Living with Interstitial Cystitis

I am 28 years old and was diagnosed with IC 2 years ago. Below is a brief (or not so brief) timeline of the tests and treatments I have tried…. My doctor mentioned the Interstim Therapy to me a few days ago.. I have been researching it, and it doesn’t seem worth it to me. For every great story I read, I read two bad ones…. I am also thinking about the Botox Injections. I have a call in to my doctor about that. Has anyone else here tried the Botox? And how did it help or not help? Any information would be great.

Here is my rough timeline of the past two years:

July 2007: Began having symptoms… Thought it was a urinary tract infection.

August 2007: A cystoscopy was done to make sure I did not have kidney stones I did not.

September 2007:
After months of getting nowhere, IC had been mentioned to me by my aunt, who is a nurse. I then mentioned it to my Dr. at the time. I was tested for IC using the potassium sensitivity test. The nurse who performed the test felt that I did have IC I was started on Elmiron and Atarex. The Atarex made me too drowsy and I stopped taking it. Continued on Elmiron for approximately 8 months (did nothing).

Had MRIs, one with dye, one without. All that was found was a small cyst on my right kidney, which I was told was nothing to worry about.

Saw another urologist who did a hydrodistention of the bladder. From this procedure, he felt that I definitely had IC.

Was also diagnosed with Sjogren’s Syndrome. Was started on Plaquenil and steroids. Steroids were taken for full prescribed length of time (approx. one month). Plaquenil was taken for several months and then Sjogren’s symptoms weren’t too bad, so I went off of it. (I think the symptons getting better were partly due to Aloe Vera pills, which are explained later)
(Sjogren’s symptoms included joint pain in legs, back and tremendous shoulder pain)

October 2007: Began 7 weeks of DMSO treatments. IC was not too bad during this time except for the days I had the treatments. Treatments were painful and IC seemed to come back after they were done.

November 2007:
DMSO treatments over.

Read about Aloe Vera pills (Desert Harvest) that seem to help IC patients. I started taking those and still take them today. I think they help the Sjogren’s, if not the IC.

January 2008: Saw an herbalist for my IC. Decided to try natural remedies since medications did not seem to be helping. Tried this for several months.

Summer 2008: Saw, yet, another urologist. She did not do any testing. I had brought with me all test results prior to that appointment. She looks over all results from all testing and felt that I did NOT have IC. She felt I had hypertension of the bladder. She prescribed me two medications and told me that whenever I had a “flare up”, I should try them. One was to lower the acidity in my urine, and I can’t remember what the other did. I cannot tell if they helped or if the flare ups just went away on their own, as they typically do…
These medications were Potassium Citrate and Prosed-DS.

December 2008: Saw another new urologist. He had me try Enablex, which I am currently still taking. It does seem to help, but does not get rid of flares. I do not feel that I would want to stop taking this.

April 2009: Saw an allergist. I originally made the appointment to test for my milk allergy, not thinking about the IC…. he felt maybe there was an allergy causing the IC. He didnt find anything he thought was causing it, but did have me try two allergy medications and thought maybe they would help. These medications were Singulair and Allegra. My IC seemed to be worse on these. Not sure if it was the medications or if the IC was flaring on it’s own, but I stopped taking them just in case.

IC has caused me:
Lack of sleep due to getting up all night to use the bathroom
Depression
Constant worrying about current and future plans. (Can I take a vacation? Will my IC be bad then? Will I make it through my friend’s wedding? What if I get stuck in traffic today? Etc)
Unable to eat / drink mosts foods / beverages because not only do I have IC, I also have food allergies (dairy).

Testing/Procedures Done:
Potassium Sensitivity
Cystoscopy
Hydrodistention of the Bladder
Bladder Ultrasounds (both with a full bladder and an empty bladder)
Kidney Ultrasound
MRIs

Treaments/Medications Tried:
Elmiron
Atarex
DMSO
Aloe Vera
Potassium citrate
Prosed-DS
Enablex
Singulair
Allegra

I do believe that there are a LOT of IC patients out there that are a lot worse than me. When I am not in a flare, I feel fine… Flares last anywhere from 1-2 weeks…. (I am in the middle of a flare right now).. Typically, I do not get much pain. It’s more on the urgency and frequency end… and i mean FREQUENT.

So any thoughts on the Botox would be very much appreciated.. or even on any other things you’ve had good luck with..

Thank you.