The name "painful bladder syndrome"

[LithEruiel]

I've been thinking about this lately. Apparently there's been a push in recent years to call it Painful Bladder Syndrome instead of Interstitial Cystitis. I have a couple of problems with that...#1, not everyone with the disease has pain at all and there are also many people who may have pain, but their main symptom is frequency, not pain. Wouldn't calling it PBS lead to more wrong diagnoses if healthcare providers start getting the impression that you have to have pain to have the disease? I think hypersensitive bladder syndrome is a better name if they're going to change it because that would include pain, frequency, urgency, pressure, etc. #2, Painful Bladder Syndrome doesn't sound like a real disease. We have enough trouble being taken seriously in the medical community without giving it a name like that. At least Interstitial Cystitis sounds like a real thing. Just my opinion...Does anyone else have any thoughts? :idea:

[icnmgrjill]

Couldn't agree with you more!!!!! I've done lots of stories on this in the back issues of our enewsletter!!!

Jill

[LithEruiel]

Do you think there's anything we can do about it Jill?

[baaaby11]

I agree completely. I don't have pain so to label me as someone who has "painful bladder syndrome" wouldn't make much sense.

[LithEruiel]

Same here. If I have pain its in my back or pelvic muscles not my bladder itself...before I was on Elmiron I had bladder pain, but my main problem was always going all the time.

[ICNDonna]

Changing the name has been discussed by some medical professionals, and I have seen references to PBS/IC --- personally I think interstitial cystitis defines it better.

Donna

[LithEruiel]

My doctor said she went to a conference and they said it's not IC anymore it's PBS...of course that may just be the opinion of that speaker.

[VickiB]

I think hypersensitive bladder syndrome is a better name
I agree with you.

While it seems that painful bladder syndrome doesn't really fit, I've never been fond of interstitial cystitis either. I think the 'cystitis' part causes what we deal with to be regarded as just another bladder infection. Like, take some cranberry juice & antibiotics and get over it already!

Vicki

[statesboro]

I never went to the doctor complaining of pain, but I was diagnosed with severe interstitial cystitis. Ok. I do remember the ICA did a survey a while back about whether we wanted to keep the name "interstitial cystitis". (or comfortable with it) Anyway, over half of the people that responded were satisfied with that name. Of course, I even mentioned that I don't have pain and that painful bladder syndrome would not work for me. I do believe I read once that some doctors and specialist overseas, maybe in Europe, have actually wanted the name to be bladder pain syndrome. Oh, well!

[LithEruiel]

I read that too...so it's not just the US screwing it up, lol.

[Snowden1]

I do have bladder pain, but agree that I don't like the name painful bladder syndrome. I also agree that it is a name that is not taken seriously by the medical community. I also don't like the "cystitis" part because many doctors I have seen, believe it or not don't know what interestitial cystitis is. I had one doctor look at me like I was crazy when I went to a walk in clinic. She said, "If you have cystitis you should be able to get rid of it with an antibiotic, I am not seeing infection in your urine." I went in there because I thought I may have a kidney infection.

[LithEruiel]

She said, "If you have cystitis you should be able to get rid of it with an antibiotic, I am not seeing infection in your urine."

Oh how stupid. :rolleyes: All cystitis means is inflammation of the bladder, not inflammation from infection. I would think knowing basic medical terminology would be enough to know that, but I guess not. I know what you mean though...I hope my doctors/nurse practitioner never retire because I don't want to explain this to a new one!!

[TexasHoney]

Somtimes you wonder if the doctors are really even tyring to understand this disease. It's very frustrating.

[Julie B]

I think that we are at least a generation away from 'changing" the name, if that is what happens. I can't even think about going around saying I have "painful bladder syndrome" or PBS. PBS is a television station in most everyone's mind in America at least. I know the docs are trying to get a more targeted definition, and Jill told me in Asia they are calling it hypersensitive bladder syndrome or HBS. If they forced the issue, I would have to go with that.

[carole]

My urologist when she diagnosed me said I had painful bladder symdrome or IC. I said to her is it not the same thing and she said no. However I do realize it is the same thing. Boy the medical community really needs to research this alot more. There are so many of us suffering and so little they can do to help.

[LithEruiel]

That's interesting...so she thought they were different things, but didn't know which one you had or...? And she's a urologist, too...geez.