Interstitial Cystitis

[Ishta]

I was recently at my physican's office for a possible UTI (which I have a history of), and the urine culture came back negative. I figured it would, because these symptoms were somewhat different than that of having a UTI. The similarities are that I have to a big urgency to urinate and it burns or hurts after urination. But the difference is that with UTI's the pain is limited to urination. With this possible IC I have pangs of pain that come in waves. It seems to hit my bladder and urethra. So, I am certain I have this condition. It occurs mostly at night. I am not stressed out at night. Why than I am in such pain while trying to sleep?
I have an appt. this week to make certain my condition. After reading about IC it seems awfully depressing - to know that there is no cure and that I will be yet another one out of millions that suffer from chronic pain. My quality of life is already diminished. I am only 31 years old.
My question is this - what is the difference between IC and pelvic floor dysfunction?

[sadone]

Hello,
Not sure what the difference is but look up pelvic floor dysfuntion on the internet and it will give you some info.
I think everything down there is somehow connected.
The first thing for you to do is have your bladder checked out for IC or anything else.
This is usually done with a cysto (you are put out for this procedure). Your urologist will look at your bladder inside. I do know that the pain is greater at night and when you are lying down, or sitting in a car or at a desk for too long. I too have the pain at night, it actually wakes you up if you are sleeping for a bit. I am 43 years old and understand what you are going through. Make sure to ask alot of questions, don't just get another antibiotic for a possible UTI. I also have pain above the pelvic bone, feel pressure down there all the time. Sexual intercourse has always been painful for me. I also feel swollen and sore in the cervix area. Almost like after you have a baby and everything down there has been affected. I too have waves of pain, usually on the right side, almost like a muscle spasm in the bladder. I also can get twitches of pain off and on that make you jump off the chair!
This website is good and also the ic-network.com will give you lots of support and info.
Good luck with your appointment.
Keep in touch.

Sad one.

[kichikoi]

I can relate to you both...just posted for the first time on this site and all my symptoms seem to parallel yours!

You recommend the cystoscope being under general anesthesia as well? My urologist, whom I've never gone to yet, said they do 'em in the office 30x a day...yo, that sounds like a large amount...don't want to feel like I'm going to a factory outlet..LOL...and staff said it's not uncomfortable...hmmmmm????
If you're already in pain down there, how can that be? I suspect they might numb you b4 they insert it? Can anyone comment on this for me - thanks.

I am truly amazed at how common and proliferic this diagnosis is...I have a sneaky suspicion this is what I have, too, unfortunately and today I began reading up on it b4 I even go to the urologist tomorrow so I can feel comfortable asking questions with some authority which is my nature...I'm a holistic health counselor so believe in alternatives

I have to say, I'm getting a wee bit stressed seeing what most of you women on this site have been going through...it is alarming yet comforting that we can help one another...so anyone who can help direct my first approach to this is certainly welcome

[jennro27]

HI Kichikoi,
I had a cystoscopy without anesthesia about 4 months ago to diagnose my IC. They offered me a small amount of lidocaine to numb my urethra before inserting the scope, I
took it, and it really was not all that bad at all, I felt some pressure, but it lasted about 5 minutes, he looked around and told me he saw nothing( which indicates IC ). it was done in the office. I don't think general anesthesia is required anymore( at least that is what my doc told me). i have been on Elmiron for 4 months and it is helping mr.
Jennifer

[kichikoi]

Hi, Jenn, so nice of you to give me a heads up, so to speak...it's funny how the universe puts you in the path of ppl who have experienced what you're going thru...and it's been that way all week.

I just met a woman at the health store that I frequent and she told me just about what you said...it's no biggy, they numb the area and it's not that uncomfortable...while others say it's better to get knocked out...I've got a high threshold to pain so I'm optimistic I'll handle it ok...and the less anesthesia one gets the better is my theory!

I want to thank you for giving me your story and support for my upcoming journey...it is soooooo much appreciated...

I'll keep you posted...this urologist I'm seeing has treated my husband just the past few months for prostate - BPH, prostatitis, did some biopsies that thankfully came out negative...yet he wants to rule out any bladder issue for him as well....SO Monday we're going for a "two-for-one family discount cystoscopes" - too funny, huh? yikes....I'm first...then tues I'm getting a CAT scan of pelvic area to rule out stones, etc. He also put me on a strong antibiotic again, this time 500 mg...and he feels my menopause might be contributing to this too...not a shock there! I just told him I'm holistic compared to my husband...so he'll have to work with me...so even being on antibiotic now is a biggy for me...although I'm on probiotics so it shouldn't upset my stomach/intestines/bowels too much

will keep you posted once we know what he thinks

you're a doll

Jean

[kichikoi]

Jenn, BTW, how did you react to Elmiron or however you spell it, and what kind of side effects, if any, have you had? What significant changes have you experienced being on it?

[jennro27]

Jean,
I have had no problems whatsoever on the elmiron. I was nervous because I had heard about all the possible "side effects". it did take about 6 weeks before I started to notice some relief though. Now i have"waves" of discomfort and burning that come and go, instead of before where the discomfort and burning was constant everyday for 4 months before I started the meds. I had a abdominal CT scan also, which was negative. They have to rule out everything I guess. i am changing urologists this week, the new guy I am going to see is a little more experienced with IC. He also believes in a phytonutrient
approach,so I will try whatever he suggests. Good luck to you and hubby.
( don't you love how doctors blame everything on menopause?)
Jennifer

[kichikoi]

Okay, cystoscope done: dr said bladder looks normal
(and after high dose antibiotic feeling 50% better)

doing CAT scan tomorrow I guess to rule out stones or mass

Fri some type of bladder rention test in urologist's office

he seems pretty tight-lipped, yet wants all the tests in b4
telling me anything other than bladder looked ok

we had some laughs during procedure today so all in all
I feel better and more relaxed...one down, a few to go

keep you posted

[llthomas47]

I've been on Elmiron for two months today. They say it can take up to nine months before you know if it works. I was on it a short time and felt really good. So good, I wondered if I really needed to take three pills a day or any at all. However, that lasted only a short time. I am bothered everyday with the pelvic pressure and some urgency. Unlike what I have read here tonight, I feel better when I lay down and I don't have any trouble sleeping. You read of the foods and spices you should avoid, but does anyone know what you can eat, if anything? I'm hoping the Elmiron will start working soon. I've also been taking two Prelief before each meal - doesn't seem to work. I even try the ASO tablets - which sometimes provides some relief. Tonight I was thinking I will have to deal with this the rest of my life - an unpleasant thought.

[kichikoi]

I'm glad the Elmiron is working for you two ladies...not sure if I'll be going on it yet - just good to know it seems to be giving some relief. Not sure of the side effects, but like most pharmaceuticals I'm sure it's daunting. I'm thrilled your new dr believes in phytonutrients...bravo! let me know what he recommends...my naturopathic dr was in disbelief I even tried to go on antibiotics...but pain is pain and I wanted to feel better quick...discomfort in that lower region for me is not one I chose to deal with lightly...and there's probiotics I take - and I'm on NO other meds - so a course of antibiotics won't throw my system off too much.

yeah, menopause is the culprit for alot of talk, huh???!!!

I, too, felt overwhelmed when reading all about this IC and how debilitating it can be...all I can say is I'm a pretty positive person most of the time...yet this is draining...I only hope it isn't going to be labeled such...if it is, I will deal...as I hope you all can - day by day...

Our thoughts are everything...you gotta think the good ones! We have to manifest what we want...

The CAT scan didn't show any stones (according to the radiologist/dr on staff who gave me contrast injection)...but he saw air in my bladder...suspected it was from the cystoscope the day prior...it had better be! Or he said it could be a fissure...oy vey!
He even contemplated not doing the contrast since he saw no evidence of stones in bladder or kidney, although one kidney was a different shape...my luck! LOL

I told him to do it, just in case it showed like a mass or growth or tumor, what have you, that could be the cause of the pressure....and just in case the urologist sent me back, why make another trip ...just get it over with.
He said he'll pass on the results to the urologist to discuss what else it showed...cryptic...but again I'm feeling it will b ok.

And I have to say, I really think the antibiotic is helping along with him stretching my urethra during the cystoscope...(he said it was tight - sure, the only thing on my body that's tight that shouldn't be!!!)it's made a drastic difference already....who knew!!!
I teased my hubby, mabye I'll be going back for an annual stretching if that's what does the trick...it truly is like night and day...big improvement! ahhhhhhhhh - I consider myself in shape, but that was too funny to hear him say that...I teased the doc too, saying you know, "God's design for the position of the urethra was a little faulty!! He should of moved it to the side so it didn't get irritated and we'd all be getting more!" LOL and he goes, "what do you think, he should have put a vodka and tonic there first?""!!!!!!!

We really laughed alot, thankfully, otherwise seeing those long tubes going in down there would give you nightmares!!!

keep you posted about the retention test this Friday...
wishing you all less awareness of the nether region down under...

Jean