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True Success
Please don't think IC is a fate worse than death
I consider myself one of the luckiest people ever diagnosed with IC. After reading all the horror stories that you have suffered for such a long time with no relief, I am reluctant to share my story with you.
I exhibited urge incontinence bladder spasms, involuntary flatulence and frequency issues after extensive pelvic surgery to correct multiple pelvic problems. Prior to surgery I consulted a urogynecologist for a second opinion. The first urogynecologist performed urodynamics that indicated bladder capacity and retention amounts within normal limits and recommended surgery for stress incontinence.
At the follow-up visit after surgery my gynecologist diagnosed urge and frequency incontinence and a vault prolapse. He prescribed Detrol and referred me to the 2nd urogynecologist for evaluation.
The 2nd urogynecologist ordered another urodynamics evaluation. The results after surgery greatly differed from the pre-surgery test. The urodynamics after surgery showed a bladder capacity greater than 600cc and residual greater than 250cc. His diagnoses was vault prolapse with frequency and urge incontinence. To address constipation and uncontrollable flatulence (I call it the “walking farts”)
a rectal ultrasound and a rectal motility test were ordered. Can you belive that there are actually MD's that specialize in rectal ultrasound and rectal motliity? 
The results were within normal limits and no treatment was indicated. The urogyn prescribed physical therapy. PT was not the answer for me. He also wanted to do surgery to “take down the bladder sling” to correct the retention issues. I discontinued the Detrol as it decreased my urine flow to a dribble and did nothing to improve the urge or frequency issues. I returned to my gyn to discuss my treatment after completing physical therapy. When a residual showed with-in normal limits (30cc) he was quick to admit that he was stumped
. Because I had normal retention with this test, if I had the surgery suggested, my stress incontinence would have returned. 
I know my gynecologist felt guilt because he thought he had caused my problems. The only symptom before surgery was stress incontinence and the new symptoms appeared so quickly after surgery. I am sure that is why he was so diligent in finding help for me. He then referred me to a 3rd urogynecologist. My gyn insisted that if this urogynecologist didn’t know how to treat my radical symptoms that he would know someone that could.During my initial visit with the 3rd urogynecologist, who coincidentally was a specialist in IC, agreed with the diagnosis of vault prolapse, urge, and frequency incontinence. He also determined that on that day I had a residual of 300cc. In the past 10+ years of treating IC patients he recognized what seemed to be inconsistent symptoms for IC
. He wanted to give me a “cocktail” 
to which I replied, “Some how I don’t think that will be as pleasant as it sounds”. It was a bladder instillation. I could tell immediately that it was going to work 
. I was diagnosed with mild IC. I left his office that day with the appropriate treatment that arrested all symptoms. The first 3 visits were to evaluate the effectiveness of the instillations and the next 3 were for learning how to do home instillations. I had follow-up visits at 6 weeks, 18 weeks, 24 weeks, 36 weeks. I now return for follow-up visits every 6 months 
. He feels that because I was diagnosed early and the treatment is effective that my IC will probably not progress. My gynecologist admitted he had learned something.
He said he would have never diagnosed IC in a thousand years and wanted my recipe. I hope my “success” will help others. I do have to travel about 90 miles for follow-up visits as I live in a very rural area. I just use the trip as an excuse to shop in the “Big City”. I want to encourage those that are having problems getting relief to consider traveling a little further. It is well worth my trip.
My treatment is home instillations as needed (about every 3 days):
lidocaine 8cc
heparin 10,000 units
I have saved my self a lot of time and money because I keep a medical folder of all test results, radiologist reports from x-rays, MRI’s, and operative notes from all the procedures and surgeries I have had.. The folder is now a 3” binder. The MD’s always comment how helpful the information is to them. Sometimes I still have the test again but they have the results and can compare to the other results. If you ask MD’s for a copy of the notes they will give them to you. The hospital may charge but I think they have to give you 1 copy without charge. I keep this information for my knee problems too--6 knee surgeries TKA on one knee and looking forward...NOT..to another TKA on the other knee in a few years.
Thank you for allowing me to share my success story.
I hope that this story will encourage you. My urogynecologist is an advocare. He told me that if I should need to do anything else not to worry he had "lots of tricks in his bag". I don’t have any idea how many of you must feel because I was diagnosed while in an early stage of IC. As I read your post I literally am so thankful that I have been so fortunate.
My urogynecologist agrees that the nature of the disease is unpredictable, there is no cure, and sometimes finding treatment can be difficult. He also believes that IC is a lifelong condition but there are effective treatments can reduce or eliminate symptoms. He has noted that he is seeing a pattern that makes him believe that IC is a genetic disease that manifest itself after bladder trauma. Before the first visit with my urogynecologist I didn’t know anything about interstitial cystitis
. I couldn’t even pronounce it.All of my doctors have made me aware that the nature of this disease is unpredictable and that old or new symptoms can appear from out of the blue. All my medical professionals are approachable and truly have my interest at heart. I do not worry about “what if something happens” because my PCP, gynecologist and urogynecologist or their nurses are available 24/7. They are really there because I have used the numbers, after hours, on weekends and at midnight. I know I will always have the help I need when I need it. Do I feel lucky? No I believe in the power of prayer, and so do they.
2006 Update:
Instills are still the only treatment I need to control all IC symptoms. I recently had another urodynamics to determine the extent of my vault prolapse. Results show that my bladder retention was within his “normal limit” of less than 125cc. The capacity is still 600+cc. and that will not decrease.
I had extensive pelvic reconstruction in 2004, that included and ooprhorectomy and repair of bladder, small intestine, large intestine, and uterine prolapse. I developed valut prolapse a few months after surgery. My urogynecologist wants to wait until my symptoms are more bothersome before doing the surgery for vault prolapse. Hopefully this will take care of everything. When I have that surgery I think that I will have had everything repaired that can prolapse.
2007 Update
6 month follow-up: Everything is still going great. The number of instills has basically stabilized at 3-4 a week. All symptoms are controlled with treatments. I have no food sensitivities so I am able to eat any thing I want (which is to my disadvantage because I do).
2009 still no problems Everything is still going great.
Kari 
:woohoo:
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