Scared and alone

[Flaherty344]

I wanted to thank everyone on this site for there support but once again I am in need of help I have been having the WORST flare up ever in years the lortab isnt helping, my uro told me to go to the ER I hate going there no one understands IC and act like am seeking drugs, my doc finally agreed to put me to sleep for my hydro but cant do it til Jan 23. I cant wait that long I am in so much pain I just want to lay in bed and cry going to the ER is useless most of the time they treat me like crap like IC isnt real. Any advice?? I have an appointment with another uro on Monday to see if he will fit me in sooner. Any words or advice or prayers will help. I hope I can make it til Monday with the ER but I cant feel like this anymore!!
HELP ME!!
Cathy:angel:
:hi:

[donnadb40]

Cathy,
Of course I can't do anything to ease your pain, but I want you to know that you are not alone and most of us know exactly how you feel!!! I don't have any suggestions that you probably haven't already tried but try not to get too stressed!!! It definitely worsens your pain. I tried Lortab too and it makes my pain so much worse. It seems to make me tense up my muscles to the extreme and actually causes me more pain; however, I am now using Darvocet (which I know is MUCH weaker than Lortab) and lo and behold, it is helping.. Not complete pain relief but better than none. Maybe you could ask your doc to give you a few darvocet to try instead of the hydrocodone.. I know it sounds weird, but so far, it is helping me so much more than the hydrocodone. Also, the heating pad doesn't do much for me but a hot bath works wonders so try that too. Hope you feel better soon and get the relief that you need!

Hugs,
Donna

[Dreamlove15]

I can relate to not wanting to go to the ER. NO ONE here in Oklahoma city seems to know what IC is. They look at me like im making it up and am some pain killer addict. If only they knew I hate taking medicine...My suggestion is to bring in some pamphlets with you about IC if you go to the ER. Thats my plan of action if I have to go back to the ER where I was treated like dirt. I would try to relax and maybe take a hot bath. Put in a good movie to get your mind off the pain, I know its hard but its worth a try. Or try a heating pad. I hope you get to feeling better soon. If you decide to go to the ER, teach them a lesson in IC. good luck.

[GriffsMommy]

I'm so sorry you're in so much pain. Is it possible you can call your GP or your uro and they can prescribe you something stronger than the lortab until you get in with the pain clinic? My GP was willing to give me vicoden and they do help with the pain.
If you do have to go to the ER I like Dreamlove's idea of taking IC info with you. I would also take a family member or friend that has seen how much pain you have been in with you. If you have someone else that can say, I've seen her in horrible pain, it seems to help them to not think you're a drug seeker. I know this is horrible that you have to do this, but at this point if it's going to get you some help with your pain, do what you gotta do.
I hope you get some much needed relief soon. :grouphug:

[ICNDonna]

If you go to ER, you can ask that they telephone your doctor about treatment.

Donna

[bigred]

If you need the OR go. It is now Monday and I hope you get some relief. It's no fun hang in there. If you have to really be voicetress as to how you feel.

[ABliske]

Poor thing, just hang in there. I've felt that way many times. You are not alone. So many of us here understand where you are coming from. I hope you get relief soon!!!!

[RAS6]

Cathy, first of all welcome and sending ((((((hugs))))))your way.
I am so sorry you are going through this pain with no relief or help from those who should be helping you. I felt very similar back when I first was diagnosed. I was in so much pain I cried all day and couldn't sleep at night, yet my Doctor told me he wouldn't give me any more pain killers (after giving me Ultram and Vicadin for two months) and basically said it was in my head!!
I didn't dare go to the ER b/c he was THE ONLY Urologist at our hospital!! Go figure!!
So I saw my GP. I was armed with IC printouts, but she actually knew the disease. She put me on Elavil (helped at the time) and gave me two bottles of Vicadin until I could get in to see a different Urologist. I don't know if that is an option for you, but that helped me. I thought I was losing my mind back then!!
I get so angry when people with IC get treated like drug addicts!! I wish Uro's would take the 2 hours to read Doctor Moldwin's book. I learned so much and was able to learn not to fear drugs, yet to take them properly and be responsible. I think his advise would serve so many Physicians well.
Hang in there until your Hydro. I am praying it will bring you relief. I am having my second Hydro right after you, so we will be healing right around the same time. PM me anytime if you want to talk, OK?

[lisabar36]

I am so sorry you are in so much pain, if you go to the ER I would do as everyone else said, take info with you on IC and see if they can call your doctor. I am not sure what meds you are on currently if any for IC. It wasn't until I started my meds in September that I actually started to feel better and can sleep through the night. Good luck, Lisa

[Dreamlove15]

I hate how ER's look at people with IC with puzzled faces and like were crazy. I hate how they look at IC patients as if were drug seekers. Just remember if you decide to go to the ER come prepared with HUGE IC printouts. It will help UNEDUCATED healthcare workers. good luck and I hope you get to feeling better.:angel:

[dreamy]

Hey you are not alone! We are here for you and I know what you are saying about the er. I would tell them to call your urologist about everything. That way they will treat you right. This is a real issue. Why dont they know that? Why should this be treated differently than any other health issue. Its rediculous. Why do we know that but a medical facility doesnt? They should know how to be able to treat a person with IC. You could also ask for a urologist on staff maybe that will help too.

I hope that you feel better.

[muxerr012]

Cathy, I so sorry for your pain and frustration right now!! I recently went thru the worst flare I have ever had and I believe it was because I ran out of my allegra antihistimine. I didn't realize how bad histimines can affect our IC. Are you on an antihistimine my dear? I pass this along to you because it made such a big difference in my IC symptoms and pain. I was hoping this might help you too. There is alot of info on this site about allergy meds if you haven't alredy seen it. I hope you feel relief and soon! Be well and take care.

[Zygala87]

Well it's about time we strighten out most of the ER's. I always dress very well (hard to do when in pain) and fix my hair. When I go to the ER and speak to the first person, usually a nurse, I tell her right up front "do NOT mistake me for a person seeking pain pills. I am in terrible pain or I sure would not be here. Here is a page from a book that will explain what IC is." I look them in the eyes and take no implication from them that I am a person seeking durgs only. I stay polite but strong. I tell them the Doctor's names that are caring for me. I tell them I understand they deal with people seeking pain pills because they are hooked but I am NOT one of them. I need relief immediately as the pain is diluting my strength and soul and I can not get in to my Doctor for some time. I'm blessed to have a great Husband and He is always with me. If you don't have one, take your Mom or Sister, some family member. It helps a lot. Why should we be afraid of Nurses & Doctors. If they can not understand they should get to heck out of the ER and work some place else. I'm sick of their crap. We must stand up to them with positive thinking. They are not all bad but the less than understanding ones do stick out. Ziggy

[RAS6]

Cathy, just wondered how you were doing this week. I noticed you hadn't responded and I was thinking about you.
Let us know how things are going if you get the chance....
:)

[dverba]

Ziggy,
That is great advise. I actually had a dr once tell me I could not be in to much pain because I passed the lip stick test. He says if a women feels up to putting on make up she is feeling better. What an ***! For that reason I do not wear make up to dr appointments.

[Claredale]

My doctor has told me on a number of occasions, but I have been going to him for some time and then to a doctor he knows well before him. He is adament that I don't go to the ER, but he has noted on my file that if I call in it's okay to call in my pain meds. Luckily Lortab does the job for me. I have gone to the ER 2 times due to IC pain. Once in an ambulance and I must say that was a great way to get the help I needed. The EMT actually checked my arms for track marks, even in pain (I was on the floor crying in the airport and the ambulance had to drive up to the gate to get me). I knew what he was doing. When I told him I had IC, the other EMT had someone in his family that had IC and he immediately called into the hospital to give me morphine. When I got to the ER, it was late at night on a Saturday night, and mostly interns around. I gave them my doctor's name and told my doctor that I had IC and was in a flare. I actually saw him go to the computer and look it up. By the time they had given me my 2nd dose of Morphine and a B & O supp (first one ever...ahhhh). The other EMT came in after another run and apologized to me.

[Zygala87]

Hello DeAnna, that is funny. I would have told that Doctor since I felt I was dying from the pain I am in, I thought I should get myself ready for the funeral and save the mortician some work. IC has taken much from me but not my dignity yet. Well maybe it would as I'd like to stick my lipstick into that Doctor where the sun don't shine. They need to walk a mile in our shoes. "You may not be acquainted with IC now Doctor but if you want to research it, go to your computer and you will become well informed" Whatever works for you DeAnna is all that is important. I Pray you need not to end up in an ER but if you must may you be treated with care you deserve! Hugs, Ziggy

[JlGirl76]

Cathy,
I am so sorry to hear you are in pain. I was reading your post, and it reminds me of myself. You are not alone, and you will hear that alot on this website. My first URO was not very IC friendly, and nor was my second or third. In fact, one URO wouldn't even treat me since I had IC. I have always wanted to post his name on "non friendly IC Urologists" or something. Anyway, I have went to the ER for my IC before. The first time, I didnt' know I had IC, and the doctors acted like I had a STD and tested me and then made me have a ultrasound for a cyst on my ovaries. Nice.....my second trip to the ER, the doctor told me I couldn't have IC, since I looked too good? Or...you don't look that sick? Amazing how you read these titles on books for IC patients. I now have a IC "Med Alert" card and I have my new IC friendly URO on my cell phone. So if I go into the ER, I tell them...call him and I can quote my IC. Who in their right mind would want to make this up for drugs? I mean, I would rather be catheterized with a bladder analgesic to stop the pain - if that's what it takes. Anyway, know yoiu are not alone. And if you are in a lot of pain, I would hope a ER doctor would give you meds or your regular doctors. Some Uro's don't give out pain meds for IC patients, which I think is total crap if you are in a bad flare. And if you are flaring all the time, and need them....maybe the URO needs to change your treatment.
I have my second Hydro with a my new URO in two weeks. I am nervous, my first one hurt afterward. It maybe because the URO didn't use a rescue instillation afteward. I hear they help and stop the inflammation from distending the bladder. I know he didn't and I felt I had to pee and had bladder spasms that were just awful. I told this to my new URO and he acted like that wouldnt happen with putting lidocaine or marcaine in my bladder. Keep that in mind, I really hope it helps.....Best of luck to you....also, buy some heating pads. For me, they work wonders. You just never know what is going to work for you until you try it. :angel:

Best Wishes,
Jen