6 Week IC FLare that keeps getting worse!

[lisaloo]

Okay, so 6 weeks ago I went into a flare. I think it was from the oil of oregano i was taking, so I stopped taking it, I went back to the diet religiously after it was getting worse. After 2 more weeks I got rid of taking all the supplements, vitamins, and minerals I was taking for the last 3 years.
I went back to the exercises that helped my ic go into remission years ago.

I've had two tests for a UTI done, the tests and the cultures come back negative.

The flare keeps getting worse. Is that normal? In the past I stopped what was hurting it and I was fine.

6 weeks and each week it's getting worse? What could be going on?

[ICNDonna]

If you're not on any medications for your IC, I suggest you see your urologist and see if there's something you can do to help you out of your flare.

Sending gentle hugs,
Donna

[lisaloo]

I'm on detrol LA, I have a follow-up urologist apt at the end of the month, soonest I could get it, but it's only with a physician's asst. When I made the apt I thought I would be doing better.

I just don't understand how my flare could get worse over 6 months.

[turnaround]

Are you positive it's not an infection? I am in the middle of a two week flare myself. I think I get really tense after a couple days and that makes it worse. Try to relax and stay on IC diet. and make sure no infection.

[lisaloo]

I've been to the dr twice, my testing showed high nitrites (which I know pyridium can cause a false positive.)

Both cultures came up with no bacteria.

I've gone from eating mostly whatever (no tomatos), taking a lot of suuplements for CFS, and now I'm nowhere.

I was on Biaxin, buy day 4 I was worse, retested, still high nitrites, went on new antibiotic did nothing but make it worse.

[Kieri]

I can't tell you how much I hear you ---- This is copied from my story, and it is the sum of my life recently ...

Then this year things went downhill. About 6 months ago, I decided to go see a uro. I had never been before, and I was terrified. The first one I went to was a @#$*( lol so I moved on. The next one I found (actually my fiancee found him on the internet) was an angel. He treats me to this day. He ran tests, looked at files, and said "you have moderate to severe IC." Then he suggested a number of lifestyle changes, but left me on the Elmiron. I started taking it correctly in November. Since then, I have had DMSO treatments, but they seemed to make me worse so I stopped. The AZO was my rescue, but other than that flares just took a day out of my life now and then.
Two weeks ago tomorrow at 330 pm my life changed. I don't know why and I grieve over it. My fiancee and I went out to lunch, and I ate nothing different than things I've eaten 100 times. I have always been able to eat what I pleased, nothing overly spicy due to my stomach, but other than that most things. I got home and it seemed like a normal flare. But it didnt' stop. Now, almost two weeks in, I have never felt anything like this. I have been on 4 anti-spasmodics, a new step for me, and have gone from hysterics to depression to sheer misery. It is at a point where it almost took over my life. I have no idea what started it, and I pick my brain apart trying to figure it out. What am I doing differently? The hours I have spent trying to answer that question.......
I ask myself, is this just a bad flare or is this what my life will be like now? Did I do something that cumulatively just exploded that day or did something change that I'm missing? The pain hasn't gotten much worse, it's just the horrible shooting nerve feelings in my urethra, my bladder spasms, and the constant feeling of urgency and fullness. It has made life hell. I don't know how to fix it now. I just hope I can make it to graduation, because I'll be damned if this disease is going to take one more good moment away from me.


Sound familiar?
xoxo hang in there, somehow we'll make it through this. I don't know if our IC suddenly got worse, or if this is just the flare from hell, but message me or chat on here, I'm happy to help any way I can. *hugs*

[ICNDonna]

Kieri, I suggest you give the IC diet a chance. It's possible you are becoming sensitive to some foods and drinks, which can definitely cause flares.

Warm hugs,
Donna

[LittleRed333]

Hi Lisa....

I just got over a week long flare(sure it`s not 6 weeks like you, but even one day of a flare seems like a lifetime).....I was sure I had a UTI.....I had my urine tested which showed no infection. so it was a flare......I feel I know what caused my flare.....my husband and I are not intimate much at all d/t my IC, but we were a couple days before my flare began....I wasn`t sure at first if it was just a flare or a UTI because I had just had a UTI a month before(due to being on Doxycycline)......sometimes IC is so frustrating because you just don`t know if you are in a flare or if it is an actual UTI and you never know what is going to cause a flare...it can just be so maddening......

But anyhow, I found that taking Azo really helped me to conquer my flare and drinking enough water too.....I also took Tylenol as well......

My meds I currently take for IC are: Elmiron(which has been a year this month)and Cytotec....

I have been feeling much better to the point where I started with a weight-training work-out and I was able to go for a walk last evening.....my IC acted up slightly afterwards(I did take Azol), but by this morning all symptoms are gone.....

Bless, Sharon

[lisaloo]

thanks for all your thoughts. I'm going to try to get into the urologist earlier than I have an apt for. Plus I have one with a PA, rather than a dr, because it was going to be just a routine follow up. I've always gotten back to symptomless in a couple of weeks or less.