not sure if I have IC

[gwennyx99]

My troubles started about three years ago. I began to have recurring UTI's, about once a month. My cultures were positive sometimes and negative other times but my symptoms would always go away with antibiotics.

About a year later I began to feel like my bladder was never empty. I thought it was just another UTI but my symptoms did not go away with antibiotics. I went to a uro and he said I just had an overactive bladder caused by all my UTI's. I went on Detrol for six months which did not cure my symptoms. I then had a cystoscopy and the doctor said he found nothing abnormal and did not know what was causing my symptoms. My symptoms eventually went away and I thought it was gone for good, but my symptoms came back a few months later. I then went on Ditropan and Hydroxyzine which did not help either.

Over the last year my symptoms have come and gone. I don't have pain or frequency like other patients with IC so i am not sure if I have it or not. My only real symptom is never feeling like my bladder is empty, but it is disrupting my life. I would love to hear any sort of suggestions. Thanks so much!
Gwen

[auntiedeb]

Hi Gwen and welcome to the icn family. You will find loads of support and love and caring here. Have you thought about going to another uro for a second opion for ic? Please find someone that is knowedlegable about ic and belives that ic patients have pain. I have ic and overactive bladder also but I think the freqency and urgency are worse when I am in a flare. I suggest that you read browse our site and start with the ic diet and read all the things you can. I will be praying for you. Please keep us posted. Please email me anytime. My email is at the bottom of the page. Again welcome.

[ICNJess]

Hi Gwen,

Welcome to the boards! You might want to try PFD therapy, that could help with emptying your bladder.

Hugs and love
Jess

[helenbb]

I hope there is help for me. I have had severe bladder spasms off and on for the last 5 months. I have been treated with antibiotics even though I have been infection free for a long time. My doctor has no answers for me. He says my cysto showed no bladder wll changes. Can I still have early stage IC with no bladder wall changes. i am hoping to get a referral soon to see an IC specialtist at Stanford. If sanyone out there has been diagnosed without bladder wall changes please help me. I feel like I am going crazy

[ICNJess]

Hi Helen,

There are some girls on here that have had normal cysto's...but I am curious, did you have a hydro with your cysto, or just an in office cysto? An in office cysto will most likely not show you to have IC, it is often found when the bladder is distended.

I get horrible spasms! You could be in an early stage of IC. Try the IC diet until you can figure out what is going on with your bladder, that could really help to elminate problems. Good luck, if you have anymore questions, feel free to PM me.

grouphug

[liz2]

Uros kept doing office cystos on me and said everything was normal. When someone finally did a hospital cysto/hydro uder general anesthesia, my bladder was far from normal. It was badly misshapen, and I had a Hunner's Ulcer that went across the entire floor of my bladder. So, yes, you can have so-called normal finding in office cystos, and the doctors can miss even the most advanced case of IC like mine was missed over and over again.

There is also a uro in my area who repeatedly misses the IC diagnosis even with the hospital cysto/hydro. He doesn't know what he is seeing in the bladder when he does the procedure. Many patients have gone beyond him to receive an IC diagnosis from a more knowledgeable uro who is better trained at recognizing the tell tale signs of IC.

[ICNDonna]

My suggestion would be to seek a second opinion from a urologist who is not in the same office practice as your current one. IC is not usually visible with an office cysto without over distending the bladder. When I had my first visit with my uro and had my first cysto, my bladder appeared to be healthy and normal. When my symptoms stayed, he did a hydrodistention with anesthesia and the IC was apparent.

There's also a potassium test that can be done in the doctor's office and will diagnose IC in many cases.

I hope you don't have IC, but if you do, diagnosis is the first step in learning how best to control your symptoms so you can live comfortably.

Warm hugs,
Donna

[ICyuck]

Argh! I am so sick of urologists who think "overactive bladder" like the commercials say and then prescribe a medicine that was invented for incontinence (inability to hold urine). I truly believe that it will come out eventually that ditropan and detrol do NOTHING for IC patients - bet there will be a big scandal when it comes out too - because right now Uros are falling for the commercials apparently and thinking that this stuff cures IC when it doesn't.
The power of advertising coupled with profound ignorance on the part of urologists about this disease! Hmph!!!!! Bah humbug!!!!

I hope so much that your doctor will let you try some of the drugs that have been known to help some IC patients, such as Elavil, Elmiron, DMSO, etc. and give up on the detrol since you have an IC problem and not an incontinence problem.

Love, ICY

[ICyuck]

P.S. I guess at least some med folks out there realize that ditropan/detrol are almost useless drugs for IC patients..

found this quote from a medhealth site where people ask questions answered by docs...

XXXXXXXXXXXXXXXXXXXX
Contrary to what you may have thought , most patients with IC do not have a significant amount of improvement with ditropan.
XXXXXXXXXXXXXXXXXX
Also noticed that ditropan/detrol did NOT include IC patients in their trials - specifically excluded them in fact - perhaps because they knew their product did not help IC patients?

Anyhoo, I am very sick of urologists always giving us ditropan and then acting very amazed that it did not cure our IC.....

Love, ICY

[ICyuck]

Another quote from an ob-gyn question/answer site...

Show this to your uro if he or she insists that ditropan/detrol are THE big drugs to treat IC and that those should be enough to cure you of IC and that if they don't help you then you are crazy and there aren't any treatments for you....(my first Uro was a BIG believer in ditropan/detrol for IC....and yup I am still mad at him over that and mad that other IC patients are being told that Detrol/Ditropan works for IC...!)

Love, ICY

XXXXXXX
(Detrol LA)

Not useful for the majority of patients,
since interstitial cystitis is a sensory
disorder of the bladder, not a problem of
bladder overactivity.

(Ditropan XL)

Not useful for the majority of patients, since interstitial cystitis is a sensory disorder of the
bladder, not a problem of bladder overactivity.

[Iris]

I know if it were me, I would definitely seek a second opinion. I know I was given Detrol and Ditropan at one stage and it did not help me at all. I changed uros, and I am so much happier now. I am on the meds that help my IC, and lead a fairly normal lifestyle. Hope that you can get some help, I think bladder spasms are the worst, luckily I only experienced them for few weeks after my surgery, so I can really feel for you and your situation. Take care and let us know how you are doing, hugs Iris hi grouphug

[vm]

Detrol LA has helped me and I have never had an incontinence problem. Did it cure me? No. But it did take the edge off a little bit. Each time I have tried to go off of it I flare.

[vm]

What commercials are saying Detrol and Ditropan are for IC???? I have never seen those. I always thought it was advertised for overactive bladder - a separate condition. For some OAB is just frequency or just urgency or just incontinence or all 3. Bladder spasms can be a part of IC and that is what Detrol helps with:

Q127: Are bladder spasms associated with IC? I recently went to another Urologist b/c I felt the first one misdiagnosed me with IC. This Urologist did a test on the bladder that is visual on a computer and it shows how it empties and fills, during this test my bladder was spasming so bad we stopped twice. This doctor is confident that I am having severe bladder spasms and that was causing the pain I was having with urination. How long should I take this Detrol and what other problems can come from bladder spasms? Thanks for your help!

A: The test you had is called a cystometrogram and measures the ability of the bladder to hold a water load and its ability to stretch to accommodate that water volume. The spasms you had are called uninhibited bladder contractions and can occur in a variety of bladder disorders. Bladder spasms are a sign of an underly problem and you must further question your doctor as to its specific cause. A partial list includes interstitial cystitis, bladder stones, and severe chronic inflammation of the bladder lining. Detrol and other medications that help control bladder spasms are typically prescribed for long- term use.

http://www.ic-network.com/askthemd/feb2001.html

Does it help all IC patients? Certainly not. But it can help some. I don't think of it as one of the main IC treatments at all - but it is one that some uros try first.

[Annie2]

Detrol LA has helped me a great deal and I wouldn't want to be without it. Detrol is not a cure-all for IC. It does reduce frequency for many IC patients. Without it, I am up frequently through the night. With it, I usually only have to get up once. Like so many other things, it does not help everyone. For those it helps it is a blessing. Doctors frequently start treatment by trying Detrol or Ditropan and go from there. Sounds like the "go from there" part hasn't happened for you.

I do agree with others, Gwen. It sounds like getting a second opinion might help you. Hope you quickly find a knowledgeable urologist who will give you an accurate diagnosis of your problem and then follow through to find the appropriate treatment for YOU.

Annie

[vm]

Love this line, Annie

Sounds like the "go from there" part hasn't happened for you.