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.

[ICyuck]

All I know is, I had one urologist who gave me ditropan, it didn't do anything for me so then his reaction was "learn to live with it." I asked for Elmiron, was told "no." Now, several years of suffering later, it turns out Elmiron works for me - would have worked for me way back then - but ditropan was the "it" drug in the arsenal of the uro for IC and whatever else, so....

When I went back to a new uro, he asked me my symptoms. I told him it felt exaclty like a UTI - had to pee every ten minutes, worse at night, pressure in the pelvis, discomfort with my bladder filling even a bit, etc. and he said "Oh well what YOU have is overactive bladder then, and ditropan is the drug for you..." I cut him off mid-sentence and told him ditropan didn't do diddly-squat for me since I don't have incontinence nor do I have bladder spasms.

I had to show him the previous diagnosis, the biopsy reports etc. to get him to agree it was really IC and then he agreed to let me try Elmiron and other meds.

But boy did he want to shove that ditropan down my throat, I gotta tell you...and I was NOT happy about that...since it didn't do a thing for me and since the last uro STOPPED at ditropan instead of just "going from there."

I am afraid far too many urologists are stopping at ditropan instead of just starting from it and going from there. That is my concern about "overactive bladder" and IC being considered mostly interchangeable diseases by urologists.

If you watch the commercials, it sure MAKES it seem like it's about IC..."gotta go, gotta go, gotta go right now.." sounds like me before the Elmiron - had to go all the time - so I guess I can't blame uros for thinking Ditropan is the drug to use for IC, since the commercials make it seem like the logical drug to use.

I will concede that it has helped some people here, but I still have skepticism that it helps the majority of IC patients, especially with the quotes I found on the internet from doctors who are saying, it provides little relief for IC patients.

All I am saying is, I am tired of urologist who say that ditropan - or elavil or what have you - is the end-all-be-all drug for IC and won't try other medications when a patient does not respond favorably.

Why do these doctors have such resistance to trying ALL the meds available for IC? Why do so many of them have one or two drugs they "like" and then refuse to prescribe other drugs that have been shown to help at least some IC patients?

I have good reason to be upset about this issue, because I spent three years in Hades because of a urologist refusing to prescribe me Elmiron because it wasn't on his "short list."

I am upset whenever I see signs that other urologists are thinking the same way/prescribing the same way.

If detrol/ditropan helps you - wonderful! Keep taking it! But if it provides only partial relief or no relief at all - demand to try other medications or other treatments, and don't be like me - don't take "no" for an answer and go away meekly to live in pain and misery for years!

Love, ICY

[vm]

I agree uros shouldn't stop there if the patient isn't getting relief. When I didn't respond to Detrol LA within 6 weeks my uro added other drugs b/c it was obvious that it was not helping completely and we needed to investigate other conditions, too, or try other treatments. That would be true for ANY drug that wasn't helping.

I would be ticked if my doc stopped trying new treatments after ONE drug, too. But I don't think Detrol and Ditropan should never be tried b/c some uros don't go further and I worry that someone new reading this may think it is worthless in the treatment of IC - and it is not worthless for some. If it does not resolve all symptoms (which I can't imagine it would in an IC patient) then push for more treatment. With ANY drug you should do that.

[ICyuck]

I agree that patients should go ahead and try ditropan/detrol - if it helps, it helps. I would LOVE however to see some studies on how much or if it helps IC patients as opposed to overactive bladder (detrusor problem) patients. I haven't been able to find studies done on IC patients yet, as opposed to incontinence studies.

I do know that the drugs were created to reduce wetting incidences, and that is what they were tested for, and shown successful for.

As far as I know, they were never intended to be the primary drug used for treatment of IC, although some urologists seem to view them that way.

In fact, if a person is not having bladder spasms along with the IC, I don't understand how this medicine would help. It certainly didn't do a thing for me.

Just want to tell the patients reading this - if ditropan/detrol does NOT help you with your IC, you are NOT crazy or imagining things. There are quite a few of us I think who are not helped by those drugs.

Love, ICY

[vm]

Absolutely agree with your last sentence. And for some people those drugs can cause retention. eek

These aren't studies, but some other info about antispasmodics and IC:

107. I had an IC episode 15 years ago. I was fine until about 4 months ago when it returned and it is worse now. My symptoms are frequency, urgency, constant bladder pressure and pain. I was taking Ditropan. It worked well 15 years ago but has not been as effective this time around, in fact as of a few days ago it is not helping at all. I've tried a couple of other anti-spasmodic and they aren't helping either. I'm now taking Vicodin, it is the only thing that is helping me. Why would the anti-spasmodic stop working?

A: Antispasmodics help to decrease bladder sensitivity to reduce urgency and frequency. This class of drugs does not provide significant analgesia or pain control. If you continue to suffer be sure to re-evaluate your IC and pain management tool kit as described on the website.

http://www.ic-network.com/askthemd/oct2000.html#107

Antispasmodics: ANASPAZ, CYSTOSPAS, DITROPAN, LEVSIN, LEVSINEX, URISPAS & URISED
Doctors attribute much of the urgency and frequency associated with IC to spasms of the bladder muscle. The drugs listed above are often prescribed to calm the bladder spasms. Levsin and levsinex may also be used to treat irritable bowel syndrome, a condition which occasionally accompanies IC and involves spasms of the colon. http://www.ic-network.com/handbook/oral.html#spasm

Q139: I have recently been diagnosed with IC. My main symptom is urgency/frequency. My doctor has prescribed Detrol and Levbid on two separate occasions and they made the urgency/frequency much worse. Is this common?

A: This is an unusual response to these medications and may reflect bladder problems other than IC such as poor bladder emptying and dysfunctional voiding. Follow through with your urologist.

http://www.ic-network.com/askthemd/feb2001.html#139

Medications:

A study by, Webster D. and Brennen T. Use and effectiveness Of physical self care strategies in Interstitial Cystitis and Woman's' Physical and psychological self care for acute attack states of Interstitial cystitis, the following medications were reported to Be effective against IC.

*Prescription medications (2)

Antidepressants
Antibiotics

*Over the counter medications (2)

Tums
Sodium Bicarbonate (baking soda)

*For Acute Attacks

Bladder analgesics
Antispasmodics
Antidepressants
Narcotics

*For Spasms

Anticholinergic (Ditropan)
http://www.ic-network.com/sant/sant25.html

[ICyuck]

This would be a good list to take to a urologist and say, "don't stop treating me until we've tried every one of these on the list, until we've found something that works for me!"

My biggest frustration/fear with urologists are the ones who have one or two drugs or treatments on their "short list" and who turn their backs on patients when those one or two treatments don't work.

When I heard the original poster say she was given detrol/ditropan then sent away, that reminded me of how I was treated and I was upset.

When one medicine or treatment doesn't work for a patient, doesn't it make sense to try another one, or another combination?? I know this is a question no one here can answer, maybe no one in the world can answer, maybe only God can answer, but...I gotta wonder...why are so many urologists resistant to the idea of trying the whole spectrum of treatments available for IC?

If I were a urologist, and if a treatment helped even ONE IC patient, I would keep that treatment on a list of possible remedies. If it helped more than one, I would certainly keep it around as a possible remedy!

What would lead a urologist to decide that one medicine, such as ditropan - but it could be anything else, elavil, neurotin, Elmiron, DMSO, what-have-you - is "the" treatment for IC when so many studies have shown, no one treatment works for every patient??

I'm just frustrated with my experiences and with the experiences I seem to be hearing about here...with this poster who was also given an antispasmodic but not followed up on to see if it was helping her or not...

It just seems to me that far too many urologists just don't know much about IC and don't know how best to treat it. I want to tell all the new IC patients, don't trust your doctor to know what you are feeling, or what is best for you - you have to be your own advocate, you have to print out articles to show him or her, you have to pester them and bug them and go to a million different doctors if you have to, to finally find one who will work with you to help you.

I just get the feeling that so many urologists don't know very much about IC, and some of them don't care very much either.

Love, ICY

[vm]

I totally agree, ICY. I have been talking to a "newbie" off the boards who is struggling with that feeling of almost having to be your own researcher and doctor. :( Not enough physicians are aware of the condition, first off, and then certainly not the various treatments. We do have to arm ourselves with as much information as possible. THANK GOD for the ICN. This is the place I have gotten that info. :)

One thing that helps me feel a little better about the misinformation or lack of info about IC among physicians is making folders of info and giving them to local docs. I have only done this twice (need to get my butt in gear and do MORE), but both docs were extremely receptive. These were family docs, and VERY good family docs. Neither of them even knew what Elmiron was...

So, doctor by doctor we can try to get the word out.

[mayray518]

I started out with frequency and pressure but, after the first cysto the doctor told me that I did not have IC. The pressure got worse and 3 months later I got another one done by a different doctor. this one showed petechial hemorrhages and inflammation. Sometimes another one is needed as signs may not show up in the beginning when your symptoms begin.