Hi, I was diagnosed with IC in 1991. I was 21 years old. I am now approaching 43. I manage with diet, but it does cause issues at work. I was home for 10 years so it was not that big of an issue until I re-entered the workplace after my divorce and putting my kids in school (I homeschooled them until high school - could have easily homeschooled them longer but divorce prevented me). Anyway what's your story?

Gwena

Hi! I was diagnosed with IC (finally) just a couple of weeks ago - though have likely been struggling with it for years. This whole IC diet thing seems pretty challenging. I'd love to get some low cal IC friendly recipes/suggestions. . .Shelly

Hello there!

I see that this is a small group and no new posts for a few months. Please respond if you are still using my fitness pal. I have had the IC diagnosis for only a short time (almost a year). I did instillations, physical therapy, Elmiron, Amitriptyline, and Tizanadine. I tend to play with my medications quite a bit to see what will work/not work. I have found that I need to keep taking the Amitriptyline and Tizanadine to keep virtually symptom free. I have periodic back pain and occasional frequency, but the horrendous pain is kept at bay with the ami. My doctor (Charles Butrick--highly recommend if you are in the Kansas City area) has been a godsend and he feels most of my major pain is from pelvic muscles rather than the mild inflammation he found in my bladder.

Unfortunately, I am gaining weight from the amitriptyline. I have tried cutting my does from 25 mg to half, but the pain came back in both my pelvic muscles and bladder. I found this site and am hoping that if I start to monitor what I eat more and exercise more, then the weight will come back off. Before this site, I have found that I can stop the gain, but having trouble actually losing.

Anyone else on amitriptyline? Thoughts? Alternatives to amitriptyline to control the pain?

I was diagnosed quite recently, a couple of months back. I find that amytriptiline and cimetidine combined with the IC diet help keep my flare-ups at bay most of the time, but sometimes I will have a massive bladder flare for no reason at all that I can tell, and mild pelvic flare-ups are a fairly common thing. I had a cystoscopy this week that revealed no cysts in my bladder so now being referred for pressure tests...but I am lucky, my case is controllable most of the time. I do feel so much better since I started the diet, not only in terms of my bladder and pain but my whole body feels healthier.

If elavil is working for you then why try something else? It's so difficult to get IC pain under control because of hormones, diet, stress, and just plain driving too long in the car. If it helps I say stay on it! It worked minimally for me but I had other issues otherwise I would have stayed on it as well.

I think we ICers need to give ourselves a break and realize we are more complex than people just wanting to lose weight with no other conditions. We want to lose weight but also be able to live somewhat painfree lives like everyone else. If that means we are not our former IC weight but we are comfortable I think that is a blessing.

Ok now I need to read what I wrote and keep pounding it into my thick skull and believe it too!