I talked with him

[waterflow]

I spent all last night crying, which I have not done in a very long time. It was over the post I deleted yesterday. I talked with my doctor today and told me it was NOT MY FAULT that I am still in pain. That new pill that is going around is not safe to take. Also, having the bladder out is not an option for this either. There are complications with it, major surgery and I could still have the pain after the bladder is removed. Everyone has the right to try what he or she wants and just because they will not try what everyone else is trying does not mean they deserve to be in pain forever. Or be told they are not trying. No one knows what any of us have gone through because of the IC. Plus what helps one person chances are does not help thousands of others. In the beginning of this I heard from everyone how I caused it. I did something to make it happen and with the help of my doctor I got through that. I do not think it is fair that I have to relive that again. If some of you feel you can try some of the more serious treatments that is fine. If it helps you that is good as well but I should not have to feel like I am the cause for me to still be in pain. I am going to take time and with the help of my doctor hopefully I can get past this. You might delete this thread but at least I have said what I have needed to.

[vm]

:kissing: I'm glad your doctor was available and able to set your mind at ease. :)

[ICLori]

Wishing you the best.

Blessings,
Lori
_________________________
Cyclosporine-A is both safe and effective for IC, researchers say, with a success rate of 75% or higher.

In remission on CyA since 5 Aug 2006

[Sarojini]

I'm glad your urologist said what you needed to hear. Of course, you did not cause your IC; it just happens and no one knows why.

I'm sorry you feel you are going to be in pain forever and that it is better kick back and do nothing, but of course, I support your decision unconditionally. No one else can tell you what to do!

Good luck in the future.

[ihurttoo]

Oh sweetie of course you didnt cause your IC! Please dont let anyone tell you any differantly! I have no idea what all of this is about, but it is never hopeless! There are always new meds to try, new therepies, new treatments, herbs, etc. No one has to try anything that makes them uncomfortable. Some people swear by certain meds, and that is great! Others cant try them or dont want to try them and that is okay too! Same thing for instills. For some, they are a miracle, for others a nightmare. Some want to do them, others dont, and it is always fine whatever you choose to do. Same thing withh Pelvic floor therapy. Some try it and get great relief, others are weirded out by it and dont want to do it. It is all okay. Meds are the same way, same with the interstim, same with nerve blocks, TENS units, biofeedback, herbal and alternative things, you name it and there are supporters for it and those against it.

The important thing is to never give up hope and to always keep looking for what is going to work for you. Your drs should also never give up hope and should also constantly be on the look out for something that will be your miracle, because I still believe that there is something out there that will at least give relief to all of us, even if it may not cure us. However, I dont think there is one cause of IC, nor one remedy for it. I think everyone must find their own path. I hope you find yours soon. Hugs, Amy

[green_the_fish]

I'm really sorry you're going through this. I'm sorry if something I or anyone else here said came across in a way that made you feel uncomfortable. It is not your fault that you have IC. No one deserves to have IC.

We will still support you if you decide not to pursue any treatment options. You still deserve to have support, no matter what you choose.

Lori is right; some people do go into spontaneous remission. May you be one of them :)

Best of luck :grouphug:

[Kara29]

Waterflow,

No matter what treatment option you decide to use or not use. I will support you. I am on the other end of the spectrum and decided bladder removal was the best option for me and when I decided that I had a LOT of criticism over it and VERY LITTLE support. I will never forget what some people said to me when I made my decision in 2002. Your body is yours and you are the one who chooses how to treat it and why. You only have ONE YOU and the best thing to do is listen to your heart. If you don't want to try certain things then it's what you and your body chose to do. I pray that you find peace somewhere along this IC journey and know that some of us make choices that are NOT THE NORM and that is OK.

HUGS!

Kara

[waterflow]

I seem to still be crying. Can’t stop thinking about everything from the beginning of the IC. I feel like I am all-alone now. I never said that no one should try any of the pills or surgeries I won’t do or have their bladders out. Just I am not able to do that myself. I’m scared to try it them.
Green the fish-you did not say anything to offend me.
Kara-I am sorry that someone said something to you to make it hard when you decided to have your bladder removed. That was your choice to make and no one should have said any different. If you are happy with it then so am I. I’m glad for everyone who has found something to help. Right now I am at the point where I just can’t do anymore then what I have been doing for the IC. There was a time long ago that I was happy with just the heparin and hydroxyzine (had finally found something to help) but that did not last. Not because of me not being happy with it but because most everyone told me how awful it was to have to do that for life. Maybe I’m wrong for feeling the way I am over the post but I can’t seem to get past it. Thought maybe talking to my doctor again about it but then again maybe not. There are times when I post just to “get things off my chest”. No one has to reply. I change my mind a lot about things that have to do with the IC but I still go back to just waiting for now. It does not mean I can deal with living with the IC pain for the rest of my life. There have been people that I never got to see again before they died. Never felt good enough to travel to see them. One time I did manage to get to one of them and found out they had died. No one bothered to write and let me know. Do you know how I felt and still do? I just feel like I don’t belong anywhere and maybe it is my fault. If I did sound mad at what anyone replied to in my posts I did not mean for it to come off that way. Also, I am not the person that was mentioned. I’m sorry if I hurt anyone’s feelings in the past. Right now I feel so alone. I guess since most of my life I was always dumped by everyone because I didn't fit or I couldn't do any work for them it makes it harder for me.

[ICLori]

I'm sorry you are still sad. :( IC is just an awful disease. I feel sad when I'm hurting, too.

I'm hoping so much that everything will be okay for you soon. I have heard of IC'ers going into spontaneous remission, and I hope so much that will happen for you very soon.

I'm also very hopeful about the new treatments I am reading about, where they are doing trials for new medicines. Seems like there are two or three new meds they are trying on people now, which means they are pretty close to getting FDA approval, if the trials go well. So there is much to look forward to, I think that we will have safer, more effective meds for IC very soon now!

I hope that things get better for you very soon and that you feel better soon too.

Blessings,
Lori