Was it worth doing and other questions

[dreamy]

I would like to know was it worth it? I also would like to know if you are better or worse from it. I also would like to know if anyone stayed overnight because of the procedure. I also would like to know if anyone thinks the bladder shrinks any after they blow it up so much and is that why some have to continually have it done. Is there anything you know now that was really important for you to have known then? Do they give you iv antibiotics and do they instill anything in the bladder? I also would like to know if everyone had to do bloodwork before? And does everyone doing the cysto hydro procedure get their urethra dialated?

[GriffsMommy]

I thought it was worth it to know for sure I had IC. The uro who did my hydro/cysto wouldn't give me the diagnois of IC until I had it done even though I had all the symptoms and a positive PST.

However, after I found the dr who is now treating me I am not so sure it was worth it. He does not do hydro's and said he would have diagnoised me based on the PST and my symptoms alone. That is sort of frustrating when I had the hydro done and he wouldn't have had me do it if I would have found him sooner.

I personally was not made better or worse by the hydro. I had some pain afterwards but when it was gone I was back to my pre-hydro symptoms. I did not stay over night. I was able to pee as soon as they took me out of recovery and then I waited a few minutes to have a snack and make sure I was okay before going home. I don't know the size of my bladder but the distention is only temporary and it should go back to it's normal size afterwards. I believe the thinking is that when the bladder is stretched it inturpts the signals to the brain and gives some relief.

I did not recieve IV antibiotics. They gave me an oral one before I left and gave me a script to get another couple to take over the next couple of days. They did not instill anything in my bladder other than the water they need to to look around.

I did have to get bloodwork before my hydro. Getting bloodwork before surgery is pretty standard and I don't think I've ever had a surgery where I didn't need it prior. I did not get my urethra dialated during my hydro. Hope this helps.

[ICNDonna]

I had to have blood work done before the surgery. Yes, I have spent the night in the hospital several times. Yes I get antibiotics, usually IV. I have had many hydrodistentions, but it's because it gives me relief for months.

Has your doctor suggested a hydro?

Donna

[Sally939]

On one hand I am glad I had it done. It gave me a chance to know for sure I had IC. My doctor thought I did but I did not really believe it untill I saw it. My pictures were much worse than I would of thought. On the other hand it made me worse for about a month or two. Now I am back to how I was and taking my meds, following the diet and getting better.

I have only had one and did not stay at the hospital. I was given antibiotics by IV I think. I did not do blood work before. I do not think it shrunk my bladder. I did not get dilitation.

I am glad I did it. I would do it again if I knew then what I do now. I will not plan on getting any more because it did not give me any relief, but it does some. Good Luck.

[Claredale]

My IC was diagnosed 20 years ago, and there wasn't alot of information out there about IC. My doctor did the hydro/cysto after I had an ultrasound, and the usual testing. My doctor scheduled me for the hydro/cysto the next day. I went right over to the hospital to have my bloodwork done. I was glad to have it done and wanted to know what was going on. After my surgery, I was able to empty my bladder, it wasn't comfortable, but I had plenty of pain meds. They only kept me long enough for me to go to the bathroom and eat some soup, so it was maybe 2 hours or so that I was discharged. The time may have been longer, but I was comfortable (except for nausea) and was ready to go home. I also went home with antibiotics for a few days. My doctor was able to tell me what my bladder looked like and that I had moderate IC and he did a biopsy, but didn't feel he would find anything wrong, which he didn't. I had another hydro done a few years later after I had gone into remission and went through the same testing. I felt more comfortable even though I knew what to expect with pain afterwards, etc. My doctor found that my bladder was more damaged, so again that made me feel better in a way since I knew my symptoms seem to be worse and I knew then that there was a reason.

My doctor at the time (he was a urologist) explained the same theory of the pain receptors being interrupted. I didn't receive the relief that some people do of their sypmtoms, but it didn't make my symptoms worse either except for irritating my uretha which caths always do. I just knew what I was dealing with and it was the first step to getting to where I am today.

My prior doctor and my current doctor never suggested that I try to hydro again. I sometimes would like to know if my bladder looks better since my symptoms are much better than before, but I don't want to take a chance on messing with what is working.

Tracey

[kadi]

I would like to know was it worth it? --Yes, it got me a diagnosis & treatment. And a set of pictures to show the doctors I eventually changed to seeing.

I also would like to know if you are better or worse from it. Neither. Was back to my previous level of symptoms within 3 days.

]I also would like to know if anyone stayed overnight because of the procedure. [/B] I did not.

Is there anything you know now that was really important for you to have known then? That IC can also be diagnosed by a symptom scale & voiding diary, or by a potassium test. That cysto/hydro is one method of diagnosing IC, but not the only one. Some patients do get symptom relief from the procedure, but not all....

Do they give you iv antibiotics and do they instill anything in the bladder?
Yes, I had IV antibiotics. I didn't have an instillation then. My first doctor wanted to instill Chlorpactin during the hydrodistension. I read here that that is an outdated treatment & should not be done during an initial cysto/hydro, so I said no & got a new doctor.

I also would like to know if everyone had to do bloodwork before? I did.

And does everyone doing the cysto hydro procedure get their urethra dialated? No, urethral dilations are not IC treatment & should be done only if there is a specific reason that an individual's urethra needs that procedure.

Hope that helps...

[ltlmiss]

I had a bad and good experience from it. First off, after surgery I could not urinate and was in the worst pain because of it. They wanted me to be able to pee on my own but it didn't happen. So finally after begging for hours they cathed me and I had zero pain. Also, it was a HUGE amount of urine, normally I can hold only a little under 100 ml, but I swear this was like a quart of urine. OUCH! I was never able to urinate on my own so I had to be taught how to self cath for a couple of days when I got home. Not fun...
The good was that I think it DID stretch my bladder and now I can hold more urine. Thats been since December 5th. I also think that it super-sensitized my bladdder, now there is no way that I can drink cokes or tea, it never really used to matter what I drank or ate, now it does. Im not sure if thats related to the hydro or not.
I am glad that I had it done because the doctors are able to see what I am feeling now and they treat me better so I would definetly have it done again. Next time hopefully I can request to just be cathed in recovery based on my last experience.
Im pretty sure they do not do dilation unless that is something you already agreed to. And yes, they do do bloodwork since it is an out-patient surgery, I had to do some pre-op stuff like a chest xray and EKG, and urine of course.
Before surgery I had to consent to everything that I was to have done more than once, so you WILL know for sure exactly what is going to be done. They even told me that they MIGHT do a biopsy based on what they see and I had to even consent to that.
I dont have any regrets about having it done, the best part is knowing that my bladder looked how it feels and now the doctors know it too!

[leelee88]

I had severe complications. I am in the minority group. My bladder ruptured during the proceedure.

Would I ever have it done again.. NO.. But I am glad I got my Dxs Because I know the true cause of my pain. I had even got a second opinion from my GYN that I trust dearly, she was very shocked with my outcome.

But with that said. I would have still had it done because I know without a doubt that I have IC...

[Dreamlove15]

Hi Dreamy:]

I would just like to say that the Hydro ONLY helped me get a diagnosis, that is it. After having the procedure on Nov. 14 I woke up in the most excruciating pain. I had to void but the MEAN nurse wouldnt let me, told me I had to go in a pan. I said NO. And then said take me out of the recovery area so I can go on my own. So I pretty much said I would leave even though I was in pain and needed more meds just cuz I had to go so bad. I also was not prepared for how painful the first void would be and that it was going to be pure red...you know what that means. It was a very scary experience. but it didnt end there. About 4 days after I was still in such pain, nothing was helping not even the pain meds. I called my doctor he said oh well its normal, we'll give ya pyridium to help with the pain. Burning was not all I had trust me. So weeks pass by, I could barely walk, im wasnt eating, i sobbing in pain every night...sleeping only 3 hours a night... Nov. 26 I dragged myself to the ER. Turns out I had a severe UTI that was going into my kidneys...then the doc gives me AB's im allergic too. I had to spend the night. I was sent home with more AB's. Then 3 days later returned because i was still in pain. UTI had not gone away. Lets just say it took until Dec. 15th to feel back to the normal pains of why I had the hydro. I never got the whole chance to feel it or maybe it was pointless. Why? well I was told I have a huge bladder as it is...so why stretch an already big bladder..makes no sense. Im in more pain than before...have new symptoms...its just a big mess....But I figured I would be honest. Hope I didnt scare anyone. Take care and good luck with making your decision.:angel:

[dreamy]

Hey Dreamlove thanks for sharing your experience. I hope that you are feeling better. I am just not sure what to do. I dont understand why some doctors are now not doing it yet some others are doing it and why would it be good to do it if it really doesnt have any benefit for the most part. If you do it doesnt last and has to be redone. I know that it would be good to see the bladder and if I have IC but if most are treating IC without having to go through the hydro why do it? I really appreciate everyone sharing their experiences with the hydro cysto.

[dreamy]

I also wonder if the instrument they use for the procedure actually dialates the urethra some and that is why the urethra is sore after and makes it hurt to pee. Is the scope larger than the instrument that they use for the in office cysto?

[LaurenEngland]

I would like to know was it worth it? I also would like to know if you are better or worse from it. I also would like to know if anyone stayed overnight because of the procedure. I also would like to know if anyone thinks the bladder shrinks any after they blow it up so much and is that why some have to continually have it done. Is there anything you know now that was really important for you to have known then? Do they give you iv antibiotics and do they instill anything in the bladder? I also would like to know if everyone had to do bloodwork before? And does everyone doing the cysto hydro procedure get their urethra dialated?


I had my second cystoscopy about a month ago. The first one was last year and I was feeling fine the next day.
However, this time I'm sure it's made me feel worse.
I stayed in hospital overnight this time but it's over before you know it xx

[gigisgirl]

Part of me wants to have another hydro done and part of me says NO WAY. Mine was done in 2004 and they started to fill my bladder with 300cc, at 240cc the bladder stopped and wouldn't take any more at all. They then took 100 or so out and saw the hemorrhages. I didn't get pictures which is one reason I would like to have to redone. The reson i don't want to have it redone is b/c the amount of pain I'm in now so much more then 4 yrs ago. I'm actually afraid that something would happen if they tried again, like it rupturing or something. It seems like if the bladder wouldn't take anymore then 240cc under anesthesia back in 2004 that the walls were already scarred and stiffned. I don't know what the answer is "Is it worth it or not". I really believe it has helped some people, I wasn't one of those people but I may get it redone.

[Dreamlove15]

I have no idea how big the scope they used.Haha I was asleep and if they would have shown me that " I would have said your going put that where?" and then passed out on my own. I also have never had an in office cystoscopy. I don't think I would either. Can we say OUCH!:angel:

[punkey]

Before I went to my third urologist I researched the hydro thoroughly and decided I would not have it. She came in to the exam room - told me she wanted to do a hydro and I said "no" I was not willing to take the chance of all the complications. That I had read that a lot of Uros have quit using it for diagnosis. She gave me a card and told me that when I was ready to call and make an appointment for surgery. I left - got an appointment with a fourth uro. Told him he was my only hope. Told him my feeling on hydro. He said that he know longer did them as they did not help that often and that there could be complications. He gave me a prescription for hydroxyz-pam. I started the medication along with accupuncture - aloe vera and strict diet. I am 95% better and hope to keep improving. My first flare lasted 8 months - used diet only for it. This flare has lasted 7 months. My main symptom is pain. The urgency is not that paid and not too much burning just pain, pain, pain!!! You may be one of the lucky ones that can do it with diet and aloe vera. My new uro said that the hydro was not a definitive test for IC - I also researched on the internet and they said that people without IC sometimes have mast cells - so whats the sense? I say go with what you feel. I have been inclined to go with my gut tells me - and I am usually glad that I did. My internist told me if he were in my shoes that he would do all the research he could on the internet. I do. I second guess everything the dr tells me. I have been burned too many times.

[punkey]

Before I went to my third urologist I researched the hydro thoroughly and decided I would not have it. She came in to the exam room - told me she wanted to do a hydro and I said "no" I was not willing to take the chance of all the complications. That I had read that a lot of Uros have quit using it for diagnosis. She gave me a card and told me that when I was ready to call and make an appointment for surgery. I left - got an appointment with a fourth uro. Told him he was my only hope. Told him my feeling on hydro. He said that he know longer did them as they did not help that often and that there could be complications. He gave me a prescription for hydroxyz-pam. I started the medication along with accupuncture - aloe vera and strict diet. I am 95% better and hope to keep improving. My first flare lasted 8 months - used diet only for it. This flare has lasted 7 months. My main symptom is pain. The urgency is not that paid and not too much burning just pain, pain, pain!!! You may be one of the lucky ones that can do it with diet and aloe vera. My new uro said that the hydro was not a definitive test for IC - I also researched on the internet and they said that people without IC sometimes have mast cells - so whats the sense? I say go with what you feel. I have been inclined to go with what my gut tells me - and I am usually glad that I did. My internist told me if he were in my shoes that he would do all the research he could on the internet. I do. I second guess everything the dr tells me. I have been burned too many times.