The tricky thing about interstitial cystitis is that every
one experiences different symptoms in different ways and severities. It is hard
to diagnose and hard to treat because each case is so different. So I wanted to
tell you a little bit about MY IC. It is an individual just like I am and is
quirky and frustrating just like my husband claims I am.
First… some positive tidbits! There are a few symptoms of IC
that I don’t have to endure and I am so lucky because I cannot even imagine the
lives of people with every IC symptom, there are extra gems in their heavenly
crowns for sure!
Some people struggle with frequency, where they feel the
urge to pee as often as every 10 miuntes! YIKES! Thank the Lord in Heaven above
that I got to skip that one, because I would have lost it and rigged a
catheter/ extension cord apparatus years ago. (You know I could not handle the
bag strapped onto my leg… what if I tripped? Just sayin…ew)
Another one I got to miss out on is what they like to call
nocturia, which is a fancy word for waking up to go potty during the night. Then
you’d definitely see me on the commercials during The Price Is Right selling my
new alternative to the catheter bag right after the B.B. King Diabetes
commercial. No thank you.
Last but definitely not least, I have never had any signs of Hunner's ulcers on my bladder. Which are ulcers that attach to the bladder wall and just wreck all sorts of havoc!
Last but definitely not least, I have never had any signs of Hunner's ulcers on my bladder. Which are ulcers that attach to the bladder wall and just wreck all sorts of havoc!
Unfortunately that’s where that list end and the negativity
begins. Pretty much every other symptom of IC graces my bladder with its
presence every day!
One of IC’s quirky traits is its irony… Retention is when no
matter how full my bladder gets I cannot release the urine. For me this is
primarily due to my muscles knowing the familiar pain that’s coming and they
decide they would rather work over time and make some extra spending money so
they all tighten up and no matter what their boss, my brain, tells them they
won’t relax and allow the urine to pass through.
Here’s where you really get a kick from that irony… another
symptom I have is incontinence. Those very same stubborn muscles work so hard
that they finally decide they’ve had enough and need a lunch break… so what
happens? The flood gates open and my bladder empties no matter what I’m doing… making
dinner, sitting on my husbands lap, nursing my son, or even roasting a nice
marshmallow and BAM! Flood. It’s like they have no regard for my social life…
little jerks.
Urgency is another fun trait my IC was supplied with, I
guess it explains itself. You’ve heard the sayin, “when ya gotta go, ya gotta
go!” Ain’t that the truth!
I really have no medical ditty about this one… I just know that some times the urine makes my bladder so angry that little bits of bladder design to jump ship and I end up having to pass those out along with the acid pee! You could imagine how
much of a joyful experience that is.
Last but far from least is my worst and most reliable
symptom. Pain… that’s what the Doctors
describe it as but us IC’ers know it is so much more. All the previously
mentioned symptoms cause pain but this is it’s own little category because I
have several different types of pain.
- The pain I have when my bladder is full feels like it’s full of wet cement churning around waiting to be poured.
- (Irony again!) I also have pain when my bladder is empty. As rare as it may be, when it is empty it feels like a giant grocery shopper is squeezing my bladder to check for ripeness like a fresh plucked mango!
- One of my worst and most troublesome pain sources is when I have to go potty and I am finally able to get some out and the pure, flesh eating BURN I feel when the urine slinks reluctantly through my urethra is so searing that those pesky muscles toss their turkey sandwiches, pop on their hard hats, jump back into business and clinch right back up. So there I sit with a still full bladder minus a tablespoon of the sneaky pee. The pain is torturous as my bladder is full, my urethra is scorched, and there is no end in sight.
- Which leads to the pain of trying to push it out, the mere drips I receive as a prize are not worth the sweat and agony I put into it.
- Also due to those union muscle workers some times a few drops will be making their journey to the new world and those buffoons stop them and the droplets gets caught in “limbo”. That’s right… not heaven or hell, not bladder or toilet, limbo. Flaming urine in blistered tunnel… not pleasant.
I want to stress that my pain is not constantly severe,
though always there. It’s always
changing but my life is good and I am blessed in so many ways. There… I didn’t
want to end it on that cranky note.
So… in summary… IC sucks. Mine could be worse… but could be
better! And… constructions workers are the root of all evil, at least in this
theory and in the case of most traffic.
You inspire me! (I'm still sorry for kicking your fax machine) :)
ReplyDeleteAin't no thang! Thanks for your support buddy!
DeleteThanks for sharing this...I have IC but don't have any of your symptoms. What I have is pelvic pain symptom...I was positive for the IC when they did the surgery..but other then my groin area hurting...non of the other issues...not sure why mine is nothing like anyone elses. I feel in some respects I dont' have IC but rather just pelvic pain....I am lost...
ReplyDeleteOh I am so sorry you're feeling so lost and alone in this crazy IC world! Like I said, every case of IC is different and I totally know what you mean about groin pain, thats hard because it's so hard to describe and hard for others to relate with! What I have learned is to listen to your gut, instincts, and your doctor (if you have a great urologist that you trust)! Don't listen to any one else! Please let me know if I can help in any way!
DeleteHave you tried physical therapy? PFD can cause a lot of those symptoms. I had frequency until I changed my diet now that is better but I'm still dealing with the pain and pressure. I've also developed vestabulitis...so now I have a whole new fun thing to deal with. Thanks for the blog, it's comforting to read about other people's experience with IC.
ReplyDeleteOh yes pfd and I are old friends! I have done pt on and off for years but I always felt like it was such temporary relief it wasn't worth it and some time I flared after too. I'll have to look up vesabuitis, I haven't heard of it! I'm so glad my blog is comforting that was really what I wanting! Please continue to read!
DeleteI am new to IC. I have constant burning bladder pain. I don't have other pain. I do have to void frequently at night but during the day I don't. Does anyone have extra burning in the bladder when you need to have a bowel movement? Someway, the colon is related to this? Or am I wrong? Is chronic constipation a problem for any of you? Any advice or help you could give me would be appreciated.
ReplyDeleteYes those are all very IC-ish symptoms!! Having a "bm" is like a death sentence for me... it hurts when I need to go, am actually going and after... I think its just extra strain and pressure on the bladder. Constipation is a common problem too due to ic medications and general havoc in the pelvic region. IC often has partners in crime like IBS, endometriosis, and other chronic issues so you should ask your doctor!! I'm so sorry you're struggling with ic... I hope you can get on some treatments that help asap! Let me know if you have any other questions or just want to vent!
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