A few questions

[Mikki H]

I read several posts earlier and am now convinced that IC is what I'm dealing with. I've been dealing with symptoms for a year or so now. It started with multiple UTI, one after another and then the cultures started coming back "clean". I've been working with a urologist, who thinks IC.

I had a terrible flare up this morning and was looking for others that have my same problems. My symtoms have mirrored many of yours - with especially the hurting urethra. What I have that I don't hear many of you speak of is I sometimes can't tell when I do have to go pee. I feel I've lost the sensation or whatever and also when I do feel I've got to go, sometimes it's hard to get started. I have to really relax, breathe right and no one can be near the room! Sound familiar? Today, tho, I've felt the urgency to go all day and I've gone 14 times - is that a lot? I've only drank 32 oz of h2o - it's hard for me to get down much more...

I take something almost every nite to help me sleep so I don't know if I would have bad nites too or not. By the sounds of things, I think I'll continue that. I'm on oxybutinin, muscle relaxers, nitrofurintoin and recently the pyridiem which I think has helped quite a bit so far. I'm also on Fluoxetine (generic prozac) for PMS (which works VERY well BTW). Sorry for the long post, but it's good to be able to talk about it and hear from real women about such things. Mikki

[amethyst79]

Welcome to the list Mikki. Sounds, to me, like IC is it, too.
I have some different symptoms, mainly cramping (sometimes PAIN), urgency, frequency, burning, and microscopic hematuria, but reading your post reminds me of a lot of others I've read... so :welcome: to the group.

I believe it was Jen who told me over 7 times a day as "abnormal" which still surprises me. I'm in awe of the 14, I wish I could do that... I'm currently between 43 (my lowest number in months) and 65 times per day :yikes: and this is with me taking Detrol for a while, then Detrol LA, and now Ditropan.

Rediculous isn't it??

I would suggest, however, that you don't limit fluid consumption, I don't think it matters all that much unfortunately. I had the flu a while back and would drink not even 8 ounces in a day, and urinate at the same frequency.

Hang in there!

Chelle

[Sarojini]

Yes, Chelle is right... "normal" number of voids per day is 7 or less. I read this in a few books on IC, and also my urologist mentioned it in passing one day when I was whining to him that I had to go pee 23 times. Chelle is also right that it is not good to limit your water intake -- it's best to keep hydrated.

I used to go about 30-40 times a day with IC! Now, after treatment, I go about 20-25, and I am hoping that will improve further soon, when (a) I get rid of the UTI I got on top of IC---ouch!! and (b) I go for a few more treatments and/or give the oral meds more time to work.

Anyway, it sounds like you may have IC -- but you need to see a urologist of your own to find out. There are other things that can mimic this condition and they need to be ruled out.

Good luck, and keep posting... this is a great place for support :)

Sending hugs

[SharonA]

Hello Mikki and :welcome: Glad you found us.

Okay...I'm going to jump on the bandwagon and advise you not to limit your fluids. I did that in the beginning and learned the hard way. The weaker your urine...the less your bladder will burn. Makes sense...right? ;)

I, also, have a "shy" bladder and find it hard to go when someone else is around. It just sorta gets stuck and won't come out. :yikes:

[Mikki H]

Thank you for your responses! I am seeing a urologist although he is 45 min. away, but a specialist so I drive it. The only thing he hasn't done on me is the cystoscopy while I'm under anesthesia which I read is the way they diagnos you for IC. I plan on asking him about that. My doc said something to the effect of I need to think about whether or not I want to accept this diagnosis of IC bc of possible insurance problems later??? He said it could cause problems. It seems everything I read anywhere and even here doesn't sound too promising about living with this.

BTW I'm 41 - I'm shocked as to how young some of you are with this problem.

I have another appt. June 1. In the meantime, I am keeping a diary of bad days and everything to do with IC really. The pryidium (how DO you spell that anyway) seems to have put an end to my flare up for today at least. And I'm not limiting my water intake, it's just that it's "work" for me to drink that much water - but since this has come about, I'm better at it. Tonite I think I will look over the patient handbook and try to see if doing some of those things with the diet, etc. helps me. I'm on the ditropan too, not sure if it works or not. I know it dries up my sinuses :)

I'm so thankful for my suportive husband and now for you guys. It's great to compare notes. Thanks again. Mikki

[Mikki H]

Thanks Sharon, nice to know I don't have the only shy bladder - but you don't think this is part of the IC, do you? I'm not limiting my fluids, trying trying to get as much in as I can. I'm just not naturally a water drinker so it's hard. I am not currently drinking anything else so.... like no soda, tea milk or anything, just bottled, flavored water like Propel and Fruit H2o....

[SharonA]

A shy bladder can be a retentive bladder which can be a symptom of IC. Then, again, I have always had trouble letting go in public, even before IC. :D

I know...I don't like to drink just plain water, either but I force myself to do it. I am able to drink decaf iced tea, which helps. :)

[Dixiefireball]

welcome to the icn i'm sorry you are haveing the systom of ic:( just remember there is treatments out there for ic. is your doctor going to do the test to see if you do have ic some other illness does mimi ic. but either way we are here for you and we do care. i love this family here they have helped me threw so much.
you might want to look at the home page and check out the ic diet and make your own diary of what makes you flare and what dont so you will know what you can eat. that is a good way to get started remember on the diet its what people has reported that makes there bladder flare you may be able to eat some of the things i'm one of the lucky one only a few foods and drinks bother my bladder.
sending you hugs and many many prayers i hope that nasty flare leaves you alone soon.
Rhonda

[Annie2]

Hi, Mikki, and welcome. Just wanted to let you know I share your symptom of a change in the sensation when I need to void. Since I developed IC, I seldom get that old familiar sensation. Now I feel more of a feeling of pressure, building discomfort and sometimes mild burning. And, of course, after voiding I never have that wonderful feeling of complete relief.

This is a great question and I don't recall anyone directly discussing this before. Anyone else have a marked change in the "gotta go" sensation?

Also want to comment on your insurance question. IC is so misunderstood and it can cause problems if applying for insurance. Feel free to PM me if you'd like to discuss this aspect.

Surely hope you don't have IC. If you do, however, you'll find this is the greatest place for information and support!

Annie

[Mikki H]

Thank you all.

I've only just looked in here today and already I'm "addicted" to the support. I have a few more questions.... Is pyridium used to help with flare ups for IC often? Do you guys find it helpful. Can you use it a lot? I feel sure it's what helped me today bc I can sort of feel symptoms coming back now that's wearing off. How long does a "flare up" last for most, a few hours, days or what?

I'm sure it's probably slightly different for all of us. I saw or read somewhere on here someone saying they thought they might have stage 1 IC - would you call IC progressive?

Rhonda, thanks. I did read the diet and I think I'm already avoiding most of the things they say to. I'm keeping a diary mostly about meds and voiding..... When the doc asked me if foods/beverages bothered me, I really didn't think so, but I want to do all I can to feel better so I'm just making sure I avoid those things.

What treatments are you talking about - (if this is too complicated and long-winded - it's ok) I'm reading everything I can get my hands on about it.... What diseases mimic IC? It can't be chronic uti bc the cultures are coming back clean now. I'm tired of dashing to the lab to leave a sample, running to the drugstore to get the meds only to find out my urine is clean.... It's just weird and time consuming.

Has anyone been sorry they "accepted" the diagnosis of IC? I know it's good to have a diagnoses and go ahead and start treatments than to keep wondering, but..... has anyone ever wished they had just not gone so far as to say yes they have IC?

I already feel very sure this is my diagnosis. I'm up to 18 times today now.... Ok, I think I'm babbling. I'll stop MIKKI

[ICchell]

:hi:
and :welcome:
michelle

[kelly McC]

Hi Mikki:hi: :grouphug: :grouphug: ,
I can not take pyridium but I take urised for buring and pain and when i have a uti. My doctor said definately not to take it all the time I dont normally take it more than 2 days.
Everyones flares last different times. Mine last 3-5 days. For me I am glad I finally got a diagnose because I was spending everyother day in the doctors office and paying a lot of $$$ for test, co pays and started to feel like everything was in my head. I felt relief when I was told I had IC sounds crazy but it helped just knowing. Since being diagnosed I keep telling myself everything happens for a reason . I have a great big mouth and maybe I was suppose to spread the word.... I tell everyone who will listen to me about IC...Best wishes and take care
Kelly

[Mikki H]

thank you Kelly and all.