Any Other Ladies Dealing With Intersistial Cystitis?

White Picket Fence · ‎10-20-2012

Hi, I got this illness in 2001 at age forty two. It has changed my life. I can't go to many places I used to enjoy. It really takes a lot of things away. I have the frequency issue and so it isn't pleasant. I look at people walking around not knowing how lucky they are just to do that. Now my stomach is sticking out! Big time. I heard this can happen. My legs are thin and so are my arms. But this stomach is making me crazy. I want it to go away. Now trying to find clothes to hide it. I know there are people who get horrible pain with this illness and I feel terrible for them. I'm lucky I so far have not been living in pain. How about anyone else. Do you have this and how do you deal with it? Are you able to go any place, how do you do it? Thanks

Hearts4Me · ‎03-10-2010

Hi! Yes, I totally 100% understand. I was diagnosed with IC when I was in my early 30's (I'm 61 now). It absolutely is life altering. Sounds dramatic, but true. My bladder feels like it's on fire 24/7. Almost as if I have 'injected' it with BenGay menthol ointment. That kind of fire. Miserable 'burning' that never ends.

I can't reply much more now as I have an appointment, but I wanted you to know you are certainly not alone. There are support groups on FB, and other places, too.

Dance34 · ‎09-02-2014

hi yes im dealing with ic to. I was diagnose 2001 and im in alot of pain to. I have tried everythiing from the cocktail to the elmron and now i just use hydroxzine. it helps alot. I am sorry for you. yes my belly pokes out to especially if i eat bad food. It just means your bladder is pretty much is spasm out. just try to eat good and it will be something we all live with all are lives. hope you can find belly relief. Take care of yourself.

depglass · ‎03-10-2010

Waving hand wildly, me, me ! I figured out I had interstitial cystitis on my own. I was constantly being diagnosed with UTI's and given antibiotics. If it didn't clear, they'd give me another prescription. I once went to the emergency room in the middle of the night and believe it or not it was quiet enough for the doctor to tell me "You are culturing negative for bacteria." Walked out with another prescription. It just didn't make sense, I suspected interstitial cystitis so I started to use phenazopyridine hcl for urinary pain. By then it was OTC. By the way, eventually I did go to a urologist and had a scope done, can't think of the name. Here I was, viewing the inside of my badder on a TV screen. There were red dots all over, he said that was the cystitis. I have learned what bothers me by trial and error. Sadly my favorite local coffee shop was one of the major culprits. I can drink McDonald's and at home I drink a mixture of McDonald's and Folger's Half Caf, no more than three cups a day. This condition causes slight incontinence and annoying frequency, but the pain part is pretty much manageable. I might get too much acid in a fruit or whatever and I just rely on the phenazopyridine. Look for it with the AZO products.

sydsgma1 · ‎03-09-2010

My IC was so severe that I had my bladder removed . It was a difficult surgery and a long recovery, but my pain is gone. I was at a major university research and teaching hospital

nambee · ‎05-08-2022

After several years of being misdiagnosed with UTIs, I have recently found I have IC. The ic-network dot com has been a wonderful source of info. It was suggested by someone in an old thread in this forum. Am following the suggested dietary limitations and taking Prelief in the few instances that I eat or drink anything acidic. Oddly enough, I just cannot drink tea anymore at alll (doesn't matter if it's decaf or green tea.) Just started taking Desert Havest aloe vera and it seems to be soothing. It's a very complicated condition that can be triggered by a myriad of things. You need to be your own detective as sometimes seemingly innocuous things can trigger a flare. Best of luck!

depglass · ‎03-10-2010

Would you care to tell us how you get along withnout a bladder? We have a friend who had his esophagus removed and they just hooked his stomach to his throat. Like above poster I cannot drink tea anymore. I can drink ginger tea, though. A definite and logical no-no is cayenne pepper, although I can eat mildly spicy foods.

Toppers3 · ‎10-25-2016

@White Picket Fence wrote:
Hi, I got this illness in 2001 at age forty two. It has changed my life. I can't go to many places I used to enjoy. It really takes a lot of things away. I have the frequency issue and so it isn't pleasant. I look at people walking around not knowing how lucky they are just to do that. Now my stomach is sticking out! Big time. I heard this can happen. My legs are thin and so are my arms. But this stomach is making me crazy. I want it to go away. Now trying to find clothes to hide it. I know there are people who get horrible pain with this illness and I feel terrible for them. I'm lucky I so far have not been living in pain. How about anyone else. Do you have this and how do you deal with it? Are you able to go any place, how do you do it? Thanks

I found that bladder training also helped.

I was working with my doctor on that at the time. You add time on to the amount of time that you wait until going to the bathroom, even though you have the urge to go. It's also called bladder re-training, I think.

So, if you feel like you have to go in ten minutes, you try to wait for another five minutes, and then you add on another five minutes at a time gradually.

I was also taking medication for other health issues which inadvertently helped to calm my bladder down.

Someone also mentioned Hydroxyzine, too. It's an older antihistimine and has been used for helping this condition.

It's best to talk to your doctor about what treatment options can help you.

My bladder was really painful and inflamed for a really long time, and when I had it checked again, it was looking good.

I've been left with urgency and frequency now and urge incontinence if I don't get to the bathroom in time, so I'm now considered to have an overactive bladder, instead.

I do see a Urologist for my bladder and for kidney stone care as well, and I do take medication to help with my bladder.

Like others of you, I avoid certain beverages and foods.

I was not a coffee drinker, but I used to enjoy drinking tea. That used to aggravate my bladder so I no longer drink it.

There are some types of spicy foods that will cause a burning feeling in my bladder when I eat them. With those types of foods, sometimes it's just a trial-and-error kind of thing.

sydsgma1 · ‎03-09-2010

@depglass

I have an Ostomy with an external bag. The docs used part of my intestine to create a tube for the urine to come out. My stomach is about 1 inch in diameter and I use an external pouching system

once everything settled down, I rarely have leakage issues.

I have traveled extensively, was a district administrator in a large metro school district and sung in professional choruses.

White Picket Fence · ‎10-20-2012

Thank you so much for your response. I was sick after I posted this post and just now am getting your responses. It is so awful having this. I am on Hydroxyzine also and got IC in 2001. I hope you are doing okay. xo