Frustrated

[Sam1982]

I've had IC for about a year, diagnosed this past July. I had a good few months earlier this year (IC went into remission for no reason I can tell). Things got bad again in June and I was diagnosed by urologist in July. She started me on Elmiron and added Elavil a month later. I am also taking Enablex. My main symptom is frequency- I need to go about once an hour. I have intermittent pain- feels lime my bladder is full of acid when I need to go. My urologist says the Elmiron should e working by now, but Ive had little improvement. She would like to try Interstim, but I am having trouble getting approval from my insurance.

Are there any other treatment options out there that I'm missing? I'm so sick of this. And yea, vie been following a strict diet.

[rizzimoore]

So sorry for your frustration!

I am so sorry to hear about your struggle. I can somewhat sympathize although I'm coming up on a year of symptoms in a few months. Just diagnosed about a month and a half ago. I am also no Dr., but I would definately try some other things before interstim. That seems like a very big commitment that should be tried after many other things like diet, other meds, physical therapy, TENS units, etc. I just read the book "The IC Survival Guide" by Moldwin and it lays out all the options in plain english. Maybe it will help?? I have just started physical therapy and it has really helped my frequency!! I am amazed! I have gone from 15 urinations in a day to 8 in two weeks. I have also had a series of "cocktail" instillations that haven't helped yet, but I don't think they are necessarily supposed to until a few weeks after the last one so I'm hoping for relief soon (today was my last one!). Best wishes to you!! Hang in there...

[kadi]

Hi Sam,
Elmiron can take up to 9 months to reach full effectiveness, so July to now might not show if it's going to work or not. I do home instillations (marcaine, sodium bicarbonate, heparin, sterile water) and those have given me back a good quality of life. I would look into those before Interstim which is very expensive, invasive, and has a so-so success rate. I'd also try physical therapy first. I also had Interstim recommended to me, but decided to try these things first and I'm doing well today.
Wishing you better days soon,