Happy New Year
readers!!
I always find myself hopeful on
January 1st, so much potential and endless possibilities for the year! I'm
excited to see what 2013 has in store for me, my family and the IC community!
In spite of the fact that 2012 was an
amazing year it kind of ended with a hard weekend. Over just 3 days I spent
around 25 hours in the shower. The pain was extraordinary as I tried
relentlessly to empty my stubborn and full bladder. So yesterday, on the
morning of New Years Eve, I found myself at my trusty Urologists office
desperate for answers. Well… did I get some answers!
As I told my urologist, Dr. Jacoby
of Urology Northwest, about my shower marathon weekend she prescribed me
Demerol for when the pain is extremely unbearable, put me back on amitriptyline
just to be sure it doesn't help and decided to do a quick bladder scan to
determine how much urine I was retaining. I was excited to have proof and
validation of the horrifying retention I had been struggling with.
I attempted to empty my bladder before
the scan but unsurprising the usual drips were my only reward. As the nurse
pressed the bingo-dobber-looking-thing on my bladder and it clicked like a
friendly dolphin the pressure induced pain convinced me of the presence of
excessive urine in my bladder.
As I wiped the gel off my tummy the
nurse casually said, “yep… it's empty!”
My world stopped. What?? My thoughts
ran 100 miles a minute, some of these high speed thoughts came out "It's
empty?? But I barely went and what about the full throbbing sensation in my
bladder?? Are you sure??" The nurse replied confidently "0.0 ml in
your bladder” and furthered the proof by showing me the results on the old
school computerized screen. I was shocked... I don't even remember what I
said but the nurse called me adorable... I wasn't trying to be, but who
doesn't want to be titled adorable in any situation.
The nurse told us we were good to go
but the doctor stopped us on our way out. I just looked at her (probably a
little creepily) and said, “It’s empty… I’m shocked.” She put her arm around my
shoulders and said simply, "I'm not. Now stop trying so hard to pee,
there's nothing in there."
I numbly walked out of the office
mumbling different versions of “I can't believe it.” This new discovery made me question my whole
life and everything I thought to be truth. I was 100% sure there was urine in
my bladder. 100%. I was also that sure I loved steak and potatoes, was I wrong
about that? Am I really a green leafy vegetable kind of girl? What about my dedication
to saving worms? Have I wasted my life moving those defenseless slimy creatures
out of harms ways and into a nice dirt filled planter?? What about my raging
fear of birds? Are they really gentle creatures undeserving of my terror? I don’t
know anything for certain anymore!
So now how do I know when I do have to
pee? Do I just go every time and then assume that after I go, even if its mere
drips, that I released all the contents of my bladder? So does that mean I
actually DO have frequency? I thought it just took me forever to pee the one
batch but maybe it’s that I do empty and then I have to release the new pee as
soon as it enters? I’m so confused!
Don’t you know this is why I spend
hours in the shower? Because the heat eases the pain and I THOUGHT it allowed
me to finish emptying my bladder. A heating pad helps but I've always been
scared I would have an accident because I thought my bladder was still
full.
My mind is blown! Have I wasted 12
years trying to pass pee that isn't even there!?
On Saturday I almost cath-ed myself
but the fear of the post catheter urethra pain was more fierce than the current
pain. By George aren't we glad I didn't! There was nothing even in there!! Mind
blown.
I guess I can look at this as a
positive thing! I don’t HAVE to be in the shower. It does help the pain but
other than that it’s not helping me pee because I don’t have to go! Also, just
the fact that I don’t have retention is stupendous! I am just so confused! I
feel like I am starting over with my IC. How do I treat this now that I know it’s
just pain and maybe frequency but not retention? I guess there was no better
time than New Years Eve to find this out! I am starting 2013 with a plan to
change up the way I deal with my daily IC. No more narcotics (thanks to the
allergic reactions, see last blog) and no more showering for hours (because apparently
it doesn’t help me pee).
So I raise my room temperature, sip of
water in a blue plastic cup and say here’s to new beginnings! Here’s to having
your mind blown! Here’s to making the best out of things! Here’s to being optimistic!
Here’s to life! Here’s to the New Year! Cheers!
So I normally don't post on things like this, but I stumbled across your blog (from the IC Network Facebook page) and I had to comment on this. I struggled (and still occasionally struggle) with this same exact thing. I went through a several month period before being treated for my IC where I literally felt like my bladder was so full it was going to explode *all the time*. My urologist at the time told me that I have an "abnormally small bladder" (which is false by the way) and that was why. When I finally switched doctors and got properly diagnosed and treated for the IC, the full sensation in my bladder, which was caused by the exposed nerves, mostly went away. I occasionally still feel it when other pelvic areas are sore. One thing I've found that helps (which is the real reason I'm commenting) is to drink extra water. I know that sounds opposite of what you would think helps but keeping my urine diluted made all the difference in the world for me. Even to this day, I know when I'm getting dehydrated because my bladder starts to feel "full" even though I haven't had anything to drink. Then when I drink some water the pressure goes away. Very strange. As far as knowing when I have to pee "for real" I've gotten to the point where I can sort of tell the difference most of the time. It's hard to explain and everyone's body is different but for me having an actual full bladder tends to feel less painful than a completely empty one. So if I have to pee and I'm not in any pain I know I need a legitimate bathroom trip. I don't know if this helps or not, but in any case I wish you all the best. Also, your attitude is really contagious. Thank you for making me smile today :)
ReplyDeleteOh, and I'm right there with you about peeing in the shower. So much easier. Although I would never admit this to my husband because it would gross him out.
Really??? That is so interesting!! Honestly, now that I think about it I think that is true for me too! Like when we go to a restaurant I always drink a lot more water than usual because the glass is always full of cold and delicious! (Isn't weird how stuff at restaurants is always so much more delish than at home?) Anyway, I can't believe I never put that together... I mean I knew the pain was slightly less when I drink more but the whole full sensation might be less too. I'm going to be experimenting with drinking different amounts!
DeleteI'm still trying to figure out when I actually have to pee and when it's just the sensation but I'm sure I'll figure it out eventually!
Thank you so much for reading and commenting! It really gave me a new perspective that I hadn't put together!
I would love to hear more please xo
ReplyDelete