Can anyone help me please?

[Brooks34]

Hi there, its been a long time since i have posted. I was diagnosed by a doc 15yrs ago with IC, but at that time he just called it a spastic bladder that was really irritated. I had a Cscope done on thurs by my new uro and he confirmed its Ic. Ive seen my uro before and he put me on elmiron and neurotin and enablex, all 3 of them made me really sick to my tummy, so to me it wasnt worth continuing taking them as they were causing more problems then they were solving. I have been in one constant long flair for months now. I have the Ic cookbook and live by it, but lately it doesnt seem to be helping. My doc said the only thing left is the interstim for me to try. I however really dont want to do it, its only for urgency and frequency, those arent my main problems, my main problem is the constant pain iam in. The interstim isnt going to take away the pain.
Is there anything I can try for the pain Im in?
Where do I find a qualified Pt as I also suffer from pelvic floor disorder?
Do I find a new uro as he only thinks the interstim is the only way to go?
Where do I go from here? as right now I feel im completely out of hope, and there is nowhere to go. If anyone can offer any tips I would really really appreciate it. Thank you

Jo

[leelee88]

Hello,
You really do need to find a new URO or ask the one you have about another pain alternative, like Elavil or Lyrica and when you are flaring something for spasms like urisit, ulmar-t just some kind of anti-spasms medicine. There are so many other meds you can try.. Only way to find the ones that one is just trial and erra thats what im going through right now.. Good luck:angel:

Ronda

[tigger_gal]

Jo, you have only tried 3 meds is this right? If so, there are still plenty options to try. If your uro only wants to go the interstim route without trying different meds, heprin instills, and hydro's, I would find a new doctor. I have the stim, and you are right it is not for pain. I see you are in Michigan, so am I.

[GriffsMommy]

If your pain complaint is pain then maybe ask for a refferal to a pain management clinic, they are supposed to be great. I don't have any in my area, so I am not going to one myself.

I know there are also other meds to try before even thinking about the insterm including instills like Tigger mentioned. Hopefully you'll find some relief soon, but I have to agree with the others, if you are not happy with the options your uro is giving you maybe it's time to find another uro.

[Brooks34]

Will having another hydro help me at this point? I had one 15yrs ago with the first uro i saw. I was awake and my new uro told me he does not do them when the patient is awake. Also will the instills help with the pain? Ive read about them and would be willing to try them. do they all leave you smelling stinky though? lol. Christine I noticed you said you were on continuous bcp to stop your periods. Have you heard of the drug femara? it was a godsend with my endo.

[GriffsMommy]

No, I've never heard of Femra. My gyn wanted me to stay on the same bc pills that I was on before. She was afraid to through something else into the mix with all my other problems and new meds I was starting.

I haven't been back to my gyn in quite a while, she is the one who first suggested IC but then wasn't willing to try treatments like Elavil so that's when I went and found my uro on my own.

[tigger_gal]

15 years ago is a long time. You may find great relief within a month after the hydro. What insan idiot dose a hydro awake.. geesh. You can also ask him if he will do a heprin treatment while you are under sedation. My mom done dmso for years and had great relief, then they stopped them and went thru hydros. Donna gets hydros alot and she has great success.

[Ginny]

Before I knew I had PFD I just had constant pain that I thought was all IC. When I went to Dr Moldwin he was able to help me figure out what pain was from what illness. Anyway, he treats PFD with 2mg valium twice a day. Sea salts baths twice a day. Wow, it made a big difference.

It's hard to get a doctor to prescribe valium but it is such a low dose. Try your primary.

Feel better.

Ginny

[Brooks34]

Before I knew I had PFD I just had constant pain that I thought was all IC. When I went to Dr Moldwin he was able to help me figure out what pain was from what illness. Anyway, he treats PFD with 2mg valium twice a day. Sea salts baths twice a day. Wow, it made a big difference.

It's hard to get a doctor to prescribe valium but it is such a low dose. Try your primary.

Feel better.

Ginny


Ginny, dr. moldwin sounds familar,, is he a endo doc? Sea salt baths sound really nice, lately I have had a hard time taking baths, it seems to bring a IC flair on. Ive switched to using all hypogenic free soaps and it doesnt seem to be helping to much. How much of the sea salts do you use in your baths? I dont think Ill have much luck with my primary doc with the valium, she doesnt even believe IC exists. I see her only for sinus infections and not much else.