Discussions that mention pyridium

Urology board

I would call/write to the records dept and ask for a copy of your records there. It should tell you in them if he performed a Hydrodistention at the time of the Cystoscopy. Some Uros dont do them routinely, while many do. As you know, every Dr. has his/her own way of doing things.

Even if you just had a Cystoscopy without the Hydro, there is still merit in that. I am not saying that was a waste or anything. In fact, most Uros will do a Cystoscopy first (usually done in the office), to get a look inside the bladder and check for abnormalities. They generally will do a biposy of the bladder at the same time to rule out bladder cancer.

The reason not all of them do a Hydro at the same time is b/c with the Hydro, you are cathed, and the bladder is filled with water, stretching it WAY beyond the normal capacity that you could tolerate if you were awake. (That is why it is done under anesthesia.) Stretching the bladder enables the Dr. to see micropscopic tears and fissures, as well as pinpoint bleeding, that he would not be able to see with the Cystoscope alone.

Think about it this way....if you take a T-shirt and look at it thrown over a chair, you dont notice the weave of each little thread all connecting to form the fabric. However, if you pick it up, pull it and stretch it, you can see the little threads in the weave that you didnt see before. (Sorry for the crummy analogy, but that's the best I can think of!) Anyway, it is the same with our bladders.

Since doing a Cysto/hydro is a surgery, b/c you have to be anesthetized, it is much riskier b/c of the anesthesia. That's why many Drs. try the Cysto first alone. Because they can do it in the office and it isnt surgery, it is a procedure.

Also, some Drs. choose not to do the Cysto/hydro b/c they have ruled out most other things already based on symptoms, so they decide to opt to treat it as though it is IC with a conservative treatment plan of Elmiron, Elavil, and a med like Detrol and Pyridium, and see how the patient responds. Then, if the patient does well, then there is no need to subject them to the pain and expense and risks of surgery. But, if they Dont do well, most URos would proceed with the Cysto/Hydro.

Does that make any sense? I hope so. It is late, and I am tired, so if not, then I plead exhaustion. (It is 2 am here.)

Anyway, even though the Dr. is from the Mayo Clinic, it doesnt mean that he is knowledgable about IC. If he isnt, it doesnt mean he is a bad Dr., it just means that he doesnt have alot of experiance in this area. But, whatever the case may be, he made no diagnosis, so a 2nd opinion is definately in order. You are already going to have to go to another Uro to find out what they think is wrong, so I guess what I am trying to say is it would be a good idea to find out if the Hydro was done before you go. If it wasnt, and the DR. suspects IC, they may do the Potassium Sensitivty Test (in the office) to try to d/x you.

Lastly, even if he did a Cysto/Hydro and nothing was found, you could still have IC but have no visible signs of it in your bladder, but have the symptoms. There are several IC patients who have been d/xed based solely on their symptoms.

I hope and pray that you have something besides IC, something that is easily remedied with a prescription (like an antibiotic). No one wants a disease that is life-long and has no cure. However, based on everything you told us, it sure sounds like IC. Particularly since it is often a diagnosis of exclusion. (Meaning that they rule out everything else and when they cant figure it out, they decide it is IC.) Since the other things have been ruled out (he said he couldnt find anything), that is another reason I suspect IC.

If you do a web search on Interstitial Cystitis, you should run across the ICA. It has loads of information there. (I think it is okay to post about them, since they dont have a message board. ???? ) Anyway, they are a very reputable source for Information. You can read information there about patients who have been d/xed with IC that have no visible signs of it in there bladder, yet have all the symptoms of it (like you do.)

I hope this helps. Again, I truly, truly hope that it isnt IC and that whatever it is, you get a d/x soon. It IS very frustrating to not know what you have and have to go from Dr. to Dr. (It took me 7 yrs to get d/xed, so Believe me, I understand the frustration!) Part of the problem is that up until the mid 1980's, IC was classified as a psyciatric condition. Yep, that's right, Drs. thought it was a "hysterical woman's condition" that was psychosomatic. So, it only gained credibuility in the last 20 yrs as a legit disease/condition. Now, some ICers (myself included) even qualify for Disability by Social Security because of IC! So, we have come a LONG way! However, Drs. that went to school before the mid 1980's were all taught in med school that ICers are head cases and those DRs. are still practicing medicine. Even if they have read up about it and realize what they originally were taught is wrong,many still have those old prejudices in THEIR heads! That is very hard to overcome. But worse, is the ones who havent read that it is now a legit thing and that we are truly suffering, and it isnt psychosomatic. As for them, they STILL are thinking that it isnt legit.

So, it is a hard battle we fight, but knowledge is power. I have learned to be my own researcher and my own advocate. I now take pics of my bladder and print outs of Govt sites and scholoraly articles from "Urology Today" and the "New England Journal of Medicine" and give it to Drs. I encounter who are from "the old school". While that may or may not change their opinion, at least I am doing my part in getting the word out. That is all I Can do!

Wow! Sorry this was so long! Whatever you end up having, I hope and pray you get a d/x soon and some relief soon. I definately feel for you.