instill or not

[mlzippy7]

I saw a new uro/gyn but I am not so sure about him. My primary doctor doesn't think too much of him because he can't use any of the hospitals. He isn't allowed. ANYWAY
he wants to try heparin and lidocaine instill tomorrow and my old uro said instills like this would only make me worse since the hydro he did made me 100% worse.....so my question is do you think it is worth a shot???
My frequency, urgency and pain are out of control..every 5-10 minutes. He said this way he could tell how much pain is from my bladder vs the endo and fibro and all the other issues.
I don't know if I should let him try it or not??? I am so SCARED and CONFUSED. I really trust my primary doctor BUT he can't help my bladder and pelvic problems..

WHAT DO YOU THINK???:help:

[GriffsMommy]

Well first off you have to do what you feel comfortable with no matter what your primary says. This uro/gyn obviously still has their medical license but it does seem odd that they don't have previlges at any hospitals.
I can tell you that the heparin and lidocaine instills are very soothing for me while they are in. I have been doing them for several months and still can't say that they are helping past the time they are in my bladder but to have that nice numbing feeling while it's in is still really nice when I'm in bladder hell almost 24/7.
The one thing I would recommend before you let him do the instill is to find out if he uses lidocaine on your urethra before hand. The NP who started doing mine and taught me how to do mine did not because she was using pediatric feeding tubes as caths. I guess she figured it was so small it wouldn't be a problem. Boy was she wrong!! I never in my life realized how sensitive my urethra was until I had a rescue instill done with no lidocaine before hand.
In my personal experience the best thing out there is a urojet. It is lidocaine gel that is in an applicator where they can actually squirt it into your urethrea before the instill. My old uro used to use the big red rubber caths on me to do dmso treatments and the cath never hurt me at all because he always did a urojet treatment and let me get numb before he used the cath. I remember calling the NP in tears saying, I can't do this, once I void the rescue instill out my urethra hurts so bad I can't take it. She put some lidocaine on the cath itself but personally this still wasn't enough for me. When I started going to my current gyn and I told him about the painful cathing he gave me a urojet and I've been fine ever since.
Of course this is just my experience but I surely think if you're having such a rough time it's surely worth a shot. I pretty much feel like I'll try any treatment for IC that is standard or even used for some patients because I'll never know if it'll work for me unless I try it. I would hate to not try a treatment out of fear if it could have been something that helped me. If it doesn't then at least I can say I tried it and it's in my list of things that I have tried.
If you have any other questions about the lidocaine/heparin instills that I can answer, please let me know!

[mlzippy7]

Thanks Christine for the information! I really appreciate it.
I know the lidocaine before the catheter is a MUST!! I have had way too many catheters in the past to let them touch me without using the lidocaine first.

[GriffsMommy]

Well that's good. I didn't even think to ask the NP when she did my first rescue instill because the cath was sooo small. Of course my urethra didn't care and went totally nuts. Let us know how it goes if you do decide to try it.

[karen10]

Well I've never had a cysto/hydro, BUT I can tell you that I'm the biggest chicken when it comes to painful procedures and the instills are GREAT! Yes, definitely use the lidocaine before hand. In fact the last ICA magazine talked about injecting a small amt of it into the urethra so that it's completely numb before the cath even goes in! I haven't tried that myself yet (going tomorrow), but a friend said it was wonderful -- no discomfort at all with the cath or the instill. Now sometimes some people feel alittle bit of burning with it coming out, but I didn't and I've heard it's not bad, so try not to worry! I believe they are FINALLY coming up with more humane ways to treat this painful condition.
Uuuhhmm, just read Christine's post. . .duh, so yeah, inserting the lidocaine into the urethra works really well! :)

[waterflow]

I've had the hydro done 3 different times with no help at all from it. Not worse either just stayed the same. The heparin/lidocaine instills do help me and I had a huge fear of caths in the beginning but not now. My Uro puts some of the lidocaine in the erurethra before putting the cath in and he also puts some on the cath itself. I think all of this is one big gamble and you never know which one will help. It's up to you really on how comfortable you feel about doing it mind wise. You don't have to be knocked out for it so it dosen't have to be done in the hospital. Good luck with what ever way you decide.

[L. Thomas]

My only treatment has been home instills. I must say I had pain with all cath before the ones done with the 8fr. I do not have pain with these. I would rather do my own caths than let any one else do it.