Interstitial Cystitis - I would like to connect with others

I’m sorry you have suffered so long. I just started to develop IC around Thanksgiving and have been in extreme pain since. No flares...just constant and cannot imagine living further like this. Do you have flares? If so , how long do they last? Any suggestions for relief? I’ve been doing bladder installations with minimal relief.

Is there anyone on here who has interstitial cystitis? Was your onset sudden and how is it possible to live your life every day with such an awful pain? Does anything help?

Hello @mlcheyne, Are you able to share a little more about how you have been affected by Interstitial Cystitis? Have you found anything that gives you some relief?

Hi @micheyne you may have noticed I moved your post to this existing discussion on interstitial cystitis so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to find your post.

I'd like to tag fellow Connect members @bladderhelp and @51irishlass as they have mentioned this in the past and may be able to offer you support.

Hw long ago did your onset of interstitial cystitis occur? How are your symptoms?

I am trying to find a urologist in Los Angeles that treats IC. Done many treatments and still have terrible pain.

Hello, what is your symptoms of IC, because my doctor is trying to figure out if I have it as well

Urinary frequency, pelvic/bladder pain, stinging bladder, painful urination.If you google Interstitial Cystitis it will give a thorough description of symptoms & treatments. Also the Interstitial Cystitis Association and Jill Osborne from IC Network is very helpful.

I too have had interstitial Cystitis for over 30 years and suffer is the key word. I took Elmiron for years
I’m now off of it for several reasons. I now get bladder installations and they help. Have you tried that? Would love to chat with you about this.

I deal with the curse. My urologist said it's due to my transplanted kidney migrating too close to my bladder which causes the inside walls of the bladder to touch causing the irritation. Before I was diagnosed several years ago I assumed I was suffering from chronic UTIs and took a regular prophylactic low dose anti biotic. I get much better results following the IC diet and taking D- mannose. I've not taken anything for pain in the past. I usually just cancel my day and stay home but not everyone can do that. As an interesting side note...the same foods that exacerbate IC symptoms flare up my rosecea!!

I was given Tofranil for me IC. 75 mg. Still have flare ups but meds helped.