Some thoughts that made me go "hmmm..."

[Shalai]

Hi everyone,
I didn't really know where to post this, but I wanted to ask a couple of questions... just stuff I've thought about and wondered if everyone else might've had a similar experience. I hope I can explain what I'm trying to ask clearly without confusing anyone :)

When I had my first major flare in '02, I was in severe pain for about 3 months, then it slowly started improving (I'd had "mini-flares" before, but only lasting for about 10-15 minutes at the most). By the time I was diagnosed in '03, the pain had sorta hit a plateau, meaning it was still there, but nowhere near as bad as those first 3 months or so. At least I was able to carry on with life "normally", so to speak (go to class, out to eat, shopping, etc.) without a great deal of pain.

So....my questions are:

1. How long (days, weeks, months) did your first major flare last?
2. Did it taper off gradually to a plateau after a period of time, as mine did?
Or were you already diagnosed and on meds before your flare calmed down?

Since it was so long between the time I flared up and the diagnosis (a year and a half), I wondered, since it affects each of us differently, maybe that's just how my IC did at the beginning. But then I wondered, what if other people had a similiar experience?.

I know some of us have had IC for a very long time; others are still waiting on a diagnosis. Whatever your experience, I'd like to know, just out of curiosity. I've rolled this around in my head a lot (:hmm: it's got plenty of room! lol), and I just wondered what everybody else experienced at the beginning.

hugs,
Sherry :)

[dg2901]

Sherry,
My first major flare showed up literally overnight. Up until that fateful day in February '03 I hadnt so much as had a UTI in my 34 years of life. That pain was nothing I could describe to anyone and get my point across. It was a burning, searing, razor blade-like pain; felt like someone had taken a brand to my bladder--nothing I had ever come close to experiencing before. It totally stopped me in my tracks. The only thing I could do was run back and forth to the Dr in hopes of finding out what had invaded my body. That pain lasted from February until November without letting up for more than a few minutes at a time. I was convinced I was going to go insane if it didnt kill me first. It started to taper off in late November and returned in March '04. I remember it lasting only a few weeks then. However I was left with the constant feeling of needing to urinate 24/7. I cannot count how many times I went to the restroom in a days time. And sleeping???-forget it!! I spent many an hour with URO's trying to find what was wrong. They all speculated IC though none of them wanted to "label" me with that. I gave up on Dr's and finding a diagnosis for a year, and just recently (back in May) found a URO that I like. He was convinced based on my symptoms and my 3 years of desperation to find a diagnosis that it was IC. I was then scheduled for the PST test and within a few minutes I had a diagnosis. During the 3 year search for a diagnosis I was given meds such as Ditropan, Detrol, Oxytrol patch, Sanctura, etc w/o any help--they would all cause retention. I'm now on three 100mgs capsules of Elmiron twice per day, and 50mgs of Elavil at night. I hate to say it due to jinxing myself, however I'm starting to notice a slight difference for the better. I'm thinking its more the Elavil at this point thats helping me since Elmiron generally takes longer than a couple months to notice an improvement.

I hope this wasnt too long-winded.
More importantly I hope it helped answer your questions.

Good luck to you.
Diana

[green_the_fish]

Interesting questions...

1) My first "real" flare lasted several months. I had also experienced "mini flares" before, which had lasted from a few hours to a few days.

2.) The big flare showed up around August 2004 and kept going strong until about December. By strong, I mean my pain level was somewhere around an 8 daily. Then, it started to come down very slowly. By April, when I was finally diagnosed, about half of the pain was gone, and it has continued to drop off from there. Now I usually have very low level-pain, although I'm having twinges today, for some odd reason. It never gets as bad as it used to get, though, especially since Ortho Tri-Cyclen has stopped my periods.

[marsi4]

Hi Shalai,

I know exactly what you are describing. I have felt and had the most severe ic symptoms for almost two years. I have had this condition since childhood but my last flare was the most torturous experience any human can go through. It nearly killed me. I was fighting with every bit of strength I had to stay alive. I thought i was going to go insane as well if it didn't kill me and then no one would believe I was really suffering from this horrible condition which was very real and physical. I was terrified that I would go insane or be falsely labelled of being mentally ill and admitted to a psychiatric ward. The ignorant doctors I was seeing in the ER knew nothing about ic and were inclined to believe that the pain was in my head. I was referred to a psychiatric facility because they would not believe that I could be in so much pain and distress when during my cystoscopy exam my bladder was relatively healthy in terms of capacity and size. My symptoms were far too severe and were not compatible with the appearance of my bladder. Well, I told my uro I didn't understand it either, but that's why this condition is so hard to unravel and comprehend. It could be a systemic problem that invollves more than just the bladder but I assured him that my symptoms and pain was very real and my suffering was unbearable. Thank God I was quickly referred to a pain clinic and had my pain managed somewhat and was barely able to sustain my life. Many doctors have no clue to how severe the pain and symptoms of this condition are and often are unsympathetic and discredit us and dismiss us, which is inhuman and unethical. Something needs to be done soon for doctors to be educated about this extremely debilitating condition so we can get the care and attention we so desperately need.

Marsi4

[Judith56]

Being that I am 50 and had it all my life, I never knew any different. I never even heard the term flare until I joined this board. I just knew that some days were worse than others and I had figured out what made things worse on my own. My IC got so bad that I had my bladder out at age 30, whihc is highly unusual. I do not want to scare folks by posting this, but I did want to let you what my experiences were. Judith