treatment for IC

[leelee88]

I was dg with IC 3 weeks ago, and the dr said my bladder was very diseased, well I ask him how we were going to treat the disease and he said the hrydo/cysto should help. What I am confused about is if my bladder is in such bad shape, shouldnt he put me on elmiron or something.. I am scared if he doesnt, that it might get worse, He said that as long as I watch what I eat that should help. but still im worried, I called today and ask nurse about Elmiron and she acted like she didnt know what I was talking about, so what do yall think I shoud do?

[aprilmae]

Find a new doctor? It is weird that she acted so strange about Elmiron. That is the one drug everyone seems to know is associated with IC - that was my gyns first question when she found out I had been diagnosed - she wanted to know if I was on it yet.

[L. Thomas]

I have found that the kind of MD you are going to makes a difference in not only what the MD knows but also what his nurses know.

My PCP referrd me to a gyn because she wanted to find an answer for me. The nurses in her office don't know much about IC.

My gyn knew more but he didn't connect my symptoms with IC. He reffered me to a urogyn. The nurses in the urogyn office were very informed about revision surgeries as that is what this uro was mainly concerned with. When the urogyn didn't seem to have an answer, my gyn referred me to another urogyn.

The referral to the second urogyn was the trick. My gyn insisted that if the second urogyn didn't know what was wrong he would know someone that would. The nurses in this office were extremely familiar with IC as that is this urogyn area of intrest.

Maybe you could see someone that is more interested in treating IC.

[leelee88]

Well i went to GYN, she is also practicing uro, shes calling uro to ask why he didnt want me on elmiron and if he cant give her a medical reason then she said she would prescribe it for me..She seems like a very good dr. 2 of my friends go to her and says shes great, so im keeping fingers crossed..

[Zygala87]

Hello Leelee88. Elmiron seems to be the only Meds. that may "MAY" help us. Most Doctors try a conservative approach first. My Uro put me on Detrol. I became very ill on it and had to stop. After much whining he put me on Elmiron. I've been on it for two month without a problem yet. Some people can not tolerate it. Personally I'm Praying that stem-cell research may help in the future. For anyone who is against this research, I respect your opinion. After losing so many loved one to different diseases, I'm moving more and more to this approach. Take my cells, make me a new bladder lining in a dish. Stick it back into my bladder and Pray a lot that it works. Sounds too simple and it is. I think you get my drift. Good luck to you. I care. Ziggy