www.incontinentsupport.org

Rope Wrench.. I think i might be also suffering from IC.. i have this aching in my bladder and every now and then i have pelvic pain and I thought it might be the stones but could it be IC too?
Maybe i need my urologist to do a cytoscopy Any thoughts?

Peace out!

Rob

_________________
"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Hi Rob,

Unfortunately there s no clear cut test for IC. It is a diagnosis of exclusions meaning if they can not find any other reason for your pain they assume it's IC. A cystoscopy by itself may not show much by it's self. I was officially diagnosed after no other cause could be found and they did a cystoscopy with hydrodistention. What that was it a test where they put you under general anesthesia and fill he bladder with water to cause any injuries to show better. It is a pretty extreme route to take and from what I have learned over the years, not 100%. What convinced me it was a correct diagnosis was I looked up the IC diet and stuck with it for several months and cut out any trigger foods or drinks that could set off my symptoms. I did this and after about two or three months, saw an improvement in symptoms. At that point I would begin trying one thing I had cut out and checked to see if there was any change. This process took a long time but I learned what my trigger foods were and how each made me feel. For example, anything with tomato or tomato products were a major trigger for burning pain. Chocolate was a trigger but it caused me to have more cramping and urges. Citrus was also a major trigger food causing burning,. ALL soft drinks also had the intense burning with the cramping on top of it. Unfortunately for me I dialed in a bit too late on what foods and drinks were damaging my bladder and had a perminent stiffening of the bladder muscle and that is why they "think" it has lead to my incontinence. You see, incontinence is not a typical symptom of IC but it does happen. I was one of the lucky ones that has both. The other reason I feel like IC is my problem is I have a reduction in symptoms while on Elmiron which is the only FDA medication for IC. Bad thing about Elmiron is it may take up to six months to get the benefits from it.
So in a nut shell, my advice is this, look up the IC diet and start there. Cut out ALL the trigger foods and after about two months, if you see improvement in symptoms they adding just one of those trigger foods back in. If you see a difference, then you will know. Key is to only introduce one trigger food at a time. Good luck and go see a doctor anyway. You will need to rule out other things too like infection or cancer.

Already saw my urologist's PA for increased incontinence episodes. My bladder was going haywire a day or two ago.. when this happens, it usually means im either constipated, or kidney stones are on the move or getting bigger, or I have a UTI. Ill schedule an appointment as soon as I can find my phone. Thanks for you input.. I hope you and your family are well.. and next time, don't stay away from this board for so long.. I had missed your presence.. and in turn im sorry Ive been away. Been busy with things. In a month ill be even more absent.. God willing, I will serve my 5th tour of duty at the special needs camp.. you can find out more about the camp here: www.baycliff.org . I already sent the camp director written permission and encouragement to feel free to share the fact there is a staff member that deals with neurogenic bladder and has to use diapers and cath just in case any campers are dealing with this and are having a tough time coping mentally. I hope to be helpful in sharing my own story when they discuss campers with specialized bladder and bowel programs. Our kiddos with SB deal with this every day; imagine if they knew a staff member has to deal with the same thing!


Peace out!

Rob

_________________
"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Rob, I also have an IC diagnosis. Mine was made after seeing 13 doctors and getting no answers. The 14th provider was a nurse practitioner in "functional medicine" she made the diagnosis. I also have incontinence with my IC and I still believe I also have OAB. The two are definitely interrelated, share many symptoms, and are both diagnoses of exclusion. Hallmarks of IC is pain, frequency,urgency, etc. hallmarks of OAB are frequency, urgency, incontinence. In short. Like Rope suggested, there is no gold standard to diagnose IC and it isn't always visible on a cystoscopy, I've had two and both were unremarkable. I took elmiron for about 6 weeks, but it was $700 a month so, I didn't stick with it. I have a very small list of trigger foods: dairy products, caffeine, citrus, etc are a few I've identified. On occasion something safe will throw me into a flare, and then the next time it won't bother me. Strange things like that happen to me. Stress is a major trigger for me, when I first began having bladder issues it was during an incredibly stressful time in my life, and if I manage stress it's a little better, but with my work schedule and home life there is always an over abundance of stress. Also being overtired is a big trigger. I've also been diagnosed with generalized anxiety disorder (GAD) when my anxiety gets carried away, which happens some part of everyday, it drives my symptoms to extremes, so limiting stress is important to me. You need to work on finding things that may be triggers for you.