do you HAVE to get hydrodistention done to get a script for elmiron??

[alina]

hey guys!

i dont see why we have to get a painful procedure like hydro done just to get diagnosed-- why cant the doc just prescribe elmiron and see if it helps?? TIA

[jen48446]

If I remember correctly I didn't get my script for Elmiron until after I had the Cysto & Hydro done. Although I was on Detrol 3 months before the procedure which did nothing to help me that is when he scheduled the procedure. Let me emphasize this, do NOT allow the doctor to do this in the office!!! I demanded they do it as an outpatient procedure!!! I have heard waaay too many stories of patients getting this done in the office & going through excruciating(spelling?) HORRIBLE pain.

[kbdbforever]

I actually was at the ob/gyn and he gave me a script for Elmiron before I even went to the uro, he told me he would start taking it that minute or I could wait for the uro to dx, so I waited for the uro. I went to the uro and he didn't do a single test, just said from the symptoms that he thought it was IC and to take Elavil, I explained that I don't do well with Antidepressants and he said try it anyway and start the Elmiron too. The elavil, as I suspected, whacked me out so two days after I started, I called the office and they told me to just take the Elmiron and to take it out of teh capsule as that was causing stomach problems. The uro doesn't have me scheduled for the the hydro/cysto, only a pressure test and an in office cysto to just check for stones or polyps, so, I guess the answer is yes, they will prescribe it without any testing.

[vm]

No, you don't have to have a cysto w/ hydro to get a script for Elmiron. Many people here were given scripts without having that procedure. There are a lot of uros who would prefer to do the procedure before prescribing it, but it's not required at all.

[ICNDonna]

Some uros are willing to make a diagnosis based on symptoms alone. Others prefer to have a firm diagnosis first. In my own case, which was long before Elmiron was developed, I really wanted a definite diagnosis because my father had bladder cancer with symptoms very like mine. There are much better tests available to rule out cancer now, but 31 years ago, it was necessary to actually view the bladder lining and take biopsies to rule it out.

If you are not feeling comfortable with what you are being told, my advice would be to see a different physician for a second opinion.

Donna

[kbdbforever]

I asked my doctor why we weren't doing a hydro/cysto and he told me he didnt' need to, he knew that was what it was ( a little arrogant I guess ) but he also said he didn't want to put me through that proceedure s the CT was normal and the Ultrasound was normal and I am an otherwise healthy person (although I don't feel like it now). My ob/gyn that originally prescribed the meds said to just try it for 4-6 weeks to see if any improvements are noted, if not, the the hydro/cysto should be done. I guess it all just depends on who you go to, and, in my case, how hard you start crying in the office :)

[Lisa_S]

My gyn also gave me an Elmiron script when she referred me to an IC urologist. She said since it can take a while to start working I could start taking it right away. I haven't taken it yet (for a couple of reasons), but I have not had the hydrodistention yet and have not been diagnosed with IC.

[meggerz]

My gyn diagnosed me with the potassium test. Which is when they empty your bladder by a cath then they inject salt water and see if you jump off the table. They inject 3 different things so you do not know when the salt water is being injected. That is so they do not get a placebo response.

[turtlekidd]

I was diagnosed with the potassium test in my gyno's office. They said I was the clearest case they had ever seen. I guess my face went into some pretty bad contortions --- For the next few days I was in pretty bad pain, even with the resuce med. It flared my IBS, and chronic pain. I have been on the elmiron for 3 weeks. Can't tell if it is helping or not.

[Lisalady]

..I have been on Elmiron for 6 months now without having been examined or diagnosed for IC. This is due to my having no insurance with which to go through the diagnostic Cat Scan and hydrodistention that is customary. The urologist was willing to prescribe Elmiron upon my asking for it..not sure if he would have had I not asked. Self diagnosis is not a good habit, and I realized this at the time, but when you are frightened, uncomfortable, and in some pain, you need to take some action. The only worry that I have at this point is the doctor, or any doctor, will not be willing to continue with this prescription indefinitely for myself as i would wish, because they view it as "blindly" treating something. I am and have been doing well with the Elmiron, and do not wish to regress in any way back to how i felt before it began to work for my IC....Just worried at this point as to what will happen, but do not know yet. :confused:

[GOFORTH]

has anyone had trouble with elmiron and diarrhea and when they tried instills it was too painful to stand. just bearly up the tube and i almost pass out. i hear about everyone and those instills. but i i can't handle it