any other weirdos out there?

[megancolleen]

It's puzzling to me that I seem to be one of the only ICers who has the triggers I have. I can guzzle coffee and most other "bad" foods without consequence, but I can't fly or have sex without disasterous consequences. It seems like the only thing my bladder hates is vibrations...the vibrations of airplanes and cars, and the repeated trauma of the bladder during sex. I know for a lot of people, car rides are difficult because of frequency, and sex is difficult because of tight muscles, but for me, all flares seem to result from movement that affects the bladder. It's as if the "missing GAG lining" theory isn't true for me, and that might explain why Elmiron was useless to me.

I really think that in the (hopefully not too distant) future, there will be different forms of IC, or they will find that the umbrella term "IC" is actually too broad and there are actually several very different disorders with symptoms of pelvic pain, with different causes and different manifestations. We're just too different; it doesn't make sense.

[ihurttoo]

Yep, there are others out there! I am a "weirdo" too! LOL! Sex bothers me during and for a few days after, but foods dont bother me terribly, except for caffine, carbonation, and spicy foods. Elmiron didnt help me either! But, I know what caused my IC. I have/had endo and pelvic adhesions. The endo grew thru the lining of my bladder and caused mine, plus, I had a C-sect 5 years ago, and the scar tissue there caused adhesions affecting my bladder. Even thought I had a total hysterectomy, and they cleaned everything up, it still violated the integrety of my bladder, causing IC.There arent many out there like you and me. But there are a few. Just wanted you to know you arent alone! Hugs, Amy:grouphug:

[Mrs. Burschman]

Count me among the weird!
1. The only thing that seems to really bother me is Coke/Pepsi. Maybe spicy foods. Not much else.
2. I don't have frequency or urgency, for the most part.
3. Elmiron didn't help.
4. RESCUE INSTILLATIONS made me worse, not better!
5. My urethral pain gets better when I sit a certain way.

So you're not alone!

Amy (Mrs. B) :bunny:

[Kara Isabel]

I know!!

Each and every one of our bladders has a personality of its own! LOL IC is so individualized......

I don't have much problem with coffee, I've gotten braver and braver and moved from Starbucks Breakfast blend to my old favorite "French Toast" flavored coffee (YUM!!!!!!) Which I'm actually sipping on now! lol It does increase frequency, but not pain......but TEA. Forget it, I'll be hunched over crying. I even have pain with EVIAN! And I cannot for the life of me figure that one out :hmm:

But THANK GOD I can tolerate some coffee! It was bad enough giving up the wine and mexican food! LOL

[kuntrygurl78]

I know how you feel. A month after diagnosis, I wondered if I had IC. The only food triggers I have are Dominoes pizza :( and juicy juice. I used the IC as a reason to cut caffein. I had been wanting to do it for health reasons before the diagnosis; IC just gave me a good excuse. I, too, am sore for a few days after sex. The initial penetration hurts, but once we get passed that, Im ok till we are done. Then I feel like sittin on the toilet the rest of the night. My other trigger is Yeast infections. Had one last week and thru the weekend, and just havent felt well.

I agree with what you said about IC may end up being an umbrella term in the future. There are those with extreme symptoms and others who have very few and have mild symptoms (like me). Until they can figure out a cure, then we are all in this together. I guess its one of the positives of this whole thing. I have found a brand new, wonderful and supportive family.:grouphug:

Hope you feel better soon!:hi:

[sarahjmiller]

only thing that bothers me is sex.

almost always AFTER, not during - - -- either several hours later or the next day. but it gets to a pain level of at least #3. sometimes lasts for days instead of hours.

never foods/drinks a bother to me.

i also think that no matter what triggers/bothers us, even tho we are all different, we are ALL THE SAME because WE ARE ALL BOTHERED BY THE AREAS THAT ARE 'DOWN THERE', don't you agree???? :confused:

[July]

Could it be that you have pelvic floor dysfunction which irritates your bladder ?

[sarahjmiller]

i would like to think that is the answer instead of i.c., but can't convince my URO of that.

post-meno 5 yrs, no sex entire time. started having sex last fall, got UTIs/yeast inf's. gyno put me on estrogen inserts and sent me to a URO. he put me on vesicare.

these are pelvic floor symptoms:

Urinary urgency and frequency
Pelvic pain
Pain associated with sexual intercourse
Sensation of incomplete urination
Lower back pain
Pain behind the vagina
Decreased urinary flow
Constipation

I have only occasionally had urinary urgency and frequency. Pain only AFTER intercourse.

:confused: WHAT IS 'PAIN BEHIND THE VAGINA'????

[July]

My PT told me that many women experience pain (muscle spasms) on the posterior (back) wall of the vagina, so maybe that is what you describe as pain behind the vagina? I know when she touches the posterior I feel the most pain. Or maybe you feel pain in the perineum which I believe is directly behind the vagina?