Cysto with Instillation made things worse

[dirl0221]

I have been dealing with terrible urgency for 10 weeks now and nothing has helped. I have been catheterized and have tried several different medications to no avail. Currently I am urinating fine with no retention but the bladder urgency remains. Sometimes it's tolerable and sometimes it's not. Last Thursday my doctor did a cystoscopy with instillation and she said that my bladder looks fine and healthy and has good capacity so she's not sure why I am having this problem but she suggested trying 4 instillations to see if that helps over time. She said if that doesn't help my next option is inter-stim and after that, who knows. The day I had the cysto and instillation I was EXTREMELY uncomfortable but by the next day the discomfort had gone but the urgency was worse and has continued to remain that way. I talked to the nurse today who said that everyone is different and it may have irritated my bladder and it's up to me whether I should try another one or not. I feel like I have to because I only did one, but has anyone else experienced this? Where it got worse afterward but ultimately helped? I don't know what else to do, I can't believe this has gone on this long and I am desperate for something to help me. I have 2 little kids and this affects them as well. If this doesn't work and the inter-stim doesn't work, I am afraid to think of what the next step would be.

[stef000]

do you know what they instilled you with?
could be that your just reacting to that.....some people get different effects from different ingredients so maybe those were just not for you.....
try talk to you doc about rescue instills......they have lidocaine and such in them to really calm things down.....
look at the rescue instills section on this forum.....and also on the main page
its something to look into anyway....
i hope you get some relief soon with something.....this is a very frustrating disease....:bonk:
:pray::smile tee

[dirl0221]

It was a DMSO instillation which I am reading is not used a whole lot anymore so I am concerned. However, the hospital I am attending is extremely reputable and this is my urologist's speciality so I would hope that she knows what she's doing. I do intend to mention it though and I am also considering looking for a new doctor as well.

[stef000]

yeah i have heard of some having reactions to the DMSO or it just hurts them and doesn't help at all or some feel like it makes them worse and then better....
i would say talk to your doc about other options since obviously this type is not good for you.....
definitely look into the rescue instills too
definitely talk to your doc about this
i hope you find something that helps soon
:pray::smile tee

[dirl0221]

I left a message already for the nurse and mentioned the lidocaine but the problem is that my doctor is out of the office until Wednesday morning and I have my next instillation Wednesday afternoon. I am losing confidence in this doctor though, while the hospital is extremely reputable and most of my medical care takes place there, I feel this has been disorganized and I hardly ever see or talk to the doctor. Everything takes place through nurses. When I have my instillation Wednesday I won't even see the doctor, only the nurse. I am worried to not do it, but I am worried to do it as well. I mean, what if it could end up helping in the long run but just gets worse at first? But what if I do it again and it just ends up getting even worse? As if this isn't bad enough already?! And nothing helps it AT ALL! I feel as if I am really stuck between a rock and a hard place. And I have already tried several medications and PT which was also unsuccessful. And since my bladder is healthy there's no reason for Elmiron or something of that sort. I feel lost and frustrated.

[dirl0221]

Yesterday I went in for my 2nd instillation. The nurse said that it is a combination of lidocaine, DMSO, heparin and sodium bicarbonate. My doctor was not there, of course, but she talked to one of the nurse practitioners who suggested that I try another instillation and if I continue to have worsening of my symptoms then I should consult with the doctor again before having another one. So far today I feel as if my urgency is worsening and I'm not sure if that's normal due to the irritation of being catheterized and having a foreign substance shot into my bladder or if this really isn't the route I should be taking. I am holding off calling the doctor until tomorrow but wanted to know if anyone had any advice for me. Thanks!