So confused! The pain is changing.

[mom_in_ma]

Last week I had a great week. My symptoms were very low level and I started to think I was finally coming out of this blasted flare.

But, the past few days I've been feeling much worse (it's not a uti) and the pain is changing. My usual pain is mostly burning...uncomfortable but still able to go about daily activities. But lately it's been more intense. It's not burning...it's cramping, jabbing, sharp poking, etc.

For the first time in four years I'm thinking I need to talk to my uro about pain meds. This flare has been hard enough to deal with, but now it's feeling so much more unpredictable and really scary!

[RAS6]

Robin,
So sorry to hear you are feeling so bad. I hated having to ask for pain meds, and I had a hard time with my first Doctor. But there are Docs out there who realize just how painful IC can be and that we need to function and can only do so if our pain is controlled. I wish I had ideas as to why your pain has gotten so bad, but I am fairly new at this. I have had a pretty bad flare ever since Easter and getting back from vacation. My pain got to the point where my Doc had up my meds! IC can be so tricky come times!
I hope you are able to find some relief soon.

[Roxie2007]

HI! Maybe what started out not being a uti is a uti now? Maybe you should have your urine cultured again, just to make sure. Have you tried Azo Standard for OTC pain relief?
I hope you are able to get your pain under control and things get better for you soon! Roxie

[leelee88]

The sharp pains you are describing sounds like bladder spasms.. The kind of mimic labor contractions, well for me anyways.. You can ask your doctor for antispasms meds first and just see if that helps.. I know they help me..Good luck and I hope you start feeling better soon:angel:

[L. Thomas]

The pain I have I describe as a backward UTI pain with sort of a "sucking-in" something like when you break the seal on a jar. It comes when my bladder is almost finished emptying. I can feel it start and I always think..oh I wish I could keep peeing. I just do an instill and that takes care of it for me.

[waterflow]

My pain changes all the time too. I get the sharp pains, jabbing pains, squeezing pains, pounding pains. I think since it changes all the time it makes it harder to treat or deal with.

[ICNDonna]

I agree with Ronda --- it does sound like your bladder muscles are in spasm. There are several different antispasmodics that could help with that. The one I usually use is hyoscyamine, but there are several others as well.

Donna

[Briza]

But, the past few days I've been feeling much worse (it's not a uti) and the pain is changing. My usual pain is mostly burning...uncomfortable but still able to go about daily activities. But lately it's been more intense. It's not burning...it's cramping, jabbing, sharp poking, etc.
!

During my first 6 months or so (before Dx) I experienced mostly burning then had a complete remission for a month or so, and then it all came back with a bang...with the symptoms you're describing now as well as a little blood in the urine, but it wasn't a UTI. I feel your pain. I remember doubling over in pain while trying to work. That went on for another 6 months or so, but in the meantime I had a cysto/hydro and hunner's ulcers were found and removed. Although I didn't get the hoped for relief from the hydro, it wasn't until recently that I started having those stabbing pains again...makes me wonder if the hunner's ulcers are coming back, in my case anyway? This is just my assumption, knowing that I did have hunner's ulcers.
Your pain does sound very much like spasms, but wouldn't hurt to get checked for a uti, anyway, unless you have already. Hope you get some relief soon! Best wishes:)

[mom_in_ma]

Thanks everyone. I ended up calling my uro today and talking to the nurse. I
ran into the office and had a urine culture, which I'm sure will be negative, but it's always best to rule out a uti.

I agree that my bladder is spasming...and it's starting to affect my pelvic floor muscles. I have that horrible pressure in my vaginal and anal area from really tight muscles and the xanax is only slightly controlling it. It's a bummer because I haven't had that feeling since I was first diagnosed four years ago!

I'm really not sure what caused this change. Although, my allergies have been flaring like crazy even on my allergy meds and I'm sure that's not helping things.

Anyway, I'm still not ready to try instills, but I was given a perscription for elavil that I'm starting tonight. Wish me luck! I just need something to help with the pain and relax my muscles. My heating pad and I have become best friends!

[TexasHoney]

:grouphug: Robin, I hope you are feeling better by now.

[Sharyn]

I have just started back on meds and instills for the bladder. I was doing very well for about 8 months and it returned. Today, I am feeling much better. I had an instill yesterday of heprin, only, but next week the nurse wants to try DSMO, Steriod and Licocaine. I know you are concerned but it may take a instill of some kind to let the bladder heal. I also take Neurntin, Hydroxyzine and Pyridium Plus when I have urgency. Prelief has been very helpful. I did well on Elmiron for about a year and then it stopped working. You may want to give that a try. I had pain most of last week. The doc told me not to chase the pain, meaning you keep some meds in system all the time.:angel: