A few questions?

[stinact]

My name is christina I have been recently diagnosed with IC. My dr recomended that I recieve BI twice a week. The reason I went to the doctor in the first place is that I leak on myself during the day and do not feel it at all. I have burning and feel like I have to pee every second. I had no pain. After I started the BIs I decided to cut it down to once a week. Things seemed to get more uncomfortable. I refuse to take the elmiron because of the side effects it lists. Eventually I stopped the BIs. Now I am in pain all day long. I don't understand. Why do I know suffer from pain when I never had it before? The doc has no idea why I am leaking. He suggested that I wear a panty liner. Does all IC ppl leak? Another problem is that I cannot really afford to go to the doc once a week. I need some help!!! Thanks, Christina

[ICNDonna]

I'm not sure what you mean by "BI" unless it is bladder instillations?

As a new ICer, I do have a few suggestions. You will want to read the information in the Patient Handbook (link is at the top of this page), especially the section on diet. I do think it's important to follow the IC diet to see if it will help you feel better.

And --- there is the potential for side effects from any medication, including the common aspirin or tylenol most people don't hesitate to take --- and even herbal remedies can have some side effects. The good thing about elmiron is that if you do happen to have side effects, they usually go away when the drug is stopped --- and only a very small percentage of people do have side effects. If you're worried about hair loss, I suggest you examine your hairbrush daily before taking the elmiron so you have a basis for comparison. You might even clean your hairbrush after one day's use and put the hair in a plastic sandwich bag so you have an even better comparison base.

Sending encouraging hugs,
Donna

[melissacahill20]

Hi my name is Melissa I want to let you know that you are not alone I have IC AND IBS,ETC.The pain could be because you signs of IC my be getting worse or what some people say FLARE UPS.I found out that I had IC when I was 17 years old a YEAR after having my first son.For a while my syptoms were like yours I need to pee alot and then I would feel a little better after a couple of years it really got bad I have been in flare up since my youngest son was born which was 3 years ago.You need to keep an open mind and be willing to try anything that the doctor thinks could possible work for you.I have taken elmiron before had in the beging of all this it worked.I have tried everything med wise and has not worked even DMSO treatments.But I am glad I tried all of these it has made me a stronger person and if I didn't try them I would always have in the back of my mind if that was why I wasn't getting better.If you do not try new things you may miss out of what really works for you .You can not let being afraid control your decsion making you have to think about what is best for your bladder and your self.Control and leaving things out of your diet might help some of those flare ups.Try to get enough rest I know at your age you want to pretty much go -go-go but that will also catch up with you .Make sure you tell your close freinds and family what you have try to explain to them you may not look sick but that doesn't mean that you are not.With IC you may feel like your were hit by a truck but you may not look it.I have ended up going to a surgeon to have interstim placement but it was a last resort for me .My old UROLIGIST TOLD ME THAT KNOW MATTER HOW BAD MY IC WAS I STILL HAD A SMILE ON MY FACE AND A SENSE OF HUMOR.I learned that with IC if you do not try to keep a good sense of humor and a smile on your face then all that is left is to scream and cry an dbe depressed I am tring hard not to .You will have spells were you just cry and thats ok IC is scary not knowing every little detail about it and why you have it .But keep a open mind and read alot about it on all the different web-sites.Keep in touch if you need someone to talk to.