Glad You Are Here!

[JanaMarie]

Hello,

I am a newby here and just wanted to introduce myself. I have a feeling I'll be here for a while.
I just found this website a couple of weeks ago while searching for answers in sheer desperation. As I was reading the posts I was amazed because those were MY symptoms! But what the heck is IC?
I called my uro the next day and told him what I suspected I might have. For all the times i have been tested for a UTI and been negative, all the proceedures I've gone through for this pain (even a colonoscopy!) neither of my Dr.'s have ever mentioned IC to me.
So I had my cystoscopy on Monday and of course I was not in a flare so he told me my bladder looked normal. I'm no Dr, but I saw all kinds of red areas with visible veins, is that normal? And since my bladder is normal, there is really nothing he can do for me unless I want to have the hydro thingy and take an anti depressant. He then gave me a little pamplet on IC and sent me on my way. I doubt I'll go to him again.
Anyhoo, it's kind of a depressing thing to have, but I can't tell you how grateful I am to have found you!! I am trying to follow the diet (what, no coffee!) and I've ordered my Cystoprotek and feeling a LOT better. I find myself reading posts all the time now.
Thanks for listening, I'll see ya around!

Jana

[Linda May]

Ic

Welcome to this forum there is a lot of info here and people who understand. Did you see another uro? anyway stick with the IC and I wish you the best.

[Linda May]

Ic

Is there anyone from Huntsville Al? I would love to get to know you and share your thoughts on how things work for you with IC.

[Julie B]

to the ICN!!!! You are right...there is a sense of relief knowing that others are experiencing the same thing you are.......of course we wish we didn't have to have it at all, but it is a relief to know that you are not alone.

This is a great place to learn what you need to learn about this disease.

HUGS

[ICNDonna]

I'd just like to add another to the IC Network. And, by the way, it's not unusual for an IC bladder to look normal and healthy during an office cystoscopy. Mine did. The IC became apparent when my bladder was stretched during the hydrodistention with anesthesia.

Warm hugs,
Donna

[VickiB]

Adding another to the ICN, Jana!

I'm another who's bladder looked perfect during their cysto. (There were ugly red lines but my doc seemed to think that was normal. Just blood vessels maybe? -I didn't ask.) Anyway, my Uro said that this procedure wouldn't necessarily help to 'show' whether I had IC but was useful to rule out other possible causes for my symptoms.

The Uro you saw saying "there is really nothing he can do for me unless I want to have the hydro thingy and take an anti depressant" gives me the impression he is somewhat limited in his ways. Not everyone does the hydro thing and they're still diagnosed and treated. I've read there is a movement away from the hydro for diagnosis now.

There are great doctors out there, many in the middle, and some that ought not be allowed to practice. I think it's important to find a good doctor who isn't afraid of a challenge, can be flexible with treatment options, and that you feel you can talk to & work with. Many of us have had to shop around before finding our Dr Right. Hang in there and keep looking for yours!

Vicki

[KatieB]

Hi JanaMarie!!

I talked to you on the Ore. post!! I think maybe you're seeing what I meant about having a hard time finding a uro to treat IC. My gyno was actually the one who suggested it, but of course, he doesn't treat it. My new (hopefully good) uro told me that he doesn't really do hydro's anymore but does cystos to check and make sure nothing else is going on. From what I've gleaned here and elsewhere online IC is a disease of exclusion. My second uro told me that if I can't take the elmiron and the elavil (which I can't) then my only option was to go home and suffer. There should be quotes around that because that exactly what he said. That's NOT true!! And I'm going to do and try anything and everything to get some kind of control over this!! Please don't be discouraged by one uninformed urologist. Get a second opinion and if need be, a third. My hope comes from people here who have found a way to live with this craziness and have an actual life again!!
Again,

[KatieB]

Also, about the coffee!!

I don't know if it's because it's been SO long since I've had it that I've forgotten what coffee tastes like, or if I've really found something great. BUT, I bought some tea from the ICN shop called Roastaroma!!! It's herbal, caffiene free and so far (I've had 3 cups since yesterday) hasn't caused anymore problems than I usually have!! And the kicker is I THINK it tastes like coffee!!! I don't know if anyone else has tried it, but I truly miss my coffee at times, and I think it's great!!! I would totally recommend it!!!

[JanaMarie]

Thanks all for the warm welcome! I had no idea I was in such good company!
I will not let that Uro discourage me from from finding my relief. But when I left his office I was pretty devastated. I'm sure most of you know that feeling!
The part that really makes me angrier than anything is when I asked for a few pain relievers to keep on hand for when I'm having a really tough time, and he flat out said no, they don't really help for IC. A couple of days after that, my husband goes to the dentist for a toothache, and he's asked how many Vicodin would he like!! I was so mad all I could do was cry. Now it feels like my pain and suffering is being dismissed because what, I'm a woman and all I do is complain anyway?
But I'll get over it and keep trucking on...I'll look for a new Dr. when the bank account recovers from all these visits, proceedures and pills.
In the meantime, I have this forum and the information I am finding priceless!! Especially that little tidbit about the baking soda, a big hug to whoever posted that one!
Katie, thanks for the advice about the tea, there are a few items in the IC store that I can't wait to try!
Thanks again,

Jana

[KatieB]

Jana, I'm SO sorry you had to go thru that too. When I had my horrific appt my 21 yr old son had driven me. And when the doctor told me go home and suffer, I picked up my purse, went and paid the receptionist (which really ticked me off) and walked into the waiting room. I was crying the whole time and I just couldn't stop. Bless his heart, he didn't know what to do. I felt sorry for myself but I felt more sorry for him. But the more I tried to stop crying, the harder I cried.
I don't know if you're close at all to a medical school but that's where I've found my new uro. They see a lot of IC patients and I'm hoping they are "up" on any new treatments. Like I said, I've only seen him once and he's my third uro plus a gyno, pcp, gastro and pain management thrown in for good measure, so I'm reserving judgement. But I'm cautiously optimistic.
You're right, after I finally quit crying, I got angry. Just keep trying. There's a doctor out there that can and will help you.
Until then, can your pcp give you any pain management or refer you to a pain management doctor? That's what has kept me sane. Good luck to you and I'm so glad you found us here. You are definitely not alone!!!

[VickiB]

I will not let that Uro discourage me from from finding my relief. But when I left his office I was pretty devastated. I'm sure most of you know that feeling!

Yep! I tried several times with multiple doctors and would either come home and cry or come home madder than #!%&^. This was many years ago and I like to think things are getting better where diagnosis and treatment of IC is concerned. Still, from the reading of other's experiences I know there is unfortunately progress yet to be made.

"The part that really makes me angrier...." I read that and filled in -that I paid to be treated that way! But, yeah, it's kind of amazing how the pain of IC is dismissed! Mind boggling!

[JanaMarie]

"The part that really makes me angrier...." I read that and filled in -that I paid to be treated that way!

Oh yea, that too!!

Jana

[JanaMarie]

. I was crying the whole time and I just couldn't stop. Bless his heart, he didn't know what to do. I felt sorry for myself but I felt more sorry for him. But the more I tried to stop crying, the harder I cried.
!!

Poor kid! This truely does affect the whole family in one way or another. But we also deserve our pity parties once in a while.

Jana

[KatieB]

Oh trust me!!! I try to keep the worst of this from my kids (19 yr old DD and 21 yr old DS) but on my own: BAR THE DOOR!! I throw some pretty elaborate pity parties!! I'm not sure it helps because I eventually have to pull my head out, but sometimes it does make me feel better for a few minutes, anyway!!! It really helps me to come here and see that there are always people who understand exactly how I feel!! Then I can get back on my horse, so to speak, and get on with it!

[Julie B]

Jana, my first uro blamed my symptoms on everything he could think of and even said he didn't believe in interstitial cystitis. It was the nurses in the office who sent me in the right direction. I bless them every day........I finally got with a great doctor here in Michigan.

The good thing is that now we have so many good treatments. No cures....but treatments that can help alleviate your symptoms at least most of the time. We have come a LONG long way in the last 12 years~

Sending you more hugs.............. Julie