Did third instill today and worse!

[jen74]

Hey ladies.
Well, I gave it one more try today and did my third instill. Well, I am having more issues with the urine retention today than with the first two. This is awful. Again, my hubby had to cath the stuff out at 2pm after two hours of holding it since I could not pee it out, and here it is 4:30pm and I am still having a hard time to pee on my own. I would say this is going to be my last instill since I am having such a hard time and having this reaction.
I just pray this did not do any permanant damage to my bladder and hope I will be able to pee again on my own normally. I asked the nurse if this happened to any one else and she said not really, and that I must be sensitive to the marcaine.(at least that is what she thinks). The instill consisted of marcaine, heperain, kenalog, which is a steroid, and biocabonate. I wonder if any of these things can cause permanant damage. I pray not.
I will see the new urogyne on the 17th of this month. I hope he has something better to offer.
The nurse I saw today said that there is no other help for IC except for the instills they do or hydro's which I wont do. What makes it worse is that my urogyne does not seem to want to work with me, and does not want to change anything. She thinks that if this cocktail works for her other patinets, then it should work for me and she is not going to change it. What kind of doctor does that make her
I am getting soooo worried since I cant get that feeling that I have to pee back and I know I have pee in there. I guess I will have to ask my husband to cath it out again if I dont go soon. I was able to get a couple ounces out every 20 minutes, but it is hard. And I have been drinking thinking it would clean out all the stuff that was in there. This sucks and I am Mad
Thanks for letting me vent. Now I feel as if I am lost as there is no other help for me, at least that is what the nurse and doctor says.
Jen

[kadi]

Jen,
What other medications have you tried, besides the instillations?

[SandyRN]

It sounds like the Marcaine is making you so numb you are unable to go. I've had that happen with the lidocaine a time or two, but I'm always able to pass it. Some people have reactions to marcaine, some have reactions to lidocaine...it really is a matter of just playing with the ingredients and dosages. I really don't think anything permanent has happened, you are most likely just very numb inside. It should pass.

I don't know what I would do without my instills. They have been a very big help to me when I'm flaring. I do them at home and use sodium bicarb, heparin and lidocaine.

I'd see if the doc can change it to lidocaine and see if you aren't so numb the next time.

[L. Thomas]

I just hate to hear people say their MD won't consider other treatments. The instills work for me but I know there a lot that need something else.

I have read on a post that the steroids can cause pain. My instills just have lidocaine, heparin and sodium bicarbonate.

I also have found that the amount instilled varies quite a bit. My instll is 11cc. But I have seen post where they were instilling 100cc or more. I would think if your baldder capacity was small and the instill was large that it would cause pain.

My bladder capacity is 500+cc and 11cc controls my symptoms.

[Emma's Mommy]

why wont you do a hydrodistention? i was very hesitant but i needed a diagnosis and this is the best way to truly see the bladder and diagnose IC and once i had recovered from the surgery it felt alot better!!

if you want to chat about it feel free to PM me

[jen74]

Hi gals.
Thank you all for posting.
Kadi, I have tried quite a few things. I have tried elmiron which gave me bad side effects so I had to stop it. I also was on hydroxyzine for a while, but it did not seem to be helping either. I also tried ultram, but that caused my heart to race and was told to stop it. Pyridium usually does not help my pain, it actually makes me feel kind of worse. I just was on lyrica which also made my bladder pain worse. And now I have been doing the instills which do seem to help some with the pain, but I do still get days where the pain is bad and also I can never pee the stuff out as it does something to my bladder.

Sandy, I agee with you about my doctor should play with the ingrediants of the instill until we find what works for me, but she wont. She believes that here concoction is what works and if it helps some, then it should be fine for all her pateints. At least that is what it seems like. I asked her to cut back even more on the marcaine, but she said no. She said I would have to much pain if she cut it back anymore. I believe all patients should be treated as individuals in any case. No person is the same.

L. Thomas, I think the total of my instill is like 75 to 80 ccs of liquid. It is weird because the nurse said that usually she has the opposite happen with the other patients where they can only hold the stuff for like 20 minutes and they have to pee it out. Where I could probably hold it for hours as it numbs everything and it makes me feel like I am swollen in my bladder. Maybe it is just the reaction from the marcaine, I dont know. But the last time, I held it for two hours and was drinking some water afterwards thinking it would help me pee it out. Well, I did get out a few onuces, but that was all. My hubby cathed out over 15 more ounces. After that My bladder was so sore, proabably because I over distended it a little. I mean yesterday, after holding the instill for 2 hours, I tried again to pee it out, and nothing, just a couple drops came out. So, my husband cathed it out and got out 12 ounces. So drinking does not help it come out either I guess, and I even drank less this time as to not over fill my bladder. Becasue with the marcaine they use, I cant feel it when I am that full. That is why I wanted my doc to cut back more or switch the meds in the instill, but she wont hear of it. Her answer is that " this is what works".

Erika, I just dont feel that doing a hydro would serve any purpose. I mean I know I have IC already, they saw that through a regular cystoscopy, I cant imagine blowing my baldder up beyond it's capacity. That would be like taking a bad cut and stretching it out(ouch). Plus, I have retention issues with just a instillation, I cant begin to imagine what a hydro would do to my poor bladder. I know that some people get great help with the hydro's and that is great, but my gut instinct tells me not to do it. I was also told by my gyne that it is not that safe of a procedure and there are risks involved that they dont tell people. My hubby and I researched it and just found more bad things than good things about it. I guess if it was a last resort, then I would maybe consider it, but I would have to have tried all things other things possible first.
So that is where I am now. I do see a new urogyne on the 17th. I will see what he offers. Maybe he will be willing to work with me. That is what I need. I need a doctor who will also listen to what I have to say. I may not be a doctor or have a medical license, but I can read and do research just like they can and would hope that I could find a doctor who is more open-minded and willing to work with me and not let their ego or pride get in the way and to treat me as an individual not put me in a group where what works for one will always work the other. It is very hard though to find a doctor who is out there to actaully want to help the patinet. Now a days it is all about making money and that is all. It is sad. I have had maybe 2 good doctors in all my life that were actaully there to care for me, not make money off of me.
Thanks for listening ladies, I appreciate it.
Jen

[ICNDonna]

If the instillations are helping after the initial day or so, it seems like it would be worth it to continue. When I first started DMSO instillations it was very painful for several days afterwards for the first few treatments. Then I could see it was helping and that made it worth it.

Donna

[vm]

You've had such a time with these instills.... I hope the new urogyn is willing to take a more individual approach to your treatment and not such a "cookie cutter" one.

[kadi]

From what I understand about DMSO instillations is that they are initially painful because they cause a histamine release from the bladder cells. After a few treatments, the histamine is less & there is less painful reaction. That's why they often do monthly "maintenance" DMSO treatments - to keep the levels of histamine continuously lower.

This is not the case with heparin rescue instillations, they are usually somewhat soothing from the start. It really sounds like the nurse is making sense in that it is the quantity of marcaine that is causing the problem. And the lack of concern on the doctor's part about the side effects is troubling.