flares?

[Sandra11]

I have a quick question..when you guys all talk about getting IC flares...what exactly is going on..just so i get an idea of diff ppl?

also what is the quickest amt of time it has taking for elmiron to work on someone?? is it helpin you to get less infections? what exactly does it do for each of you?

thanks for all ur feedback guys!
Sandra

[Dee74]

Since I am new to this as well, I haven't the slightest clue. I imagine it has something to do with the bladder getting even more irritated somehow.

I do know that around the time of my period, things get ALOT worse (god help me this time, I'm already in enough pain).. and from what I've read, that's true for alot of us. Maybe because of the bloating and extra pressure on our bladder? hormones? I have no clue! :dizzy:

[Sandra11]

yeah around my period it is extra bad too....and you know what my belly has been really big lately and i realized its b/c im bloated...im like i cant be pregnant b/c im not getting any....lol not funny.....im always bloated and always consti[pated...its so annyoiing

[Dee74]

Right now I'm extremely bloated myself. I LOOK like I'm 4-5 months pregnant. None of my jeans fit me at all :( I FEEL constipated but I know that I'm not since I'm still going as I normally do.

I don't know what the heck is wrong with me lately. I just know that something isn't "right" somehow. I also have suspected endometriosis, and I go back in to the gyno on the 29th. Grrr sick of doctors, sick of tests.. and just plain SICK lately.

lol I had to laugh at your comment about not getting any. I've said the same thing to my doctors. "Um yeh, don't you have to get some to get pregnant? Yeh, thats what I thought.. I haven't gotten any in a long time".

[VickiB]

Hi Sandra,

That's a bit of a trick question regarding flares in that while we may have the same problem (IC), it often manifests itself in different sypmtoms and also to different degrees of severity.

Normally, I have the feeling of needing to urinate often, once every 2 to 3 hours on a real good day. That frequency comes with a level of urgency that doesn't make any sense because my bladder has so little urine in it. Plus there's just a raw feeling inside my bladder as if it's bruised or full of open sores. That's my day in day out, and is my 'normal'.

What I call a flare, is when the above norm is suddenly mulitplied by 20, and a few new pains join in for the fun. (burning, stabbing, etc) The frequency shortens to 5 minute spans. I cringe just to think of it! Most of my flares are self-induced by straying off the diet, and relatively short lived. The flares which come for no apparant reason that I can pin-down, are by far the worst and may last weeks.

vicki

[Katrina]

I consider a flare to be anytime you are feeling worse than normal.

Elmiron helped me in 4 months...which is the normal low! I have heard some believe they were helped within a few weeks...which is very odd. It isn't meant to reduce actually infections....if you are getting multiple true infections you may want some antibiotic treatment aswell. I am on antibiotics and during my 4 years on them this time I have only had one infection. I hope that helps you.

:grouphug:

[Dee74]

I have had constant pain/irritation for the last few months.. urgency, frequency, burning, and bladder spasms. I haven't started any meds yet though and was just diagnosed recently.

I've figured out what a flare is for me though. When I flare, my symptoms are much more pronounced and I can't just go on with daily life.. can't really ignore the symptoms. The urgency gets really bad, and I'll pee about 30 or times a day (I've kept track). These are the times that I've always thought I had a UTI because the pain had gotten so much worse within a matter of days. But my urine always tested negative for bacteria.. only showed blood.

What scares me is that I honestly can't tell now if I DO have a UTI. I've been in alot more pain than normal since I had my cysto/hydro on the 7th. I thought it just made me go into a really really bad flare. Only after talking to the ladies on this board (gosh I adore you all!), did I even think I had a UTI. So I went in to the uro yesterday afternoon.. sure enough I have alot of nitrates in my urine and quite alot of blood. They're culturing it now and will let me know today if I do have a true UTI, but she even told me yesterday that she's pretty sure of it, but didn't want me to start antibiotics until they KNOW for sure. I'm honestly HOPING I have an infection this time!! Then there will be hope that it won't stay this painful!!

But the fact remains.. I have no clue when I have a UTI. I don't get a fever, or chills, or anything like that. :hmm:

[Sandra11]

Thanks for all your comments guys..its just so annoying b/c it seems like I have UTI's so often lthat I get all excited when i feel ok.....i just hope it goes away this time and I figure out whats really going on with my body...still waiting on lab results from gyno....well see

[mom_in_ma]

Dee,
If you have nitrates, you have an infection. They are the waste that is left from bacteria. Hope you're feeling better soon!

[Dee74]

Robin, that's what I thought.. but the nurse, who came back and told me that I had the nitrates and blood, said that nitrates can be there from taking antibiotics :hmm: .. that she read in my chart that I was on antibiotics. I told her I hadn't had any antibiotics in 10 days (guess she didn't read when and how long I was on them).. so THEN she said, well you probably have an infection.

I only saw the nurse yesterday (didn't really like her either), just came in for the urine test. They still haven't called me back, but the prescription pyridium seems to be helping a little more than the Uristat. I also bought some Prelief yesterday and have been taking that with meals - so it may be helping too.

[Myli]

I hate to put it this way, but I think of flares as hell on earth. Flares can hurt for mere days or weeks. Some are relatively low level pain, on my 1 - 10 scale, maybe a 3 or 4 with some peaks above a 5. But some I would rank as 10+ pain. Mine are usually general pain in the pelvic region, stabbing pain in the bladder, burning in both bladder and urethra and pain even in the external genitals. Urgency and frequency are a part of all of it also. The short term ones I can usually grit my teeth through and whimper. The longer ones begin to make me wonder why I am alive, which is why I think of them as hell on earth. I almost hesitate to say this aloud, but they do seem to be becoming somewhat less frequent.

The good thing is I am having more good days than bad and have learned to respond to the start of a flare very quickly. No more waiting to see if it will just go away. That was just wishful thinking and denial.

:grouphug:
Myli

[Dee74]

Hey, guess what? No UTI :(

Read my other thread for explanation :(

I'm not a happy camper today.

[sweettabby]

My worst symptoms in a really bad flare are burning and aching in the urethra as well as some frequency. I dont have bladder spasms anymore thank goodness and no sharp pains of any kind. My really bad flares can last from days to weeks. When I really start to flare I go and get my DMSO treatments. Sometimes it might take two or three before the flare stops. Thank goodness I dont flare very often but I still try to get DMSO at least once a month and take Urised on a daily basis to try to keep things under control.