Frustated

[rascal]

I was diagnosed with IC on February 22, 2007. During this time they also did the stretching of my bladder with the DSMO. They found that i also had a very small bladder. Holds only 200 cc. They were able to stretch to 250, but it did not work. I have tried tons of medications for the last 3 years and they just thought i had OAB. Tried to tell them it was something else. Anyway duri g the stretching of bladder they found all of this. Doctor said it was pretty bad. He started me right away on the Elmiron, 100mg, 3 times a day. Need to take for 4 to 6 months to see if it works. My Urologist has done all he can for me. He referred me on to Kansas City to Dr. Greibling. It took me 4 weeks to get into see him. He is the top urogynocologist in Kansas. I am going to have an Interstim Therapy Implant, but right now am waiting for Insurance to approve. This was to be sent to insurance on the 19th, have been staying in contact with insurance company and the insurance girl from the hospital. Doctor went out of town for conference, only got back last Friday, the insurance company just recieved faxed info yesterday the 27th. The girl at insurance said she would fax a priority to the committee when she faxes the rest of the information. I am to call her Monday to find out anything. I had a bad flare up that started Sunday and i went into work long enough on Monday to do payroll, then went home. The only time i don't hurt is when i take a hot shower. I did that several times on Monday and on Tuesday, went home at noon then. I am back to work today (Wednesday) still in a lot of pain but trying to ignore, i just can't miss work all the time. Nothing seems to help and it is just good to know that their are others going through what i am. No one really knows what you are going thru, you can try and explain it but if you haven't been their you really don't know. They are supportive and my husband helps a lot, with stuff around the house and cooking meals and etc. I just sometimes really don't feel well. So right now i am in the waiting game. I have to pick up prescriptions on Friday for Amitriptolene and Elmiron, which are going to cost me. I don't have prescription on my insurance but do have 125 Plan, I have already almost used up my 2400 i alotted for the year. Well thanks for letting me vent. I enjoy reading the post from everyone. Well i have made this long enough. Till later.

[Roxie2007]

HI! Sorry to hear you are having such a time with insurance, dr.s etc. IC makes life difficult.....that's for sure! I hope you get the interstim ok'd and it helps you!
Elmiron and Elavil has helped me tremendously! Elmiron isn't cheap.....luckily Elavil is.
So you having the interstim before trying medication? That's quite a jump.
Good luck to you! Roxie

[Berkshire Road]

Can you get a referral to a pain clinic? Many of them will prescribe narcotics, which is what a lot of us need just to be able to function. And the good news is, generic narcotics are usually relatively cheap.

I'm so sorry you're in the waiting game; that's probably the worst stage.

I also think it's unusual for them to go right to interstim (which does not help with pain, most of the time, but only frequency), before giving meds a chance to work. I've never heard of that. Interstim requires two surgeries and recoveries; it's a pretty big deal.

Well, whatever you do, I wish you good luck and much less pain!

[stacyY]

IM so sorry to hear you going threw so much. Its hard to face daily I know. Its wonderful you have family suport.
Im not sure where you live, But in my state, there is a prescription help, threw the family independant agency, its where people go to get medicaid, or if your pregnat they help pay the insurance, and where you go to get food asistance.
I went there before i got my insurance, they offer a prescription card, no matter what your income is, and its so much cheeper. Maybe your state had it. It might be somthing worth looking into to help cover some of your costs.
OR go to the health department in your town and tell them you need help with medican coverage. I am sure they can offer some help or information, and it wouldnt be determand I think by your income.
Good luck and i hope you can get soem relief. Do any of your docotrs have you on muscle relaxor like Elevil or Flexeril? THEy both seem to help also. THe Elivil helps a lot, if you are on it and its not helping some times it takes increasing the dosage to get the proper relief. Im on 150mg right now and also the flexeril is 10mg. My one doctor said to me some women are on even higher dosages, it just depends on each person.
I can relate to you missing work.I have been laid off from work for a month now. Before that i was missing 1-2 weeks of work. WHich now looking for a job, I just dont know what to do about that either.It makes me worried thats for sure. I can really relate to you. Hang in there, and i hope you will be feeling some relief soon.
take care
stacy

[ICNDonna]

I'd have to agree that you should be trying other treatment options before moving to the interstim. Hopefully the amitryptaline will help with your pain. It does help many ICers.

Warm healing thoughts,
Donna