Describe Pain

[SandraCT]

I was wondering when people say they have pain from IC, what does it feel like? For instance when I feel what I think is pain from my IC, I mostly feel burning down below in the crotch area (sorry to be graphic). There have been times the burning is unbearable. When I was having a real bad flare last week and went into a wave pool at a water park, I went to the ladies room because I felt the urge to pee so bad that when the urine came out, it actually felt very hot. I know this sounds strange. Right now I have the burning and feel like the urge to constantly pee but not much comes out. I do not currently have any infections. Is this what your IC pain feels like? I have other issues as well but I also get a lot of pain in my legs/groin/pelvic area. When you say that a certain food(s) bothers you, do you get the burning feeling or is it a different type of pain? I have never really noticed what foods bother me except for green tea and certain drinks. How do you tell what food it is causing the problem? Maybe I should eat one thing at a time to rule it out. Thank you as this is very frustrating. :cussing:
Sandy

[IC SARAH-CPP]

What I did was to cut almost everything out that was on the list. I mean everything, even the ones that said sometimes okay. Then I started adding in foods that I REALLY liked and missed. I did that one at a time and if I was okay the next day, I added another one, etc. This takes awhile but I was able to identify my problem foods/drinks pretty quickly once it got going. I am lucky because I am not really food sensitive at all but I am very drink sensitive. Almost all drinks except water and 7up bother me.

I describe my pain as burning too. Burning, stabbing, shooting pain are terms I use to describe it. I always told my husband that it was like someone sticking a burning hot knife up me. Or that it felt like my bladder was full and I was peeing out glass.

You could try to keep a "food journal" to write down reactions to certain foods/drinks. That might help sort out your trigger foods. Good Luck!

Sarah

[SharonA]

When I have IC pain, it feels like my bladder is burning. Since I am usually feeling good, I would say that this is a flare. I also have more frequency when I flare. I can go and then a couple minutes later, feel like I have to go again. Sometimes it is just a drip.

I sometimes get what feels like a shooting pain in my urethra. That usually happens when I really, really have to go and try to put if off. I think it is my warning that I had better find a bathroom soon. Once I go, that feeling goes away.

My urine sometimes feels hot also, but I don't think that is unusual. It just feels that way because my outside temp is cooler than my inside temp. Does that make sense? Since you were in cool water, I would suspect that is also the reason that you felt like your urine was hot.

Have you read any of the information available on this site about the IC Diet? You can find the link to it in my signature below. It will explain how to do an elimination diet, what is usually safe to eat, how to add foods back into your
diet, etc. For me, if I eat or drink something that is a trigger for me, I get that burning feeling in my bladder I described above.

[Briza]

You might take a look at the vulvodynia forum. Vulvodynia and Vulvar Vestibulitis can cause vaginal burning like you describe. But others who have been diagnosed with just IC also report sometimes vaginal burning as one of their symptoms. I have all three of these condtions:IC, VV, and Vulvondynia.

[SandraCT]

Thanks to everyone who replied to my post. I've had IC for many years but I never quite understood if what I was feeling was the same type of "pain" as others would speak of. It sure sounds like it is. Lately I have more problems because of mixed incontinence so I literally feel like everything is hanging on the ground. It's awful. I've been in a "flare" for a long time now and as you all know, it's not pleasant. The constant feeling like I have to go and the burning and yet nothing much comes out. I have my period now and it seems to make it worse for me. I am going to check out the IC diet. Again I thank you all and hope that you have many "good" days....
Sandy

[Kirstiexanne]

I have the exact same pain as you. I have been diagnosed for about 3 years now with IC. My pain is horrible burning in the vaginal area about 60-70 percent of my day. It happens a lot when I use the bathroom but comes other times as well. I don't have to go to the bathroom more then 5 times a day but I am always "burning". There are times when I go pee and it feels like it is scolding hot. I don't know why this happens but I do know how you feel. I have always felt as though I have different sympotms than regular IC patients but I pretty much have the exact pain you are describing. I hope you are doing better and your pain is not constant.

[SandraCT]

The burning is really a pain (literally)!! I feel for you. I think it's from the constant peeing but yet also retention in my case. I have other things besides IC going on which cause both problems. I have already gone 9 times and I'm sure I'll go another 10 times. But I took a Pyridium and it has calmed me down. You may need to take something that will lessen the pain. I know it's so hard to do anything when you have that constant burning. Best wishes...

[ngazerro]

My IC used to be a constant pain. Sometimes just a dull ache, other times sharp "hold your breathe pain". I had a lot of lower back pain and kidney area pain. Some burning, but more of a deep stabbing pain. I could not sit/stand or exercise without pain. I was conditioned to believe it was caused by a cyst on my ovaries for years, until they took them out and later I was dxed with IC. It felt like I was peeing sand sometimes. I now believe it started around 24. I had a partial Hysterectomy then. Later at 36 had ovaries out. I believe my IC got worse then because I finally had no more parts to blame for my pain. I am glad I had my boys early in life!!

[lizzie2994]

Your not alone, i feel burning everday, somedays worse then others. I cant even remember when it didnt burn. I feel your pain =(

[MINNIEB]

A Lot Of Times U Feel The Burning Uti Feeling Even If You Dont Have One. All Pain Is Different. For Me, I Have Constant Sharp Pain, Especially With The Oh So Fun, Bladder Spasms. Certain Food Mostly Acidic And Caffiene Tend To Give U More The Sharp Shooting Pain Or It Just Hightens The Overall Pain That U R Feeling. I Also Hurt Around By Back Or Kidney Area. Unfortunately, The Burning Feeling And The Pain With A Full Bladder And The Bladder Infection Feeling Are All Part Of The Disease. Your Body Will Get Used To It And You Will Find New Ways To Still Function With Your Pain. Talk With Your Urologist About Some Meds To Take. Prelief Is An Over The Counter Pill That Is Very Safe. Take It With Foods-mostly Highly Acidic, Caffiene...if You Cant Avoid Certain Foods. You Will Find Some Foods You Just Cant Eat At Ball, But You Will Finds Foods That Work With You That U Might Like. Try New Things You May Surprise Yourself. U Can Ask Your Urologist About The Prelief. He Will Give Samples And Usually A List Of Foods To Avoid. Its Worth Trying. Also, Ask Him About An Antibiotic To Take Everyday For 3 Months. Even Though Half The Time It Isnt A Uti- It Seems To Help. Also Pyridium. It Can Be A Godsent. Stay Strong And Positive

[elamar]

My main symptom is also burning bladder and urethra. I have recently started using cantharis which is a natural supplement. You can find it a whole foods and it only cost around 6 bucks. You take five tiny pills three times a day and it has really helped reduce the burning. I found a place that sells it on line even cheaper so I have placed an order for 12 tubes. You may want to check with your doctor first to make sure it doesn't interfere with other meds you may be taking. I just wanted to pass this along because it's a pretty cheap med overall and it is producing great results. good luck to you.