Hydo again after 10 years??

[SandraCT]

I had a hydro-distention and biopsy 10 years ago. I woke up in screaming pain and was sent home with a catheter for 2 weeks as I was told my bladder was VERY inflamed. I swore I'd never have that procedure done again. Well now it's 10 years later and I'm in worse shape than ever. My symptoms back then were similar to a UTI (urg/frequency/burning) and urinating up to 40 times a day. Well in the last 2 years, I now in addition to all those symptoms, even have retention and leakage. My stream is very hesitant and weak flow - mostly just dribbles and it starts and stops. I'm not emptying completely. Sometimes I feel the urge to go and somedays I have no feeling to go even after drinking lots of water. I was now told that my bladder can hold a very large amount. I'm wondering if the hydro made things worse for me.

But now my Gynocologist wants to do an ablation on my uterus and also have a Urologist in there to do another hydro. He feels it's necessary and would be wise to do the procedures at the same time. I told him my concern after the last one. He said the Urologist said the reason I had all that burning was probably because that former Urologist did an instill at the same time. He thinks that's why I was sent home with the catheter. I'm a bit confused by all of this and wondering what I should do. I mean is the instill necessary? Although I was in bad pain for weeks, once I finally healed, I felt better for a couple years. From what he's telling me, he'd do just the hydro/biopsy. What is the hydro for? I guess what I'm trying to say is would it be beneficial without the instill? I'm so nervous about all of this and it's getting me depressed. I'm worried that any of these procedures will make me worse and I'm especially concerned about the retention I now have. I'll die if that becomes worse after hydro.

Any advice would be appreciated. Thank you all!

[leelee88]

If you do not have a small bladder capacity I do not see how you would benefit from just the Hydro.. But maybe someone else can answer this one..
I do hope whatever you decide you can get some relief..

[Briza]

I have large bladder but most of the classic IC symptoms, including hunner's ulcers. My "diagnostic" hydro was not therapeutic, caused me to go into complete retention for over two weeks, caused me paralyzed intestines/bowels and landed me in the hospital for a week, had to have my stomach pumped thru my nose to get my intestines working again, sent home with cath for almost 2 weeks, a very extended recovery, much missed work and income, and huge hospital bills (and yes I DID have health insurance but at the point I got to that was of no comfort or much help financially or otherwise). Oh yeah, the pain, did I mention that???? pain so severe there is a not a pain scale with a number high enough to judge it by. No, I will not be having another hydro...ever. That was my own personal experience...I am very aware that majority of others do not have anywhere near the same experience as I did. I was knocking on death's door.

Knowing now what I didn't know then, if I were already having retention issues I personally would not have a hydro. Others will definitely share different and MUCH better experiences, but I do not have much if anything good to say about my hydro experience!!! I wish I had been in the other camp but apparently I drew the short straw when it came to hydro complications and pain!;)

[ICNDonna]

I'm one who is helped by hydrodistention. However, the only thing I had instilled at my last hydro was marcaine to help with any post-op discomfort. It sounds like you may have had DMSO instilled after the first one. I've had DMSO, but never with a hydro; we waited two to three weeks after the hydro.

Donna

[Briza]

During my hydro nothing was instilled, I am pretty certain, Sandra, from reading my post op reports myself and the reports were very detailed. If there were any way to obtain a copy of your previous hydro post op reports, most likely it would say whether or not anything was instilled.

[SandraCT]

Thank you all for your responses. I'm still confused about all of this because of my situation with retention. I think getting a copy of the report is a good idea. Wishing you all well.

[aleet7]

Hi Sandra,
I've only had one hydro also(with DMSO). The experience was very bad to put it nicely but I did recover nicely about a week later. I do believe that the spasms and severe burning was a result of the DMSO on the hunner's ulcers(the hydro, meds on an inflammed bladder is traumatic on an already damaged bladder but the after affects are supposed to be healing). I would be afraid to have it done again but if my symptoms get much worse I will have it done.
I am a little confused by them doing a hydro on a large bladder(was told that my bladder held 200 cc's and was stretched to hold 400).
I totally understand your hesitancy but you did say that you felt better after a couple weeks(who wants to suffer for a couple weeks!!!!). I have horrible reactions after Instills but I do get much better days later. I think you have to way the odds. Do you suffer for 2 weeks and then get much better or do you not go through it and continue to have the UTI symptoms with retention and leakage? I'm so sorry that you're going through this( I feel so bad because I'm now having retention too and getting kidney infections). I pray that you find the right answers Sandra so that you can get better soon. Keep us updated on what you decide to do...ok.

Best Wishes!
Aleet7