IC, Healthcare Ignorance

[Dreamlove15]

I have been in so much pain tese past few weeks, I don't know how anything else feels. I thought this hydro/cysto would help, but I'm not so sure anymore. Afterwards I was in more pain than ever. This past sunday I was admitted to the hospital because I had a severe UTI and needed Iv antobiotics fast. The doctor seemed to know little about IC and pretty much told me what I already knew...can't promise miracles for my pain, as I already know. I was discharged the next afternoon and given antibiotics and stronger pain meds. I was told to come back in 2 days if I wasn't better. So yesterday, I was in such horrible pain and my back and kidneys were killing me. So i decided to go back to the ER again. I get there, sign the paperwork and was called into the triage. This is where my saga begins. I go in there, barely able to walk because of the pain, I have a fever, chills, pressure...it was horrible. The lady tells me to sit in the chair and asked what brought me in. I start telling her and then i felt dizzy. So I looked at my mom to tell her and the nurse rudely says "NO I don't want to hear from you, I want her to tell me ok?" I was like thinking wow, ok...So im sitting there in so much pain and telling her that I have a post op surgery infection and that I have a UTI and that my kidney, back are bothering me...im in pain etc.. And she goes," were you diagnosed with a UTI?" Im like UM yes thats why im back. She then says do you have any health problems and I said I have IC. She looks at me rudely as if I was making up some random disease and says "what is that?" I tried to explain and she cut me off. She then says wheres your pain? I pointed to my abdomen. She rudey shouts at me "thats not your kidneys, do you even know where they are because thats your abdomen. I looked right at her and said YOU DONT HAVE TO BE RUDE!. she then says go sit out there and we'll get to you. I was so ****** by then. UGH...so my mom and I are sitting there for like an hour and a half and notice they are calling people to the back who came hours after us. So my mom gets up and ask the lady who was with the other rude lady how long is it going to be because by then i was shaking from pain. The rude lady says" we dont know go sit down." the other lady says im next. well lets just say they kept calling people who came in after me...I just started crying...another hour passed and i got up and asked the same rude lady did they forget about me because i am feeling SOOOO sick...she looks at me and says can we get you a barf bag or how about a wheelchair? I was like um no, I just want to know how long...and I know they were doing it on purpose because they werent even that busy. So finally after 3 and half hours im called to the back, by then im sobbing and so angry. I get put in a room...and sit for another hour or so before the nurse guy somes in and asks whats wrong, I tell him how I was coming back because usnday I was admitted to the hospital for a severe infection and that im not better and that i have IC...he looks at me and says what is ic? so once again...IC is just two letters that confuse people...then i get blood drawn and set up with an IV tube.. Another hour passes...still no doctor...im sitting there biting me teeth in pain...WOW was it bad by then...but i was afraid to ask for anything because i didnt want them to think im a drug seeker or something...another hour a med student comes in looks at me and seems to be out of it... listens to my heart???? um ok...im not having a heartattack buddy...i have a really bad infection and im in pain...has no idea what IC is or anything about my history...blah blah...picks up my urine sample and leaves...then my nurse guy comes back in and gets me an IV and then hes about to leave and im like im pain...the nurse goes Oh...UM hello you asked me to rate my $$$$$$$$$ pain from a 1-10 I said 10 and your acting like im not in pain...grrrr...and my mom looks at him and goes...Um why are we here? im so out of it by now....right then and there i wanted to just kill over....so he says oh ill get you something for that. Im like ok, im thinking to myself AFTER 3 hours of this that would be nice. So 30 minutes later he coems back with some fengrin and morphine, which I had a allergic reaction to the first time on sunday...but they assured me that it was probably pused too fast and that they would do it slow. So I get the morphine...with some they dripped all over my arm..niiice. anyways about 15 minutes later the doc comes in. says my infection has gotten a bit better has has no idea why im such pain...and says we'll just give you more antibiotics and send you on your way...so the nurse comes in with the discharge stuff...scripts etc...and all of a sudden my esophogus starts spasming really bad...worse than last time...I could not breathe...i was gasping and the nurse guy is just sitting there watching me...then he slowly walks out and gets another nurse...it was so scary. they come back and tell me to relax...take deep breaths. so after 2 minutes the spasm let up. and they went to get me a cocktail for spasm...some lidocaine/pepsit nasty stuff. I drank it and was released. this experience really upset me more than anything...i felt like an animal...treated like one...and like no one understood me. Why is at a teaching hospital in Oklahoma, the only one that researches in OK has no idea about IC, they look at me like I am crazy. What in the world? I think next time im going to print some info on IC and bring it with me....Ignorant people should not work in healthcare and should not work with people if they have no compassion....

[Katrina]

:grouphug: So very sorry you went through that!!!!

All I can say is that the world won't change without our help. So if your going to the ER about IC pain...you may need to bring some proof that you have IC and what it is with you. Some people won't want to learn but to those that are willing to ...they may end up teaching those that don't someday so it may be more worth it than we realize.

I so hope you get a back up pain med...or a better back up one! :grouphug:

[Briza]

Hi
I had some serious complications after my hydro and a week's hospital stay and a lot of missed work/$$, etc., because of my extended recovery time. Mine was not an infection but severe retention which compromised my intestines and they became paralyzed and I had to have my stomach pumped through my nose. Was it painful? Oh GOD YES....on the 1-10 scale, like 100 for 9 days straight.
I am so sorry that you have had to go thru such poor treatment at the ER. It is not just or fair. I feel your pain and your disappointment and I truly wonder about the competency of some urologists as well as ER doctors and other staff and their willingness to take responsibility and action (the uros) for the complications and severe pain that some of us experience after this procedure.
I am so very sorry that you have had to go through this. I hope that with the antibiotics and pain meds you will get relief very soon and I pray for a fast recovery with no further complications.
I do want to commend you, though, on seeking treatment without delay at the ER, despite the poor treatment you were given. That was an excellent decision on your part, and I know it must have been a difficult one to make and go through.
Best wishes. Please keep us posted on your recovery, and if you feel like you need to be admitted to the hospital again, contact your urologist, no matter the time of day or night, who did the hydro, and that should make admission easier than going through the ER, I would think.
:grouphug:
Bri

[dreamy]

This is why I am so upset. Why do people that are not doctors know more than some that are doctors? It amazes me and scares me that this is happening to women and men. I really hope that this struggle for adequate care with IC stops happening! If we are in the er we obviously need help. What do we have to do to get them to understand our problem is internal you cant tell by the outside. It bothers me that unless your vomiting and passing out then your not in any significant pain. Lots of people look normal walk and talk but have serious things going on. When you are in pain all the time you stop crying and start trying to get on with living through it until whatever it is gets better.

I hope that you dont have to go through that ever again and I hope that IC will be more recognized. It really is bothersome that we have to explain IC to medical providers. Im not sure how to phrase it but what I am trying to say is just because they are not feeling the pain doesnt mean it doesnt exsist. When will they realize? When are these people that are supposed to be providing care going to realize this is a real serious debilitaing issue and we need all the cooperation in the world from everyone. It makes me cry so hard because I was treated like that too the first time I went to the er. It makes me want to print out all I can get on IC go back to that er and shove the papers in their hands and say read it and learn it get educated and I hope this never happens to anyone else that comes in here with IC. No one deserves to go through that.

This treatment has happened to a lot with IC and its got to stop. We need proper care. This shouldnt be taken so lightly to health care providers. When we come to them in pain or discomfort we should have the most understanding. Somehow it seems IC doesnt exsist to people and thats absolutely upsetting. It obviously exsists if this many women and men are suffering with it. I hope you feel better.