1st follow-up visit, what should I ask dr???

[lunaticwoman]

Cycsto and hydro done 6 weeks ago. Did not help. Still in pain every single day, some worse than others. I've been watching my diet carefully (gave up Diet Coke!!!) and some nights I'm doubled up in pain. The pain clinic rx'd vicodin, which doesn't always help. I take it every day.
What intelligent questions should I ask the URO tomorrow? I read this site all the time and there are SO many different treatment options!
Will he be able to tell me just how bad the IC is?
Can't go to work smelling like garlic after those instillations. And WHO has the time to go that often???
Emerol scares me cause of the hair loss issue, even tho I know it's only a small % of people...I would be one of them...just my luck. I'm already depressed, and that would surely do me in.
I never even knew where my bladder WAS till all of this.
I don't have the frequency issues at ALL. Only the constant bladder pain.
Thanks for all your help in advance!

[ICNDonna]

All of us have different questions; my suggestion is to write down questions and concerns as you think of them --- then take the list with you to the doctor's office and jot down answers. I responded to some of your concerns via PM. Let me know if I can be of more help.

Hugs,
Donna

[Katrina]

I would ask for some idea as to how severe your case is. I was tested in a much less definative rating method and my doctor still was able to tell me that my reaction was considerably worse than he had seen in quite a while. All that really means is I was really suffering but that gave me some idea of how hard we should fight.

Treatment plan A, B
in my mind treatment can be in two categories...treating the gag layer and your symptoms...both very important and I would want both addressed.
Flare plan?
does he suspect any of the common contributing conditions? (I would put IBS and PFD high on that list)

the kind of instillations you are speaking of are called DMSO. An intellegent doctor should not use that as his first treatment option. Doctors informed on the current best treatments would recommend rescue instillations first....you can learn to do them yourself and not go to the doctor much about them. Much less problematic and work similarly to Elmiron and a pain med together....directly on your bladder. If you are fearing elmiorn...than rescue instillations are a great option because it is a different medication (heparin) and the side effects are often only from the catheter. I don't believe hair loss to be one of them :)

I didn't have much frequency unless flaring either....but was always in a lot of pain. I loved rescue instillations and had no problem with Elmiron ...it might be worth the risk someday but if your scared now it may not be the right time.

Well I think you asked a very intelligent question and will get some great replies so will be very prepared for you doctor visit. I hope everything works out for you! Thanks for what I suspect will be a great thread! :)

[Skynard]

There are so many questions to ask, and if you are anything like me, it will be an emotional time. I actually took a friend with me as a note-taker. It helped tremendously! I couldn't remember half of what we talked about and then I went back through the notes. I still review them from time to time. My initial questions were: how to stop the pain NOW (drugs - emergency and otherwise), installations or not - have them explain the different kinds and the potential SIDE EFFECTS (I did DMSO the first two times and it made it worse, so we switched to Marcaine and I have two more of those), what do I do when I have a flare - exactly what number do I call to get someone immediately, what non-traditional treatments do his/her patients find helpful (I am trying Cystoprotek and DH Aloe Vera), do any of their patients find success in accupunture, how many IC patients do they have, what do they think about biofeedback, you also want to see the photo of your bladder and have the entire disorder explained to you so you can understand it and begin to deal with it, did we catch it early enough to get it under control, ask for samples for meds or Cystoprotek, (I got a savings card for Elmiron), ask if they know of anyone that is currently doing a study and can you get in on it if available and see of you can get a TENS unit. These are just a few that I thought of. I try to take a notebook with me everytime I go, even if it is to see the nurse during installations. It can be overwhelming at first. Whatever you do, be the kindest and most grateful person when you go - all the people at the office, including the person that answers the phone are going to be the link for your journey back to health. It has helped me get appointments sooner and calls back from the doctor or nurse a lot faster than the normal channels.

I wish you well - I will be enjoying an installation while you are visiting your doctor. I will keep you in my thoughts and prayers!

God Bless.

[lunaticwoman]

THANK you for all your replies!!!
My appt was not very encouraging. This is 6 weeks after the hydro/cysto. I have all the bleeding things (whatever they are called!) on my bladder, and my bladder only held HALF of what it should have during the procedure. So without the dr. saying it, I got the impression from him that it is a very advanced case. He said that everyone asked how bad theirs' is, and it's as bad as your symptoms. In other words, you can have a "mild" case and have alot of pain and frequency...different for everyone.
I was very prepared with my IC book and had many questions...alot from all your replies. He was very impressed.
Bought some Prelief on the way home. He also gave me a phamplet about Cysta-Q....anyone heard of that???
I'm going to try this stuff for 3 months. If it doesn't help, then some anesthetic intallations.
He wants to try one thing at a time so we can see what exactly will work.
He did say, (cause I asked) that he does have patients that he cannot get out of pain.
I told him I was mad at him from the last appt for referring me to a pain mgmt dr., but told him now I know he did me a huge favor.
So. 5 Vicodin/day. Stay on diet. Try the Prelief and Cysta-Q. I pray it works. This is totally messing with my life. (as all of you can relate to!)