2nd Instill today and...

[Cindy B]

The nurse said I was so inflammed and it took her 4 tries to cathaderize me. I swear I was in hell. I felt so sick all over that I dont know how I made it home. I bled all afternoon.

So...listen to this. My URO said he wanted my pain management doctor to handle all the pain meds, which was fine until I talked to her. She has no problem giving me Bentyl and Baclofen but she doesnt feel comfortable in giving me any thing stronger because she's worried I'm going to kill myself???!!!!!!!! I told her I dont know where you got your information but If wanted to do that, I have plenty of things already in my med cabinet to handle that. I couldn't believe it. I talked to my pshych dr and told him about this and he said he would call her and talk to her. When you have this much pain and you are doubled over, are you supposed to be all smiles or something? What is this woman's problem? She had no problem giving me a 75 mg Fentanyl patch...I dont get it. I need something besides the ultram for when the pain gets really bad.

Does anyone else have the following: As long as you are quiet and dont do much your pain is maybe a 4 or less on the pain scale and then if you get up and walk around or climb steps, do housework the spasms start up and your pain level goes up? Would you call this a mild case or is that normal for it to act like that. My intils are a mix of 1 Elmiron Capsule, LIDOCAINE VISCOUS, Kenalog, and Sodium Bicarb. Is this the norm? Oh and they used a 10F cath. I think I told you a 16 before and I was wrong...

[jen74]

Hi Cindy.
Gosh doctors can be so ignorant. I swear half of them should not be allowed to practice medicine.
I cant imagine it taking 4 times to try and cath you. Maybe she just does not know what she is doing! I had one nurse try and cath me and she sucked!! She also had a hard time. But when I had it done again by a different nurse, it was no even that bad. So it depends on who is doing it, trust me.
DId they use a 10 fr catheter to do your instill? You are lucky, my uro nurse uses the bigger ones, I belive the foley ones, or at least the 14 fr.
I am on my third instill of marcaine,heperain,kenalog,and biocarbonate. It helps some, but I am still getting alot of pain. I also have a reaction every time I do the instill. I am unable to pee at all and have to cath the meds out. It is pretty scary. I was not sure if I should even continue or not. I am seeking another opinion with a new urogyne next week in hopes that he will be better. This one I see now that does the instills is very opinionated and does not want to work with me. She believes her way is the only way.
Anyhow, I do hope you feel better real soon. Also, I am glad your pshyc doc is going to call her and talk to her. That is the bad thing about having depression, the docs always want to blame everything on that from what I have read from some people who do have depression. It is awful and my heart goes out to you.
Jen

[Cindy B]

Thank you Jen,

The nurse said the reason she was having trouble is because I was so swollen and inflammed in the urethra. She tried to be as easy as possible and used alot of lubricant and lidocaine but that lidocaine burns me..no matter what the say, IT BURNS. She kept apologizing and I know she was sincere. She said if it didn't work on the 4th time she would not try it again and she would get the doctor to give me something for the swelling.....so I dont know. I hate to leave this doctor because he really seems like he's good, but we shall see. The nurse did say that if this treatment didn't work he would probably do a distention (I'll be asleep) and see if that would work. *shiver* Just the thought of that makes me shiver. LOL

[jen74]

Hi Cindy.
I know that the distention has helped some women on here, but it also has made some worse. If I were you, I would try every possible thing first before having a hydro done. I know that they put you to sleep, but you do have to wake up.

I am not saying you should not do it, just giving you my opinion. I myself will only do the hydro as a very last resort. Again, that is just me. Everyone is different.

I also never get any releif when they use lidocaine gel. They say it numbs, but it never numbs my urethra either. Yet when I have the instill and they put in the macaine, It numbs me so much my bladder wont work at all. Go figure.

I do hope the instills start working for you. Has your doctor ever thought about giving you a trial of steroids to help with the swelling since it is that bad?
Jen

[Cindy B]

I actually just got off the phone with the nurse, I told her how much burning I was having today, more so than usual and she said she would call in something like Uragel? I think it was something like that. I know it had the Ura part in there. LOL. Well see how this works. It's in pill form so if this works I'll treat it like gold.

Jen, does your pain get worse when you're active and then when youre resting it gets better?

And as far as the destintion goes, I'm in no hurry to do that. I sounds like I'll be in pain when I wake up so....no thanks.

[jen74]

Hey Cindy.
I do get worse sometimes when I am moving around. But then there are the times when it does not matter, I could be laying in bed and still have bad pain. I would think that it would be worse when walking or standing since all your organs are putting pressure on the bladder when you are standing which in turn makes the pain worse.
I hope this new med helps you. WHen you find out the name, please let me know. Was it maybe called urelle? I know this pill will make your pee turn blue. But hey, what a small price to pay if it helps you
Jen

[Cindy B]

It WAS Urelle...that's it. I dont mind blue at all...it goes with my eyes.

[jen74]

I hope this helps your pain Cindy. I am keeping my fingers crossed
Jen

[beandip]

I think my doctor would give me anything I want for the pain. Personally, all of the bladder muscle spasm medicines do very little to help the pain. I use percocet.

When I was in a really bad flare, before I was diagnosed, they gave me morphine in the emergency room, and I still felt the pain through that. I firmly believe that you should not be in pain; it is not good for your body. I am definitely not a doctor, but I would find a doctor to give me what I needed to find relief. Please be firm in standing up for your rights.

Plus, I have end of the day pain which my doctor told me is from being on my feet all day, so apparently the pressure is not good for the bladder. Hope this helps. I hope you find what you need!

Colleen

[stacyY]

Hi Cindy
I know how you feel. My Uro also feels i should not be on strong pain medician. I was taking Vicodin and she had a fit about it. It helped some what but never took the pain away.
I also take Ultram which takes the edge off but not 100%. I take Flexeril nightly and during the day when needed, it does help. I also take Elevil, 150mg at night also. Since i have been on that it helps so much also.
I dont know what doctors thinks. When we feel pain every day, we start to build a tolorance for it. So by the time we acculy feel so much pain, its 10 times that of a normal person can feel.
I can honestly say i have pain ever day for the last 10 years. There is never a day gone by where i dont feel something.
I know who you feel. I cant walk up stairs, exercise properly, walk long ditances, bend over lift things(which due to that i was not able to do my job propersly and have to move to differant class).
People really have no idea who life changing all this is.Some days to jsut get up in a sitting walking and going to teh bathroom is a huge chore. Even to go to the bathroom is a big thing now adays for me.
Really you should print out some of these black out names for privacy, and let your doc read how we really live our lifes, see the pain we have and how we are lucky to function daily.
I am so sick of doctors they have no idea about things. I really hope you will get het help you need. You can also try a new place if its possible then maybe you can get the help you need too. best of luck to you.

take care of you.
stacy

[L. Thomas]

Do the instills help? I have a different recipe but I can do them as I need them, even more than once a day.