Interstitial Cystitis

by **obeeone** on Mon Sep 17, 2007 9:57 am

I was diagnosed with IC in March of 07. I have been on Elmiron for five months, and still I live with the pain of this every day. I have cut out acid foods, caffeine, and other foods that may irritate the condition, but to no avail. I have to take Xanex every night so the pain will subside. I go to the bathroom at least six times at night after waking up with excessive pain. Is there anyone else out there going through the same misery as I am. This condition seems like a mystery, and all my Urologist tells me is "It takes a long time for the Elmiron to make a coating around the bladder, so be patient. I have been patient!!!

by **UroDoc** on Mon Sep 17, 2007 10:14 am

Although technically for frequency and urgency, Interstim, usually has some effect on decreasing pain because it shuts down the C nerve fibers which transmit pain, something to discuss with your doctor. Or find a urologist that does the procedure, Medtronic the maker should be able to assist you in finding a doctor in your area, good luck

by **Tracey83** on Mon Sep 17, 2007 12:11 pm

I just joined today, but have had IC since I was about 23, so that is almost 20 years. I am considered a severe case. I had the interstim back in 2002. It definitely helped with my urg/freq. I was going or felt like I needed to go every 15 minutes. At night, I could live in the bathroom because I never felt I would empty and as soon as I got back in bed, I had to go again. After my interstim, my freq/urg drastically decreased, as did my pain leve. I still have pain almost daily, but nothing like before my implant. I have about 2 flares a year.

by **UroDoc** on Mon Sep 17, 2007 12:27 pm

Thanks for sharing, glad to hear Interstim is helping you.

by **_Amanda_** on Mon Sep 17, 2007 7:34 pm

Obeeone, what you are experiencing describes me almost exactly! I was also diagnosed in March, have been taking Elmiron for 6 months and Hydroxyzine for about 4-5 months. I've also completely modified my diet.

Elmiron has semi-worked for me. I used to use the restroom every half hour, and now i'm using it every 1-2 hours. However, when it comes to pain, each day is different then the last (which obviously means the Hydroxyzine isn't working). One day I could be fine and have absolutely no pain, and the next I might not even want to do anything!

I hope you find relief soon. Just know that you're not alone in what you're experiencing. =)

by **_Amanda_** on Mon Sep 17, 2007 7:36 pm

What exactly is Interstim?

by **Tracey83** on Mon Sep 17, 2007 8:22 pm

I thankfully have a wonderful doctor that I see every month. I keep myself well informed of the meds I am on, what treatments are out there and make him listen to me. Alot of ladies in my area go to this same doctor. I am completely aware that I will probably never have my life back, but my interstim and doctor's advice and meds have certainly made my life as normal as possible.

The main thing that most IC sufferers deal with is explaining their disease. It took me forever to finally get my mother-in-law to understand. She would make comments like you were fine yesterday...It was like I use IC as my crutch to get out of things. I think that she finally understands after many years that I have a real disease and it's not going away. Yes, I did go into remission for a couple of years shortly after I first had the symptoms. but it came back with a vengence.

Here is a post, I got from another site. I sent this to my mother-in-law.
http://www.kuat.org/misenplace.cfm?ID=826

by **UroDoc** on Mon Sep 17, 2007 8:31 pm

It is much like a heart pace maker but instead sends a a signal down your 3rd sacral nerve which controls your bladder. There is a testing phase and if that works it is implanted under the skin. You can find out more info on this website http://www.womenshealthchannel.com/incontinence/urge/treatment_surg.shtml

by **Erika Singleton** on Tue Sep 18, 2007 2:16 pm

I had to quit taking Elimron. I broke my out in an rash. I have now started the installments. Maybe you can talk to your doctor about installments.

by **obeeone** on Tue Sep 18, 2007 2:52 pm

I too hope you find relief soon also. I have heard about Interstim, and am going to ask a new Urologist I am seeing tomorrow about this. Apparently the Elmiron isn't working for me. I have pain everyday. Thanks for your reply. It is good to know I am not the only one out there.