I was hoping this was my "it" but I don't think so

[GriffsMommy]

Okay so I went and got my second rescue instill. It's a pretty basic formula so it seems. Lidocaine, sodium bicarb and heprin. I don't know what the amounts are because it's only my second one.

It is so cool and soothing when it goes in there and while I'm holding it. BUT after I peed it out I started to have intense burning! :cussing: I mean, I feel worse than I do most days! This is pissing me off!! I was really hoping this would help me and it does while it's in there but what's the point of that if it hurts more after I void it out.

I called the NP who does them and left a message for her because I don't know if it's even worth it to go for my appointment next week if it hurts this much afterwards. I just feel like I want to cry. I am so frustrated by all of this!!!:rant: :cussing: :mad: :help:

Thanks for the continued support.

[SharonA]

You know what I am about to ask :)...Could you have a UTI? How long did you hold the solution? How long was it after the catheter that you had the burning?

[BBB]

I truly hope that this isn't the case for you...
But I can't do instills because my uretha is so messed up and it cause to much pain after using a cath.

Again, just an idea. Maybe it is a UTI?

[Sally939]

I a so sorry. They hurt me too.

[leelee88]

Christine,
This really sucks for you. I know you were hoping that at least the instills would give you some relief.
Since nothing seems to be helping with the pain, and only causing more problems. I would really look into the possibility of your Endo comming back. It could have grown back in a differant area or on your bladder that could be why the pain is coming from the same area.
My paps came back positive again for mild dysplasia so I will be getting another biopsy and possible leep. If I have to have this done I am going to go ahead and get the whole proceedure done and have my Endo removed to.
(((hugs)))

[verdicries]

oh christine...

dammit!!! i was hoping the instills would give you SOME much needed relief.

i 2nd the others, is it POSSIBLE you have a uti (ugh)? also, i think i had mentioned to you before about your endo returning? please, have that checked out cause it just MAY be the cause of all your suffering!!

let us know what the np says. did the CATHETERIZATION hurt or JUST when you peed it out...b/c of the cath or did your entire bladder hurt too? how FRUSTRATING!!!!!!!!!!! :cussing: :cussing: :cussing: :cussing: (there just isn't enough room on the board for all the l'il cussing guys i wanna put here...).:bonk:

sending you a HUUUUUUUUUUUUUGE HUG from me and connor...

[sickofmybladder]

Could it be the "recipe"? I know some other people on the board use something else with Heparin other than the lidocaine and sodium bicarb - I'm so sorry they didn't help.

[Sally939]

I think the sodium bicarb hurts some people. Maybe try one with out it? Not sure.

[GriffsMommy]

Thanks for the concern everyone.

Sharon:
I don't think it's a uti. I held the solution for 2 hours and then voided. The burning is ALL in my urethra. I think it is from the cath itself. She uses a really really small one which seems to almost feel sharp and hurt while going in.

I spoke with the NP and she thinks it is irritation from the cath and said I should try one more next week and she'll give me some ladocaine jelly to put right on my urethra to help with the burning.

I am not going to give up hope quite yet. Thanks all for the support. I will check into the endo again but I want to try to see if the bladder calms down first as I really believe that is mostly my pain problems.

[Charisse]

I had the same problem with the catheter both times. I have been advised to try the LoFric cath if I ever do it again. I also feel fine until I go to urinate out the solution and then the pain begins. You might try a lofric cath before giving up completely. Hugs.

[jen74]

Hi Christine.
I also do the instills at home. WHen I had my first one at the doctors office, I had alot of pain afterwards as well in my urethra and bladder. Well, when I started doing them at home, It was better. I found out that the heperin that they were using in the office contained alcohol as a preservative. I got mine preservative free and it does not cause that burning. It is an idea. Also, I used lofric catheters, and OMG, they were awful!!! I had SOOOO much pain after using one of those. Never again!! They do not have enough lube on them with that hydrophilic stuff. OUCH!!
Ask if maybe they could order the stuff without preservatives, if theirs do contain them, or maybe they will let you do them at home and you could get your own and ask for the preservative free ones. It made all the difference for me.
Jen

[GriffsMommy]

Well the NP uses pediatric feeding tubes instead of regular caths so they are really really small. I know she put some regular ky on it. I might ask her to try some lidocaine gel on the cath next time to see if that helps. I honestly think the red caths they used at the uro's office didn't hurt as much but that was probably because of all the lidocaine gel they used before the cath was put in.

I guess I'll give it another try next week. I don't feel so bad now that the burning is gone. I know it was all urethral and if I had an infection I'm sure I wouldn't be feeling better so I'm not too worried about that.

[BBB]

Christine~
I really want this to work for you, so sorry it is not!! I mean that.

Please be careful if you think it is your uretha. As I stated in my previous post I can't instills because of my uretha. The more I tried to be cathed (for various different reasons) the more scared my uretha became.

I don't want to scare you or bum you out. I just really wanted to pass it on for you and your doctor's consideration.

Take Care,
Betsy

[SandyRN]

Some people have a problem with lidocaine and do better with marcaine. It's worth a try to ask and see if they're willing to switch at least once and try the marcaine. Also, the preservatives in the heparin and other meds can DEFINATELY be a problem. Doing them at home I get the small, single use vials that have no preservatives at all and it did make a big difference. I'm sorry you're not having the results you wanted from them. I hope they can figure out a way to make them more comfortable for you. I did find that doing them at home made a big difference for me as well. You really do deserve a break!

Hugs, Sandy

[GriffsMommy]

Well there is a glimmer of hope afterall. The horrible burning did stop near the end of work and by the time I got home I was actually feel pretty darn good. So maybe this will work afterall if I can get the urethra pain under control. :)

[L. Thomas]

:pray: I too hope things work out for you.:pray:
Instills have been sooooo successful at treating my IC.

Do keep in mind a couple of things
There are LOTS of recipes for instills
People have had problems with sodium bicarbonate all the way to problems if the meds have preservatives in them
There are LOTS of things that can cause discomfort, not only the size/type of catheter but even sensitivities to material used for the catheter
There are some that don't see positive results for several weeks Some even try instills for a few months and don't feel they are helping then a year or so later try them again and have positive results

But all in all what you have to decide is..Is this helping me or am I being hurt by it? Is it worth it for me? Rmember instills are not the cure all for everyone...if they were we would all do them and someone would be rich for finding the "gold standard" for treating IC.

[laura dove]

Hey Christine,

If they put lidocaine jelly in the urethra 5 minutes before they
cath, it should greatly reduce your pain. It needs X to absorb.
Switching to marcaine is a great recommendation, because it is longer lasting.
I've heard great things about adding one elmiron capsule
into the mix. instill 1xper week . I did this w/out
the heperain when i was pregnant and was a lot better by
my third trimester, though many women get relief in the third trimester
for some unknown reason;probably hormonal. 8 weeks after I delivered Elliott the doc
wanted to stop to see what would happen. Well.....I got sick,again.
Heard great things about the elmiron instilled w/ heparin,
sod. bicarb(necessary for absorbtion and it alkin. the urine,as well)and
marcaine. Not sure if a steriod is added. I will research it, because
that is what I think I am going to try instead of the dmso(again) with
Doc.:loco:Cuckoo
xxx,
Laura

[blendno14]

Hi Christine,

I get instillations for 2 years now. In the first month, I din't notice any difference, but some pain the day after and the second day after, not really bad though.... But over the course of half a year, or a year I noticed an constant decrease in symptoms. I absolutely believe, that patience is a key to treat IC. I really hope they find a way to mak the cath easier for you....

[sickofmybladder]

I had similiar symptoms to yours when I initially started the instillations in office - now that I'm doing them at home I don't have the same lasting burning - I really think it's because I can slow down putting the cath in if it starts to bother me - now I would hesitate to let anyone else put a cath in me :) I still have some burning during the first void after an instillation but that's it - also - I noticed you said you held for 2 hours - maybe try a little less time next time until you get used to them.... Just a thought.

I really hope the next one goes better for you.

Becky

[sickofmybladder]

I forgot to mention in my previous post - when I was having them done in office they were using a pediatric feeding tube also - at home I'm now using a 10F catheter (the red ones) - I also think that has made a difference (for the better).

Just another thought......

[GriffsMommy]

Thanks for the suggestions. My uro used to use the lidocaine jet and insert it about 5 mins before they cathed me. I don't know if they have this at my gyn's office. I will have to ask next week. I'm just happy I saw some improvement for little bit last night. It gave me hope. I think I'm going to have her write me the scripts for the meds and supplies next week so I can start doing it at home. I really think it will help my urethra to do it myself as oppsed to someone else doing it.