How long does it take to get results back from bladder distention and cystoscopy?

[magicmothra]

On Friday I had the bladder distention with cystosopy performed. Previously I had tested positive with the potassium sensitivity test. However, what threw me off was that after the procedure on Friday, my doctor never once came to my side to tell me what he saw. The only person who did come was a nurse who then left for an hour and a half only to come back to tell me that I needed to schedule a 2 - 4 week follow up with my doctor and that she could not make this call anymore because she had been on the phone with his office but kept getting busy scehdules. When I asked her basic questions such as did anything look abnormal, she just stated you will have to wait until your two to four week checkup to find out and please make sure you schedule this appointment yourself. I must say I am alarmed that no one could tell me anything. Has this happened to anyone else out here or am I just being a bid edgy wondering what in the world happened?
:evilsmile
ANY HELP would be most appreciated.

[dg2901]

I dont think its abnormal to have to wait until the follow-up appt to get results from this procedure.
Dr's are on a tight schedule when it comes to their OR time, so my guess would be that your Dr had other patients that day--either in the OR or back at his office--and wouldnt/didnt have the time to sit and discuss the findings. Another thought would be that your Dr needs time to read over his findings thoroughly before disclosing information to you.
Its also normal for nurses not to be able to disclose information prior to the patient talking with their Dr.

You could always call the DR's office and leave a msg. Perhaps your Dr wouldnt mind discussing the findings over the phone.

Wishing you well..
Diana

[InolaC]

On Friday I had the bladder distention with cystosopy performed. Previously I had tested positive with the potassium sensitivity test. However, what threw me off was that after the procedure on Friday, my doctor never once came to my side to tell me what he saw. The only person who did come was a nurse who then left for an hour and a half only to come back to tell me that I needed to schedule a 2 - 4 week follow up with my doctor and that she could not make this call anymore because she had been on the phone with his office but kept getting busy scehdules. When I asked her basic questions such as did anything look abnormal, she just stated you will have to wait until your two to four week checkup to find out and please make sure you schedule this appointment yourself. I must say I am alarmed that no one could tell me anything. Has this happened to anyone else out here or am I just being a bid edgy wondering what in the world happened?
:evilsmile
ANY HELP would be most appreciated.
Let me start by saying I am new to this forum and newly diagnosed with IC myself as of 8/6/08 via cysto w/hydro so you may take my opinions with a grain of salt compared to many on this site who have much more experience. Were you under General Anst.? My personal opinion is there is no excuse for the doctor to not have at least a minimal consult with you and/or pre-authorized family directly following the procedure. The instrumentation used during a cysto w/hydro is directly connected to a viewing monitor or television as a guide for the Dr. and allowing the Dr. to take the appropriate pictures of the blemished areas they see fit. This allows the doctor to essentially have a "real time" diagnosis during the test as they are seeing it live obviously (no tests to wait for results). I strongly assume nearly all operating facilities have an on-site printer that they use to print up the pictures as well. I just find it hard to believe they are sending the data to another department/facility to be printed. When i had my cysto performed last wednesday i "came to" for a few minutes then i hazily remember my urologist coming in and handing me a copy of the photograph, pointing and saying "this is what IC looks like" and then told me She would be in touch with me the next day. Thats all that was said by her and she moved on to the next op. Granted the phone call from "her" the next day was really just her nurse and i recieved no further info. from her they just called to schedule my follow up; nonetheless, that 30 second sit down she had with me post-op gave me enough info to hold me over until my appt. Like you, i simply wanted some feedback about the procedure. Now it is possible i guess that the pinpoint bleeding and damage to my bladder wall was more severe and therefore more evident making it easier for a quick dx. However like i said the nature of test showing a live feed of your bladder means to me that even if the Dr. couldnt draw an immediate conclusion and decided the pictures required further study i would still fully expect to be told just that by the Dr. immediately following surgery. I have also had colonoscopy/endoscopys performed which are very similar tests in that they are using a tube with a camera for dx and in both cases i was given at least low quality pictures of my ulcers and at least a quick briefing from the dr. After my endoscopy the nurse had to repeat the findings to me because i didnt even remember seeing the doc but nonetheless. I certainly dont think that your dr.'s neglect to consult with you merits undo worry by you as Diana said the Dr.'s are very busy in the O.R. However i dont think there is any excuse for your dr. to not communicate the findings or lack there of to you immediately.(except in testing such as MRI's and such when the dr. isnt on site).At the very least you deserve to be told by the dr. that she requires more time to study her findings but no communication at all is unacceptable and its unfortunate simply because you now have to sit here and wander and play through all the scenarios in your head. Ive been there many times which is why i feel so strongly about this and im sorry you were put in this situation and i think your dr. deserves to know that the uncomtarble position you were put in is not appreciated. I believe you have every right to call and demand to speak with the dr. first thing monday to get some closure. I would be at her office at opening time monday but thats me. I just feel that you paid to have surgery to put an end to the wandering not to be told you have to wait 2-4 weeks to find out what the dr. already knows, sorry but you deserve some type of answers immediately after such a easy/conclusive test. Sorry for ranting i just get tired of the way people are treated because of the low standards in our medical system. Sorry for ranting but i will keep you in my prayers and hope all goes well. Please update or pm me when you do finally get the results. But certainly do not feel that you have to wait 2-4 weeks to speal with your dr.

[ICNDonna]

After my first hydrodistention, my urologist told my husband it looked like interstitial cystitis, but he wanted to see how I did after the procedure. He made the definite diagnosis after my second hydrodistention. That was back in 1975.

Donna

[Tuckersmom]

My Uro told me in the recovery room on the day of the cystoscopy with hydrodistention.

[anewday]

My urologist came out and told my husband- he had already told us that he thought it was IC before the procedure- after he told hubby he was sure it was IC. I think my follow-up was a week after the procedure.

[Claredale]

When my symptoms of freq/urg and pressure hit me literally over a day or two (I was on vacation), I knew this wasn't normal, so I made an appt as soon as I returned from my PCP. I started out with my PCP since I had to have referrals back then, then my gyno which he did an ultrasound, but he called my PCP to get me a referral to my uro the very next week. I was literally just following what I was told to do.

That is probably still one of my biggest questions regarding IC. Here I was going to a uro 20 years ago complaining about freq/urg and pressure and I knew within 3 weeks or so that I was diagnosed with IC. I have a computer savvy husband that immediately began investigating my symptoms on line especially when my uro mentioned the world "cystitis", so at my next appt (he fit me in at least a once a week and his office was a very busy office. My hubby went with me and we discussed the possibility of IC since my symptoms fit to what we were reading about it. I had never had a UTI, or any female problems in my life. I was frankly a very healthy person with the exception of my Eczema. That day Dr. Conrad did a PST test (I had no idea what that was, but I had no issues having it done...whatever would get me to a diagnosis was fine with me.) after the positive results from it, I was scheduled for a hydro/cysto within a few days to confirm my diagnosis. And to know that 20 years later people are still going without a diagnosis for months to even years, just floors me. I truly just do not get that!!!! I guess I was lucky not to have so many people's opinions on what the dos and don'ts were back then. Now I know all the controversy with the tests, which I hope still wouldn't have phased me. I made sure I trusted my doctors at all times. The point was to get a diagnosis if at all possible so that my husband and I knew what was going on.

These days it seems like so many "stigmas" are put on tests that back in my day were just so routine in the diagnosis process, but as painful (which in reality, the symptoms are much worse!) as the tests were originally, my doctor was very compassionate about always managing my pain when I asked...yes pain meds from a regular uro! What the most important thing in all of this was that I had a diagnosis, I certainly didn't do well after the hydro, cysto, but it was just as matter of healing and taking care of myself. I had ready that it "sometimes" world relieve your symptoms for a while, but I wasn't surprised when it didn't relieve mine. The procedure was simply a dignositic tool. I healed from the procedure and my doctor was very forthcoming on what I was to expect. I have never been told that it is "in my head" nor that I had to go through several doctors until I finally had a doctor that believed and listened to me. My uro only had a hand full of patients with IC, and he was a regular uro and didn't have alot of experience with IC and it's treatments with the exception of what I read, so may times Dr. Conrad and I read things that I brought with me, but at least it was enough to get me on the usual med prodocal and even had a version of the IC diet that would be a good idea if I followed, which turns out isn't much different than the one of this site, plus due to my Eczema, I already avoided many of the acidic foods anyway.

My mom and husband were given the information right after my hydro as well. I truly don't remember ever seeing my doctor after being put to sleep. Hubby said he came in the room, but I was too busy either trying to pee or through up! I don't know about pictures, but I never asked to see the pictures. At that time, I was mainily dealing with freq/ urg and some pressure. Pain was only a factor when I was having a flare. I had no idea to ask about my written results. I just had a piece of paper on my surgical notes, that I had mild/moderate IC. Even if it said what my capacity was, and that went right over my head, but again, I didn't know the questions to ask.

After a few years down the road, I thought about asking for pictures, but I just didn't do it, by then I was being treated by Dr. Doggweiler anyway. My first hydro/cysto was 20 years ago, but the only thing that he even suggested I would have to wait for the results was the biopsy, but he first said that he was pretty certain he knew it would come back negative for cancer from my family, which I was relieved.

Back then, I had very limited information on IC except that it was a chronic bladder disease and having Eczema my entire life, I knew what that meant, something that would always be around and there wasn't a basic line of treatment for it. It was another thing I would be dealing with until a cure was found. I had no idea, for which I am thankful that I didn't have the burden of knowing what may or may not be how my life was going to be. I am still thankful that I didn't have to worry about my next step at that time. My doctor pretty much told me info as I needed to know, plus I had the ICA to read. It just didn't have patient testimonials on it which I craved! I stayed away from anything that indicated "miracle cure". I learned that from dealing with Eczema! I was just thrilled to know that all of this wasn't just something in my mind.

When I had my 2nd hydro/cysto I was completely out of it afterwards even though I felt I was fine, but throwing up was pretty much all I could handle at the time. I at least remember him coming in to talk to me. I have no idea what he said, but my family was able to tell me that his findings showed that my bladder was worse. I was given a sheet to come in for a follow-up in a week to discuss getting my referral (which was what I needed back then, and Dr. Doggweiler wasn't on my insurance company's referred list. That is when he talked to me about what was going on and he also gave me the name Dr. Ragi Doggweiler. Which of course hubby and I immediately did research on her. It took me well over a year to actually see her, but fortunately Dr. Conrad continued to care for me including my pain meds until I was under her care.

The point of my post is that there ARE doctors out there that are compassionate and don't just look at women as complainers. He even said himself that he couldn't believe how much pain I had to be enduring from the looks of my 2nd hydro. Even though he was the one that did my DMSO treatments, I still completely believe he was following protocal and I just happened to be a patient that didn't meet those results. Like I said, he didn't have very many IC patients, and according to him my symptoms were above his ability to treat. He NEVER made me feel like I was a complainer or that he didn't have time to talk to me. He was going through kidney cancer himself at the time when my symptoms turned to severe. I am sure that he knew very well what it was like to be a patient and counting on a doctor's feedback and encouragement.

[anewday]

Tracy I liked your post :) The first uro I went to really brushed me off BIG time and made me feel like a complainer.

The funny thing is, my uro now is pretty young (first uro was older) and is like yours- I was diagnosed and treated VERY quickly. He never hesitates to help me manage my pain and is always completely sympathetic.

There ARE doctors that will help- if the first one you go to doesn't, go to another, then another until you find one who will. I wish I would have done that years ago.

[Claredale]

Thanks Jen, I just wanted people to know that they definitely have options. I truly don't believe that I would ever allow a doctor to give me a little pat on the knee and tell me that things will get better. I know my body and if things aren't right, then why keep going to that doctor. Of course the only doctor that I didn't like took over my favorite doctor's practice, but I had no problems emailing my prior doctor and asking her advice. She had probably been contacted by others because many of the patients that used to see my wonderful Dr. Doggweiler and now being treated by my current doctor!

I just believe if you go to a doctor that doesn't believe you, why waste your time and money. I was fortunate, but I was never one to sit back and wait for the next shoe to drop. Thank God, I never had a doctor to frankly ignore my symptoms, but I have always gone to appts with my voiding info, any medical papers I could get my hands on and requested help and frankly told the doctor that I have never been one to be under a doctor's care, so this was a totally different position I was in. It also never hurts to investigate a doctor before attending your appt. You are the patient therefore you are the one paying!

I hear all these stories of doctors making their patients feel foolish. I am in no way mean or combative, but I have NEVER felt as if a doctor didn't take me seriously and when I was in pain, which I made no apologies for, I had no problem asking them to help me alleviate my pain. I have never abused the system, went to the same pharmacies and allowed my pharmacist know what was going on, so that way, I didn't feel guilty getting the meds filled that I required. If I had any inclination that anyone that cared or treated me was "looking" down on me, I made a point to be open with what my life was like. And that my goal was to live a normal life as possible. I never expected miracles, but I at least expected a professional doctor and his staff.

I am also fortunate that my uro/gyno is very up to date with his research, so he makes it easy to talk to. I have even discussed treatments on here that other people have tried and he is very honest with me on what the majority of their research has actual support with medical backup. I have taken things to him that he hasn't even thought of trying and at my next appt or so, he will tell me that he appreciates that I do my own research.

Thanks Jen, I appreciate your kind words.

[vm]

My uro told me in the recovery room and also told me mom who was in the waiting area. I would call the uro's office and see if you can find out sooner. Kind of ridiculous to have to wait 2-4 weeks to get ANY feedback from your doctor.

[magicmothra]

Thanks to everyone for your response. It has certainly been helpful. For the life of me, I can not think of why my doctor would not have told me anything, not to mention not even coming back to check in on me before I was able to go home. He is a great doctor and from the get go has suspected IC but it just floored me to not hear anything. Perhaps they were extremely busy and he just couldn't get around to it. I am not going to get myself too anxious or worried about not having any results or feedback but I must admit that not knowing anything has made me wonder if something worse could be suspected and perhaps that is why he didn't say anything until he could get results from a biopsy. Anyway, not trying to jump the gun and hopefully there is a simple explanation for this. I do feel pretty good after having this procedure -- still hurt and sore a bit -- and feel that I am not going to the bathroom quite as frequently as I was prior to the procedure. But, one day at a time -- it's all I know to do.

[jen74]

I think he should have had a consult with you after the procedure. My urogyne at least talked to my husband after my cystoscopy and said I had IC. That is so unprofessional.
Jen

[magicmothra]

It was a shock! I have had many procedures such as colonoscopy's and have always had the doctor come in and check on me and tell me what he found -- that is until this incident. I am going to call first thing tomorrow morning to his office to see if I can find out something. If not, then I will go to the medical records department and ask for a full copy of my record and see if I can make sense out of it.

I do have another question regarding pain medication after having a bladder distention/cystoscopy. Did doctor's prescribe something after the procedure or did they tell you that they typically do not give you anything for pain. When I woke up from the procedure, of course it hurt pretty bad. I was given pain med several times and then when the nurse gave me my discharge (after telling me I had to schedule my own follow up appointment) I asked her if my doctor was going to give me something for the pain. She stated they normally do not give anything. I asked her if I could have something because I was hurting at the moment. About 30 minutes later she came back with a prescription for pain medicine and a prescrip for utira. So, having this happen in culmination with my doctor not following up with me after the procedure left me and my husband perplexed.

[vm]

I don't think my doctor would have given me pain medication if I hadn't asked prior to the procedure. I had read here at the ICN to make sure you get some so I did ask, but he seemed surprised and seemed cautious in only giving me 3 days' worth. Which surprised me! LOL I certainly needed it for a few days, so I am glad he honored my request!

[InolaC]

regarding your question about pain medicine, they gave me a few shots of dilaudid in recovery ( i woke up with a killer migraine) and then gave me a demerolwith phenergan to take home for that night and my doc wrote me a prescription for 60 10mg percocet. directions are to take 1-2 tablets every 4 hours as needed for pain.ive been feeling pretty bad since wednesday when i had the procedure but being diagnosed then and there was a blessing it feels great toknow im not crazy and to have a name for whats going on. I never thought i would actually be excited diagnosed with a chronic illness but it far beats feeling as if im truly going crazy and im completely alone. luckily i have been blessed with having a great uro who deeply understands ic and her patients needs and struggles. i pray you continue feeling better and find some satisfaction in your uro. I was misdiagnosed with a few prostate issues at first but i began seeing my current uro and she is a godsend truly.http://www.ic-network.com/forum/images/smilies/angel.gif So they did give you pain medicine besides ultram or they didnt. how is the ultram working for you

[magicmothra]

They did give me pain med - darvocet as I can not take codeine. They also gave me utira - which I already had - and uti which is similar to utira I believe. I am feeling much better but upon leaving the hospital I was hurting and then of course going to the bathroom was not a charm. I am so glad I asked for the medicine but had no idea that I would have to ask. I still feel a bit fuzzy in the head from the gas and have been pretty tired once I can actually go to bed. And I am still taking amitriptyline as it was prescribed by my doctor's nurse practioner a few weeks ago when I tested positive for the potassium sensitivity test. She gave me a prescrip for the Elmiron but told me to wait until the procedure yielded its results as well as confirmation from my GI doctor as to whether it is safe for me or not. I had a serious diverticulitis attack in january and in hospital avoiding surgery. Luckily I did not have to have the surgery but it took many months before I was in the clear. My GI says that elmiron is hard on stomach and he will get back with me about it but told me not to start without his consent. Of course, I still have no idea if I officially have IC or not since the doctor told me nothing.

[InolaC]

Hey magic,
Just wanted to check and see how things are going. Has your pain levels been decreasing at all from the post-op pains or are you still feeling the same. Im guessing you havent heard anything from doc since theres been no post. Let us know whats going on and what they said when you called even if they didnt give u the answers. Pm me if yuo need anything and remember if they still havent given u any info dont get discouraged turn the anger into positive motivation and go do some self helpd excercises or something when you need to clear your head.

[magicmothra]

HI --

Thanks so much for checking in. I did finally get resolve today from the doc's office. His nurse apologized greatly and said that it was quite hectic in the surgery center on Friday and she doesn't know why he didn't check with me after the procedure. When I told her this on Monday she was a bit shocked that I knew nothing. However, she said my OR report was not transcribed at this point and so she had to wait. Nonetheless, it is confirmed that I do have IC. They did not see any lesions but many of the vessels typical of IC (?). She stated that my bladder could only hold 600cc, so he stretched it and then restretched it. The second time around I was able to hold 650cc which is somewhat better. I am feeling much better - especially today. I was very dizzy over the weekend and on Monday but that has passed. I am scheduled next Monday for a follow up and treatment counseling and the nurse told me that they are going to want me to come in weekly for bladder instillations. I have no idea what is involved with this but will certainly find out on Monday. In honesty, I feel quite relieved to know what is going on in my body - Finally. Also, to know that this entire time I was not kidding anyone about my symptoms and am not crazy - is such a relief. I know how important it is to follow your intuition and listen to what your body is telling you despite all the many doctor's visits and tests that all came back negative.

Thank you all so much for your help with this. I am so glad to know that this incredible support is available and I am sure I will have many questions about IC and how to manage it as I am so new at this.

Again, thank you!!!!

[waterflow]

My Uro came in to the recovery room. I think he said things looked inflamed but I can't remember for sure but I did have to wait until the follow up which was 3 weeks later. I found with just about everything done at the hospital it was a 3 week wait for the follow up appointment. I did have pain meds to use at home.