I wish all doctors knew about IC

[Mel53H]

Last weekend I had what I thought was a UTI. I went to Urgent Care at the hospital and of course peed in a cup. Well, since I had already had taken some AZO, they couldn't really test for sure if it was a UTI. The doctor gave me some antibiotics anyway and some pyridium. Well, the next day I was hurting so bad that the pyridium did not even help. I used heat, I used ice, I useed everything to get some releif. I finally ended up taking 2 Vicodin. Well, those did not even help either. I was desperate, so I called the medics. I know that sounds harsh, but I was going nuts!! I felt like my bladder was coming out of me!! The medics took me to the ER.

The ER doctor looked at me like I was a big baby. I told everyone that would listen that I had IC and needed some pain relief. The doctor told me that it takes a few days for the antibiotics to work. DUHHHHH! I told her that I knew that and have had several UTI's and IC. She(the doctor) acted like she did not know what I was talking about. Finally, she gave me some Percoset and sent me home with a prescription for it and a small bottle with about 5 tablets in it. It was about 2:30 AM when I left the ER , so that is why she gave me the small bottle of percoset.

I wish there was a card or something that says, "I have Interstial cystitis and if I am brought into the ER to please give whatever pain releif I need". Sort of like the bathroom card that is sold here. Your own doctor could sign it and the ER could call the doctor on the card with instructions.

These damn ER doctors don't have a clue about IC and they should have a clue. It infuriates me!! They look at you like your nuts!:rant: :cussing: :cussing:

Thanks for listening or reading. I needed to vent.

Mel

[ihurttoo]

I hate it you had to go thru all of that, (the pain and having to deal with ER Drs.!) I know what ya mean, they dont have a clue around here either! I did finally suceed in getting my Dr. to leave standing instructions at the hopsital for me when I am in a bad flare. Unfortunately, it isnt for decent pain meds, but it was for a rescue instill before I was able to do them for myself at home. Fortunately, that usually worked for me, but I dont know if he told them what to give me if I didnt or not.

I totally agree that ER Drs need to learn how to recognize IC and treat a bad flare effectively.

I am so sorry you were treated so callously. That is the thing that makes me the maddest of all. I mean it takes no more time to speak to a patient kindly than it does to speak rudely, and why would anyone want to be nasty to someone who is suffering?

Anyway, I am sorry you had to go thru all that. But, I hope that this flare calms down soon and that if it is an infection, that the antibiotics will kick in soon too.

Sending hugs,
Amy

[ICNDonna]

:grouphug: I hope you feel better very soon.

Donna

[kari1980]

I was wondering, Is there maybe some kind of standard letter that someone could type up regarding IC and what it is and how it affects us and then we could all copy and print it and each of us send it to our nearby ER's? I don't know if it's possible to do this, but I would be on board to do it. I've never gone to the ER yet, but I hate to think if I ever have to that they are going to treat me this way! It's so unfair. Let me know what you think.

Kari

[Mel53H]

Kari,

I was thinking along those lines as well. There has to be someway for the medical profession, especially ER doctors, to be at least aware of the condition. I do not like to be treated like I am a hypochondriac or even a cry baby. I want to be treated just like any other patient that has something wrong with them.:rant:

[ihurttoo]

I was wondering, Is there maybe some kind of standard letter that someone could type up regarding IC and what it is and how it affects us and then we could all copy and print it and each of us send it to our nearby ER's? I don't know if it's possible to do this, but I would be on board to do it. I've never gone to the ER yet, but I hate to think if I ever have to that they are going to treat me this way! It's so unfair. Let me know what you think.

Kari

I actually found a great article about IC on the Urology Today site last nite. It talks about it and then under "Treatments" it has all the usual stuff and then says that when we are in a flare that strong narcotics are warrented and if we are already on them, that stronger doseages need to be adminsitered during our flares. I would post the link here, but I am not a very good "linker". But, there are also lots of great articles, lectures, and transcripts on the main page of the ICN that might work.

Just thinking out loud here, but maybe if we sent something attention getting along with the letter like Minute Rice, Instant Potatoes, instant pudding, instant glue, pkgs of Instant soup, Instant oatmeal etc. and a few other inexpensive products that have the words "minute" or "instant" on them, and then say something long the lines of, "Perhaps by using these products you will find a few minutes to read the newest information about the pain caused by Interstitial Cystitis." :)

I dont know...it is probobly corny, but I was just thinking that it might make the letters (or information packets) stand out. I was also thinking that a gift basket with that stuff in it would be big, and a definate attn getter and a conversation starter. I mean, everyone that walked past it would want to know why someone would send someone that stuff! :lmao:

Or maybe we could get a graphic designer to design a photo of a rat that has chewed out it's bladder to attach to the story that Dr. Brookoff wrote about the rat they injected with something to give it IC. The rat proceeded to try to chew out it's own bladder. Then, maybe we could say something like "Was your patient the rat in pain today, or were you the rat that wouldnt treat the pain?" :lmao:

Whatever it is, we need to keep our target in mind and that due to the nature of their jobs (and personalities), they like things succinct. (That rules me out for writing anything! LOL!) If we want them to read it, it needs to be concise and direct. If we want to give them detailed info, I think it needs to be separate from the cover letter, and that the cover letter needs to contain the key points we want to get across...IC is a painful condition that can be as painful as anything else they see in the course of a day and it deserves the same treatment....pain meds.

Another thought, under all the Regions there are of the boards here, we could do a state by state list of the ERs and have people in each city volunteer to send (or deliver) the letter and/or information packets to their local ERs. Then, have them post when it was completed. That way, if someone hasnt covered an ER yet, it would be easy to identify it and someone else could get that one.

It would also be great to get a count from Human Resources at each hospital to find out the number of Drs. and nurses ahead of time so that each one gets a copy/packet. I mean it wouldnt do much good to just the unit secretary open the letter and toss it in the garbage! And though it might help even if one Dr. or nurse read it, it would be a whole lot better for all of them to read it. After all, I doubt that even if one read it, he/she would take the time (in a busy ER) to educate the other staff members about what he/she just read. Nor do I think they would take the time to make the copies and distribute them. That's why I think Human Resources (or the Administrator, or whoever) needs to be involved so that we can get the contact names and send the correspondance addressed personally to each individual.

Maybe the patient advocate at the local hopsital would be a good contact person who could put us in touch with the correct people to help.

Also, we need to contact whoever is in charge of coordinating the continuing education classes at the hosptials and send a pack to that person, stressing how IC is freq misdiagnosed and how pain meds are appropriate for IC flares.

I am sure that with as many members as we have here, someone can think of something better. But, you are right...we definately need to move on this. Far too many of us have had similar ER experiances. We need to have the ER educated before we arrive in pain!

[LeeAnn]

http://www.ichelp.org/painissues/ICAndPainPartOne.html

There is a great article on the ichelp.org site. I don't know if the above lind will work but go to ichelp.org, then to "pain issues", then to "IC and Pain: Part One in a Four Part Series."

It explains how terrible IC feels and discusses pain tx options such as percocet, vicodin, morphine, etc. This might be a good article to print off and take with you.

I feel your frustration! A couple years ago I had angioplasty (where they thread this thing up an artery starting in your groin and they put a stint into an artery near my kidney). And I was only 26 at the time! Lol. Anyway, when I went into the hospital I knew I would have to lay in a bed completely flat for 6 hours so I wouldn't bleed out. I had a LOT of anxiety about not having the freedom to jump up and go potty. So when I went to the PACU (post anesthesia care unit) I told the RN, look I have this thing called IC it causes a lot of bladder pain and sometimes I gotta go every 15 minutes, I know you're busy....but please help me.

I was SO MAD b/c she totally ignored me and treated me like I was a big baby.

Luckily for me my husband is an RN at the same hospital but he works in the ICU. I called him from my bed and he came down immediately and helped me with the bed pan so I could go.

If something like this happened today I would just pee the bed. There is no reason I should have to suffer like that. I know that sounds gross but I'd rather do that than lay there in agony.

But in the future I am going to walk in armed with information and if they ignore me I'll probably be more assertive than I was the last time.

[kari1980]

You have some great ideas Amy, I love the rat idea! :) I'm sure between all of us putting our heads together we can come up with something to try and help solve this problem. I agree with you that we should reach out to the individual doctors rather then just send the letter to the ER hoping that it gets to the appropriate people. I don't know who is in "charge" of the ICN and these boards but maybe they could give us their input on how to handle this?
Thanks,
Kari

[littlemyrn]

I think printing that post by Dr. Brookoff regarding the pain, and taking it with you is a great idea. I don't know if they would listen or even read, but it is worth a try. I know I was in a terrible flare last week and I thought about going to er to get something for pain in an iv, but, after reading so many post able the drs. in er, I thought why???That is a shame that we are reduced to suffer because the doctors are not taught enough about IC. I am thinking of contact the Chief of Staff at our local hospital, which I believe is a URO, to discuss with him about educating the ER doctors on IC. Printing out the ichelp.org pain info, and such. Maybe if all of us would do that at the local area, that would help. Being logical, not a pain day, and being an educated patient, maybe they would listen. I know my URO in nashville has 200 IC patients, and someone from her office is always on call, but she is the IC person, so who knows what I would get if she wasn't the one on call, plus her hospital is 35 min. away, and my local er is 10 min. ?????We are smart and I know we can all put our heads together to make a stand.

[kari1980]

I agree with you Leann, we have to start becoming more assertive about our care and needs. I know when your younger it's much harder being assertive and your embarrassed, that's how I always felt, but now that I'm older I have no qualms about being assertive. I finally realize now that no one is going to care more about me then ME, and that I have to be my own advocate and sometimes that's really hard but we have no choice.

LIttlemyrn, I think that's a good idea going to your local hospital and speaking to the Chief of Staff. I would commend you for doing that. I don't feel confident enough yet to tackle that one on one, but would definitely be on board to sending information to the ER if we could come up with a good plan of action, you know? We definitely have lots of really intelligent people on these boards and I'm sure somehow we could come up with a great plan. I don't know what that is exactly, but would definitely be willing to help out anyway I can. I would love to get the word out to these hospitals and doctors, especially about being more compassionate towards us. I'm going to make an appt with my doctor and bring him the article Leann linked me to about pain management, because last time I called him for pain meds he didn't give it to me, and see how that goes. Maybe if it goes well it will give me more confidence to tackle the ER doctors!! Thanks for everyone's input here.

Wishing all of you a pain free day.

Kari- OH and Happy Easter!!

[jen74]

I am sorry you has to deal with that experience. I will NEVER go to the ER unless I am dying. They are only good for life threatening emergencies it seems. You have to remember, the ER docs are usually only interns you see. They will usually have one head doctor on the floor in the ER that all the interns go to if they need help.

Also, I find it better if you have someone with you like your husband or a family member. For some odd reason, then you are treated more decent and not like a hypochondriac. It is sad, but a true fact that women are usually always treated like lunatics when we complain of pain. The reason is, lets face it, men dont usually experience half the pain that we do in life( meaning they have never given birth or went through labor), so the normal healthy guy has no clue as to what real pain is, other than the minor things. Also, it is a known fact that women will tolerate alot more pain before running for help, and maybe this is because we have a higher tolerance for pain as it is.
If you are lucky and get a women doctor on call in the ER, sometimes it is better, but not always. I really think it should be made a reqiurement that all doctors have to have a good bedside manner as this is a very important part of being a good doctor. Also, if you go to the ER and the doctor does not have a clue on what IC is, then he or she needs to get on the computer and look it up.
Again, I am sorry you went through all that. I hope you are feeling better.
Jen

[kadi]

This is a really frustrating issue. One time I was at my local urologist's office for an instillation & he came in with tears in his eyes, apologizing for my long wait. I asked him what was wrong & he told me that he'd been on the phone, trying to advocate for his patient who had IC & was in the ER & that the ER doctor wouldn't listen to HIM.

[ihurttoo]

This is a really frustrating issue. One time I was at my local urologist's office for an instillation & he came in with tears in his eyes, apologizing for my long wait. I asked him what was wrong & he told me that he'd been on the phone, trying to advocate for his patient who had IC & was in the ER & that the ER doctor wouldn't listen to HIM.

That is a horrifying thought! I mean, if they wont listen to another Dr, (a URO at that!), then who would get their attn?!! But, it is comforting to know that at least one Uro out there gets it.

[kari1980]

Gosh Kadi, that's a really scarey thought that if the ER doctor wouldn't even listen to another Dr., aUro at that, then what chance do we have getting them to listen!! Well we still can't give up, :tsk: we have to find a way...

Kari

[lnseagraves]

Sometimes when hear of these horror stories I wonder if it WOULD be better to officially call IC "Painful bladder syndrome" or something. In my experience, doctors sometimes just hear the word "cystitis" and seem to ignore the "interstitial" and then treat me like an overreacting UTI patient when thats not at all when I'm referring to. Lately, I've started saying "painful bladder syndrome" instead and I've gotten a lot more sympathetic looks etc. than I ever did saying "interstitial cystitis".... just a thought.

[Mel53H]

You are right, Inseagraves. I have noticed that too! Maybe I will do that next time.

[sleepyangel30]

i wish all doctors knew about ic too... i emailed my family doc a week ago i sent him info about ic etc.. i have been telling people about ic i just want everyone to be aware ya know.

[ICNDonna]

The practice of emergency medicine is a specialty that requires specific training. I know because I was involved in reviewing applications for ER physician openings at the hospital where I spent 25 years of my life. Some hospitals will have interns in their ERs, but their work is carefully reviewed by qualified physicians.

Not every ER in every small town has an emergency physician; some just have local physicians who cover the ERs on a rotating basis, but if you live in a large city and go to an ER, you will in most cases receive skilled care.

I also recognize that not every ER physician is familiar with IC, but most are.

Donna

[kari1980]

I agree with you Donna, I worked in an ER for eight years and the doctors there were not Interns. They were specially trained as ER doctors. I personally think that because they are trained ER doctors they are more qualified in treating life and death emergency situations, not the basic (to them anyway) "bladder problem". And because the individual Emergency Rooms' probably don't treat a whole lot of IC patients they aren't all that aware or sympathetic to it, you know?

Inseagraves, I always refer to IC as a Painful Bladder "Disease". to me that sounds better then Syndrome. I don't know why but usually when I hear the word Syndrome, I think of something that everyone else thinks is in your head, so I say Disease, that may help you.

Kari

[ihurttoo]

I agree about the word "syndrome" sounding like some unexplained phenomenon that could be "in your head". Many other diseases that are not well understood (and have also been frequently viewed as hysterical women's diseases) are also frequently called syndromes, like "premenstral syndrome" or "fibromyalgia syndrome"or even "Stockholm Syndrome". Maybe it's just me, but I feel the word "syndrome" lacks credibuilty. But, maybe it is just me!

I was talking to my Mom yesterday about all of this. She is disabled now, but worked in the ER for several years as a CRN. She worked triage for alot of that time. I asked her what she thought would be the best way to get ER Drs and nurses informed about IC and to establish an emergency protocol like they have when you go in with a suspected kidney stone, chest pain, or whatever. She said that all hosptials have mandatory continuing education classes and inservices to learn about new advancements, new diseases, etc. She said that since in Medical and Nursing School that "Campbell's Urology" was basically the Bible for Urology, that was the book that most would have studied for all things urological. She said that the problem is that until recent years, IC was described there as "A hysterical women's disease" and was primarily thought to be a psychosomatic issue. So, anyone who went to med school until the description was changed there, would be operating under that assumption. SCARY!!!

So, she said that the best way to change their mindset would be to contact the Education office at the local hopstials and talk to the Continuing Education Coordinator and tell him/her about the old textbooks and what they said and tell them about the new advances and follow up by sending them materials on IC. Ask them to inform the Drs. and nurses during a continuing education class or inservice about IC.

She said if we mailed stuff to the ERs that it would more than likely never be read b/c they just plain dont have that kind of time there. And that even if it were read by one person, it certainly wouldnt be passed on, to all on that shift and the following shifts. So, she said it wouldnt accomplish much, if anything. She said that getting the Education Dept on board was critical to the success of our mission.

She went on to say that since so many of us have had vastly different treatment (even from the same Drs at the same hosptials), that there was obviously no established protocol at hosptials for what to do with an IC patient in a flare. She said that different specialists have basic instructions for what to do with patients with various symptoms when they are in the ER. For example, when someone comes in with chest pain, they do the EKG, and other tests, and put in an IV, etc. and there is a set of procedures they follow. Same for most other illnesses/diseases. But, with IC, there is not any set of procedures, which accounts for the lack of any standard of care for IC patients. She said the local Uros are responsible for establishing the protocol for the standards of care and that we need to contact the Uros and explain the problem to them and have them call the Education Coordinator to hold an inservice at each hosptial to bring them up to speed on IC and instruct them on what to do for IC patients.

It made sense to me! Hopefully, our nurses on here will weigh in and correct me if I explained that wrong. But, I think our nurses will have the best ideas about how to get the information out to the medical profession...after all, they know how they here about new medical advances at work, and things like that.

Thoughts?

[Curly]

I am one of those who live in a small town where the ER doctors are the local family doctors who do not know about IC. I have only went twice to the ER for my IC because I was in tremoundous pain and needed relief. Both times the ER doctor acted like I was crazy. The 2nd one wouldn't even give me any medicine. She told me I needed to wait until morning and call my uro. Which I did and she gave me pain meds and nauseau meds so I shouldn't have to go back to my local ER. They really are cold and uncaring.

[kari1980]

Yes, that's why we need to somehow get the word out to these ER's. I think Amy's idea about the education dept is a really good one. We just have to figure out HOW? I agree Amy with what your Mom said, I think she has some really good ideas. We need to somehow figure out how to get some kind of packet together to accomplish this. Any suggestions?

Kari

[DaniBelle]

if we all wrote to someone who is VERY high-profile like Oprah. I wrote to "The Oprah Winfrey Show" last week, describing I.C. and the fact that there is an inexcusable lack of education about women who suffer with I.C. and its related conditions among the medical community. I asked if she would strongly consider doing a show to promote awareness about this disease. I don't really watch the Oprah show much, but I DO know that if she discusses something and brings it to the public....they WILL listen. If anyone is interested, please go to her website and write a heartfelt, to the point letter asking her to do a show about I.C.! With education, comes awareness, with awareness, comes CHANGE!!!!

Dani

[kari1980]

Dani,
I agree with you! I just wrote a letter to Oprah myself and maybe if we all bombard the show with letters they will take notice. I think this is the link if anyone else would like to write also. http://www2.oprah.com/email/reach/email_showideas.jhtml.............You may need to cut and paste it. I also asked them to come to this website to read about it and all the posts from all of us woman desperate to get the word out. It doesn't hurt to try right?

Kari

[kari1980]

Ok, I just tried the link I posted and it didn't work, so just go to Oprah.com and then click on where it says contact us on the left, and then click on where it says, do you have a new show idea. Hopefully that helps.
Sorry.

[jen74]

It is true, whenever I tell someone( even some doctors) that I have IC, they right away say, Oh, you mean a UTI. It gets a little old after awhile trying to continually explain myself or the disease and in the end they still dont get it.
Jen

[skrix]

Littlemyrn,

I was wondering if you could PM me the name of your urologist in Nashville. I have a urologist in Nashville, but he is not up on IC and I live close enough that I would love to be able to find one there. Thanks for your help.

[sweettabby]

I always hated going to the ER for a bad flare. But, I did find one doctor that seemed to know. He was great. He gave me what I needed. Wish more were up on it though. :help:

[evanseri]

I had a general practice doctor (who was the worst and most rude doctor I have ever been too:cussing: ) tell me that IC is not a life long condition. He had asked me how long I had been on Elmiron (which he mispronounced) and how long I intended on taking it. I said that I had been on it a year and that I may stay on it life long. He looked at me like I was a drug addict and said arrogantly that staying on Elmiron life long is not necessary because IC is not a life long condition. I said "yes it is" and he again arrogantly said "no its not". It was at this point that I got ticked and I said "Yes it is, I think I know my own disease, I have had it for ten years. And don't you think my urologist who prescribed the Elmiron knows what he is doing". It really made me realize how little most medical professionals know about our disease. That really sucks, and it reminded me of ten years ago when I found myself going from doctor to doctor just trying to get a diagnosis for my pain. Well sorry to vent but this doctor really ticked me off. Better luck to all of you.
:) Erin