Is cysto/hydro necessary? Dr. wants it, I don't

[chris7]

Hi all - I'm new to the forum but I think I've probably had IC for about 15 years. My symptoms are frequency/urgency (I pee 20+ times a day), but no pain. I've just lived with it the best I can. I saw a urologist about 15 years ago and he basically blew me off, so I've just coped. I started reading about IC about a year ago and thought I probably had it, but was not mentally ready to deal with a chronic incurable disease. Well I finally saw a urologist recommended by a friend with IC, and after we talked for a while he said "sounds like IC to me". He immediately wanted to schedule a cysto/hydro but I don't think that's the route I want to go. Since I've never had the pain aspect of IC and since I've read that invasive procedures can make IC worse (I know this isn't true for everyone) I'm really reluctant to go under anesthesia and have a scope stuck in and my bladder stretched. Plus I asked how a conclusive diagnosis with cysto/hydro vs. a symptomatic diagnosis would change his course of treatment, and the only difference is that with a conclusive diag. he would recommend elmiron and possibly installations, neither of which I'm that interested in. Where we left it is i'm going to try a month of Vesicare to see if it helps with the frequency and then we'll talk again. Another reason I'm reluctant to do the cysto/hydro is that we have a high deductible insuranc policy so I would probably pay for most of it out of pocket. Can anyone make a strong argument for why I should really have this done? I'm open to being convinced, the dr. just didn't convince me with what he said. It sounded more like "well, it's just the procedure we do...." as opposed to "this is why you should really do it" .
So all input and advice and experience welcome. Thanks

[Kiyoka]

Hello Chris, I wanted to welcome to you to board! I hope you find out what you need. I am glad you don't have to deal with Pain. Man but going to the restroom that much, I don't know which is worse. I have pain..but I don't go more then 10 times aday. the way my Primary doctor states it...some people want to know if they have it, and would do anything like a cysto/hydro...or you would be a person that would rather try to relieve the symptoms. I seems like you don't really match any of those. I just think it would be better to have it on paper..that you have ic then just symptomatic dx...just incase something happpens and you want to try to get on SSI. by any chance do you do the ic diet? or have you tired any overactive bladder medications..I don't really like meds at all...they are a big pain..do you think that too?

[chris7]

Hi Kiyoka - I'm on day 5 of vesicare which is one of the overactive bladder drugs. I wanted to give it a try to see if it would reduce the frequency and feeling of having to go all the time. I'm just starting to think about the IC diet. I think tomorrow will be day 1 with out coffee. I'm not thrilled to give it up, but since coffee is on the top 5 list of foods that are bad for ic, that seems a logical place to start. I'm not too concerned about having a conclusive diagnosis. I'm certain I have IC. Even though I don't have the pain, I have the pattern of flares and remission. The thing that stinks is that peeing 20 times a day is a good day. It gets much worse in a flare. The whole cycle of I'm certain that I have a UTI, but I don't....

[Kiyoka]

Hell Chris, best of luck with vesicare, I hope it helps you out. I'm sorry your going to try to stop drinking coffee...but if it helps..yayy! I"m here if you ever have more questions.

[patricia1]

Hi Chris. As you might already know everyone responds to treatments and medicines differently with IC. While the hydro/cysto is not only a diagnostic tool it can be beneficial for some as being therputic (sp). Some people have many months of remission after having them done. ICDonna being one of them. She has had tons over the years. For me I have had 2 done. Neither helped nor worsen my IC. I go 40+x a day. I also have the interstim. I just had a revision surgery done in May and so far its working kinda of good. I know you are worried that your bladder might get worse with this procedure. And as with any of them they are your choice and your personal decisons. We can only atest to what has had happen to us using them. And not everyone is the same. I also am wondering why you dont want to try the Elmiron treatments? They can be orally, does not have to be done as an instillation, and right now is the only FDA medically approved to treat IC. It repairs the damaged bladder lining. Has he suggested to a Potasst. Sens. Test. This also can be used to diagnosed IC. This is where the first start out with water and insert into bladder drain the insert the potasst. and if you have IC you will have a reaction immed. It is then drained and licdocaine is put in to numb the bladder...I wish you the best in your decision as it can be hard thinking of what you do want to try and what you dont...

[chris7]

It's not that I don't want to try elmiron. If my Dr. was willing to prescribe it without cysto/hydro, and if I could afford it, I would be OK with trying it. Right now my primary interest is to avoid invasive procedures. If there are other things like oral meds or more holistic approaches that will bring me relief, I would like to try them first. I'm not at all against taking drugs to see if they help. I'm trying vesicare for now because my doc was able to give me a months worth of free samples to see if they help. Low dosage of Elavil seems to help a lot of people and there are some alternative approaches I"ve read about on this board today that I would be open too. I just can't risk this getting any worse than it already is. I have small children and there are already things I can't do with them (camping...) and I'm not going to take the chance of it getting truly debilitating.

[ICNDonna]

If having a confirmed diagnosis isn't important to you, then you may not want to opt for the hydrodistention. It doesn't sound like your symptoms are severe --- I'm not sure I would go for a hydro if I didn't have pain. I, however, have had periods of severe pain with IC and have found that when the pain gets bad and won't go away, hydrodistention does work for me.

If your insurance requires a confirmed diagnosis before covering Elmiron, your doctor can probably do a potassium sensitivity test. The test requires a catheter, but is done quickly. A catheter should not cause problems if it's inserted by a trained medical professional.

Donna

[Annie2]

I was DXed with the Potassium Sensitivity Test and did not have a hydrodistension. It was a very simple procedure, took only a few minutes and does not require hospitalization, anesthesia or a recuperative period. I did have many other tests including a cysto without hydro to rule out all other possible causes. Some Drs prefer the cysto/hydro but more and more are accepting the PST for diagnosis. While some drs will Rx Elmiron without either of these tests, others do insist on having results from one or the other of the tests. You might want to discuss the PST with your Dr.

The vast majority of ICers do find following the IC diet does provide a great deal of relief. When my IC symptoms began, I messed around with the diet by trying to eliminate the top 5 offending foods. It helped a little bit but it wasn't until I got serious with the diet (eliminated all possible triggers allowing my bladder to calm down after being subjected to irritating foods then slowly added other foods, one at a time, noting my reaction to each) that I found how much following the diet did help me. Through this process I was able to determine my own personal triggers and sensitivities. Eliminating coffee is a good start. You might want to consider following the full diet for awhile to see if it might help you. There are a few ICers who are able to control their symptoms using diet alone. I know the diet is very restrictive and difficult and it takes quite awhile to determine your personal triggers but many of us find it is well worth the effort.

Annie

[chris7]

I know I will have to give the diet a real try by eliminating all things that could be triggers. I guess i'm kind of just dipping my toe in by giving up coffee first. I'm finding that it's taking a while to mentally come to terms with all of this.

[Annie2]

Chris,

You are so right in taking one step at a time!!! Trying to take it all in and do everything all at once is FAR too overwhelming. Please forgive me for not wording my diet comments more clearly! My intention was to point out the full diet was a step you might want to consider for the future. When this began for me, there was no way I could have jumped right in to the whole shebang. It takes time to learn and adjust. Only you know what pace is right for you!

Wishing the best for you.

:grouphug:
Annie