem to have to go thru more than one in office no anesthesia cysto!

BUT, seems like pretty much the norm for drs, whether doing hydro or not along w/ a cysto, to put patient under general anesthesia for the other things that you had, Dakota, that can be pretty painul, too...like biopsy and urethral dilation. OUCH...so I really I don't think you will know anything for sure about whether you were distended or not until you have copy of post op and biopsy path results in your own hands....but I wouldn't assume that you had the hydro...b/c biopsy and urethral dilation seem to be most often done under anesthesia...whether hydro is done or not....just most times hydro is in the plans as well for most patients, but that doesn't necessarily mean that you had a hydro...make sense?;)

[Dakota]

Yes Bri that makes a lot of sense. Now go and rest. :smile tee I'm calling next week to get those records.

[bruegelfan]

Geez, I had mine done a week ago and my doc's nurse told me that they kept the only set of pictures. But, could give me a photocopy.....I'm assuming black and white. What a bummer!

[un0seeme]

Hi All,

Hope everyone is feeling a bit better today. Had a pretty smooth day myself!

I just realized I could ask for pictures of my bladder during the hydrodistension done in May. My doctor took 4 pics. One was the bladder before distension. The other three were of different views after distension. What I realized was that without distending, the bladder looks normal. It was only under distension that you could see what the problem was.

And for those of you afraid of the recovery after distension, read this. I have now had five distentions and after the first four, I was in excrutiating pain. Lo and behold, this time I was virtually pain free for an entire 24-hour period. Why? They gave me Fentanyl in the recovery room. Amazing stuff. You really MUST insist on it if you get it done. it made all the difference in world.

Good luck with getting a better doctor!

[Dakota]

Hi everyone
I just wanted to say that I finally did it. I called about getting copies of my records, and they told me I had to come in, and fill out paperwork, and there is a $10 charge for the copies. I did it this morning, and have requested all my records from the very first visit. It should amount to quite a bit of paperwork as he did so many tests and urine cultures over a two year time period. They will call me when they are ready. I'm hoping I'll have a better understanding of things once I get to sit down and read it all! :)

[Dakota]

I just want to let you know that I picked up my copies this morning. I couldn't wait to get home and read them. I did not have a hydro, just cystoscopy and dilation. After I got through that part I went on to read that the diagnosis read as Trigonitis. I really almost fell of my chair because I was never told that by this Urologist. Now I'm beginning to think maybe I should push for a hydro from the Urologist I'm seeing now. He told me I have IC based on my symptoms and results of my urine cultures. :confused: I find that everything I read on Trigonitis is very vague. Anyone have any thoughts or ideas on this? Bri looking for some of your always very wise advice. :)

Best,
Dakota

[un0seeme]

Hi Dakota,

I haven't heard of Trigonits. Hopefully you can find some info on the web. The one thing that I want to point out is that I don't believe you can diagnose IC through urine cultures. It is not a bacteria or virus. It is a condition of the lining of the bladder. Again, I was told by two urologists that I trust that the only real way to diagnose is through hydrodistention. I am not a doctor, but I think you really should ask for one...with photos that you can take with you and Fentanyl in the recovery room. We can only pray that in fact you don't have IC. I wouldn't wish this on anyone!

Good luck to you!

[Dakota]

unOseeme - Thanks for your response. I know it is not possible to diagnose IC through a urine culture. Mine always come back abnormal because I have oxalate crystals and a high amount of WBC, but never any bacteria. I was diagnosed with IC after many tests and three procedures for removing kidney stones. The uro I was seeing at that time diagnosed me on my symptoms, and said there was no need to do further testing. The uro that did the cystoscopy and dialation was a doctor I had gone to for another opinion at that time. I do know that a cysto/hydro can prove you have IC, but it does not disprove it either. As for Trignonitis, I have read it is diagnosed very frequently before the IC diagnoses. It's a red inflamed area at the base of the bladder. I've since gone back to the first Uro that diagnosed me, and he refused to do any further testing because he did not want to cause me any more pain. He also said the abnormal results of my urine tests and cultures are proof enough for him. And you're right, I would not wish this on anybody else. I'm praying for a cure for everyone who suffers this horrible disease.

Best to all,
Dakota