IC Pain

[Syd]

Everyone talks about the pain of IC in different places and in different degrees. When someone references pain to be in the bladder I have a hard time understanding where exactly they are talking about. Is it above the pubic bone, where the bladder sits? Or is it in the area of where you get the urge to urinate? Or is it in the groin area? Also is the pain sharp or dull, pressure, burning or muscle soreness? I am trying to get a synopsis for those people who are first starting out with IC. Sometimes when you are first dealing with this disease, it is hard to know what to associate with IC and what not to....I thought maybe this would help....I know it will me. Thanks!

[SandyRN]

I can tell you in my experience I can TELL I have a bladder....an organ that you really don't think about unless you have to pee---that is if you're a 'normal' person! I get all over pelvic pain, sometimes from my belly button down to my upper thighs. I get lower back pain because IC pain can radiate to the spine. I get this intense burning in my bladder that's basically right above the pubic hair line. I get urethral pain, but that's not bladder pain, but it is sometimes accompanied by it. To me, sometimes it feels like menstrual cramps, but nowhere near time for my period, others it's like someone poked a blazing hot cattle prod there. :( Also, I get pelvic floor pain that also sometimes radiates from my bladder, and can be exacerbated by pelvic floor dysfunction.

I hope this answers your question. :welcome: to the board!!

Sandy

[SandyRN]

ps...I'm in Charlotte. What part of NC are you in?

[ihurttoo]

Hello! :welcome: to the ICN! Sandy gave you a very good description. Although, it is true that it seems to differ from person to person. For me, I have endometriosis too and have had adhesions many times, as well as fibro, IBS, and IC. Before I had the endo and adhesions cleaned out thru laproscopic surgery, I hurt all over my entire pelvic area. It was very difficult to pinpoint the origin of the pain since it hurt EVERYWHERE! However, after I had the Endo and adhsions cleaned out, now I can tell that the bladder is where my pain originates. Then, if I dont take the pain meds right away, it radiates to my back, sides, and even my thighs.

The pain in my bladder is very much like really bad menstral cramps, or like you feel when you have diarrhea (sp?) and need to go to the bathroom NOW, except instead of that feeling in the colin only, it starts out like that in the bladder and then my sides get really achy from trying to brace my bladder, and I also get low back pain that is a throbbing pain (like a toothache in your back). In my thighs, the pain is a heavy achiness, (kind of like the body aches you get when you have the flu.)

When all of the above starts happening, it sets off the fibro and the IBS too. I think it is different for everyone though. Some people have pain upon urination, but I dont. Some get relief from urination, and for some, it worsens their pain. For some, the pain is in the urethra in addition to/ or instead of the bladder. For others, the pain is in the vagina in additon to the bladder.

Hope these descriptions help you! I always find it so difficult to explain to a Dr or nurse when they ask me to descibe it. It's like how do you describe colors to someone who is blind? OR how do you describe an orgasm to someone who has never had sex? Most of the people we are attempting to explain this to just dont have the ability to understand because they have just never experinaced anything like it, and certainly not all day, every day for years on end! They think it is like when they have a UTI! (And it is for a few, but not everyone!)

Anyway, again, welcome to the ICN! I hope this helps you!

Hugs,
Amy

[dg2901]

I get the hot poker feeling directly where the bladder sits.
Unfortunately IC shows its ugly face in many different disguises so you might experience something totally different than the next person.

take care
diana

[Syd]

Thank you for those that responded. Sandy, my husband is in the Marine Corp and we are stationed at Camp Lejeune. He is in Iraq right now and won't be home until Feb. I have three children, 9, 4 and 2. This IC is such a crazy disease. The reason I ask about the pain is because I have a hard time diferentiating (sp?) between IC pain and "other" pain. My pain is mostly in my lower back but it seems to wrap around to the front. Does anyone else experience this? From those of you that also suffer from back pain does it start in the front or in the back? Mine is in the back and it goes around to my groin area but not really where my bladder sits. Does that mean that eventually I will have the pain there as well? I can't imagine that. I believe I have progressive IC because it has gotten worse over the nine years that I have had it. It doesn't seem to matter what I take, drug wise, I continue to get worsening symptoms or new symptoms all together. It is frustrating because I read about how IC is not progressive for a lot of people and I also read that people who are progressive are able to slow the progression down or stop it all together with the right drugs....I just haven't been this lucky.

Thanks for the welcome. I look forward to getting to know all of you and becoming a supporter myself. Oh and anyone that would like to help out with the kids is more than welcome!!!!!

Sydney

[ICNDonna]

Sometimes back pain can happen with IC, but if it is a "new" symptom, my recommendation would be to talk with your doctor. When we have IC, we have a tendency to blame every symptom on the IC --- and it's entirely possible to have other problems too.

I have compared my IC pain to menstrual cramps, but much more severe. It feels like my body is trying to push my bladder out.

Donna

[aprilmae]

So if we have pain like monthly cramps but we know that that can't be it then is it fair to say it is the IC?