I'm just looking for some inspiration

[lcleave1]

Hi there,

My name is Lori. I’m not a newbie but I am. I was diagnosed with IC 5 years ago in April, when I was diagnosed I was on this website religiously but then I got better and I grew away from it. I am back on now due to my IC coming back to greet me full on and I am hoping for some words of encouragement. When I was diagnosed I started taking Elmiron, Citalopram, and some Pyridium, when needed. I followed the diet faithfully and took 6 weeks off work. When I was diagnosed they explored my bladder and did the expanding of the bladder and it put me in a 1 month tailspin. I went back to work and it took about 6 mths but then after that I forgot I even had IC. I would say for almost a year now it has been slowly creeping up on me but I didn’t notice with a busy life and 2 kids and well now I am in a full blown flare. To be completely honest I haven’t followed my IC diet at all for about 3 yrs. I didn’t eat a lot of acid foods but I wasn’t concerned about BBQ sauce on my steak, or 3 cups of regular coffee a day either so yes I know I have myself to blame. I have been back to the doctor and he now has me on Elmiron still, Imiprimine, Hydroxyzine, and they have ordered me Pyridium. I have been following the IC diet strictly since Sunday May 1, 2011. The frequency and urgency has calmed down a little but I’m still experiencing burning down below bigtime and the frequency is still rather bad. I am seeing spots of blood when I wipe, can your bladder cause this? I was just at the Gyno in November and he did a Thermal Ablasion due to really bad periods. It mellowed down my periods but they are still coming. I have had menstrual breakthrough bleeding for years so I am pretty sure the bleeding isn’t coming from my bladder because it goes away right after I ovulate. This flare started the day I got my period and has let up abit but still burning and frequency and urgency. Can anyone tell me if they have had a flare after 5 yrs of being healthy and if so will it go away if I behave and how long will it take before I feel human. I am so afraid that my bladder is not going to heal. I have been on Elmiron the entire time, why would the walls of my bladder break down again?

[Becky Jane]

Hi Lori, Im kind of going through this right now myself. I was diagnosed in 1997 by hydrodistention and cystoscopy. That put me in remission with just very mild flares until 2006, I was put on Elmiron then and was symptom free until 2007, was put on hydroxizine and was symptom free until about a month ago. Like you, I wasnt being real careful of what I ate and I had cut back on my meds to only one a day of each. I think my flare that Im currently having has to do with hormones. Im 49 and premenopausel. I am starting to feel better now after going back on the IC diet and full meds. Im also taking Glucosamine, chondroiten, MSM and quercetin. I went to the uro today and he started me on Elavil too. Im hoping we both start to feel alot better soon

[Linda May]

More than likely if you get back on the same routine you were on with the first flare you have a good chance of remission again. If not your uro may have to try a new kind of treatment for you. I wish you well real soon.

[lcleave1]

Thank you.

Thank you so much for the encouraging words. I sure hope I begin to feel better soon. I remember last time i was at this phase I never thought it would ever end. We are going to get through this.