In pain

[ChristineW]

OK...I really feel like the drs do not care out there. I went for my 2nd bladder instil tday...sodium bicarb, lidocaine and heprin. Im on emirol. Ive aksed for pain relief..Ive gotten: Ultracet (dont work)..Trodol ( dont work) and they will NOT give me anymore! I went today and asked, I said PLZ HELP ME, I CANT SUFFER LIKE THIS...they say sorry we cant do anymore. SO..I went to MD immed after the instil...asked for him to help..he gave me a NON PAIN KILLER and thats NOT gonna cut it. Ive had pain for years now...I told the drs Im a level headed person who will not take things to "pass out" as I have children BUT I do need something for relief and cant suffer this way.
I called pain mgmt today and made appt...cant see them til May 5th..so meanwhie...I go to my treatments ..so far they havent helped, but only had 2 of the 6....and the MD basically handed me this med and turned his back (NOT EVEN TO SAY FEEL BETTER!!!!) and then the urologist says.."If you want stronger I suggest you see your MD)....so tell me..whats a person to do who is suffering, I really want to know.
Its unbelievable.

Thanks all....:(
Christine

[HillaryD]

Christine,
Dr's can be so frustrating! :headbang: They all think that everyone abuses their drugs, which is true for some people, but NOT everyone. :mad: If I were you, I would find 2 new Dr's: a Urologist and a MD. There are many Dr's that think that IC is not that serious and that the pain is all in our heads, and we all know that isn't the truth, we are not :loco:. I would find these new Dr's and ask them if they can give you Percocet, or something like that, because you are right, the drugs they gave you don't help. I don't know anyone that Toradol has helped, it didn't even touch on my pain. Maybe try and take a bath, you know now that you don't have an infection, so a bath might do you some good, just don't put anything in it except mayye Aveno or baking soda. I am wishing you luck and hope that you feel better! :kiss:

[Dixiefireball]

hon please know you have rights for pain mangement i do understand doctor are afraid of getting people hooked on them but when you live with ic sometimes you need pain medicine. i have a pain contract my doctor is great even tho at one time he didn't know what to do with me i didn't know what i was going to do either but he does understand ic is very painful.
if they could just live one day in our shoes when we was flareing they would think twise i'm going to paste this for you so you know you do have rights to have you pain treated.
I think maybe you should be searching for another uro how knows that ic is painful.
sending you hugs and prayers
Rhonda.:kiss:
Pain Patient's Bill of Rights
You have a right to:

-Have your pain prevented or controlled adequately

-Have your pain and pain medication history taken

-Ask how much pain to expect and how long it might last

-Have your pain questions answered freely

-Develop a pain plan with your doctor

-Know what medication, treatment, or anesthesia will be given

-Know the risks, benefits, and side effects of treatment

-Know what alternative pain treatments may be available

-Sign a statement of informed consent before any treatment

-Be believed when you say you have pain

-Have your pain assessed on an individual basis

-Have your pain assessed using the 0=no pain/10=worst pain scale

-Ask for changes in treatments if your pain persists

-Compassionate and sympathetic care

-Receive pain medication on a timely basis

-Refuse treatment without prejudice from your doctor

-Seek a second opinion or request a pain care specialist

-Your records upon request

-Include family in decision making

Remind those who care for you that pain management is part of your diagnostic, medical, or surgical care.

- 1992 Jane Cowles, Ph.D.

[Dani72]

I talk with Christine alot and she sees one of the docs that are listed on this site. I am travelling there tommorow(3 hours away) and now I am terrified because I know I will get no pain meds.

[Dixiefireball]

i'm so sorry Dani. maybe the doctor can do something diff for you where you want need pain medicine. i don't know how bad your ic is mine is chornic.:( maybe if you take a copy of your rights he will at least know you know them and maybe help you. i'm not sure what to tell you but good luck and we are here for you. we do care.
sending you hugs and prayers
Rhonda.:kiss:

[ChristineW]

Hey guys, I do know from what I was told this practice, these Uro's are suppose to be GREAT. I have heard people travel all over to them..I have had NO COMPLAINTS other than the lack of pain relief. They try by doing the bladder instill. And elmirol. (For me now anyhow) I did have the cysto and hydro done. They are very KIND BUT....I am in pain and he said, one dr of the 5 or so there he will NOT give a narcotic! He did give Ultracet and / or Tordol..either one has worked. BUT I believe he will help me witha pain mgmt place, so I will find that out tmorrow...wish me luck and Danielle..def STILL GO!!! There office is really great and maybe you WILL get things I dont and you are seeing a diff dr there!! I do know a person who goes there and does get pain meds...I cant switch from this dr to another in the group cause "your not allowed" onec your a patient , you know. I asked tday. SO..dont get discourraged from me...Im just fighting for those pain relief meds..BUT as for the care and support they are good....so lets hope!!!! DEFINATLEY GO..plz,....do not go cause of me, IM STILL GOING! I went today for the 2nd instill and go again Friday..so Im not quitting...just searching elsewhere for pain meds...and will go to them for treatments and everything else about IC.

Thanks Rhonda too!!!

Christine:angel:

[kelly McC]

I must agree I have seen 10 doctors in 1 years period and still am batting ZERO in getting help or a sympathetic doctor. I also have been to 4 diffrent ER's 8 times and I have become very frustrated that they dont seem to even know what IC is? How to treat it ? Heck this last time the Er doctor told my husband I would take her to a specialist who can help her. My husband said can you recommand one. (shes been to 5)The Er doctor said no we dont do that ? Are you kidding me... But anyway I just wanted to say I still am not giving up... I still call my unsympathetic doctors and continue to be a pest (lol):biglaugh: because someone is going to help me one way or another.. I will call them everyday if I have to.. In fact my last primary finally refused to see me anymore(nice guy) hun.... But I moved on and will move on again if I have too. My husband has decided to go to my next uro appointment in 2 weeks . He said if you does not help you this time we are off to long island to see Doctor Moldwin:woohoo:
My best advice is please dont give up... I have cryed ,screamed acted like: a crazy women loco: whatever to get their attention. And finally ... I screamed loud enough some one hurd me Bless her heart my OBGYN helped me and she has been wonderful... Best wishes and hope you can get the medical care you deserve.

Kelly

[ljl765]

Here in CT that wouldn't happen.. I'm so very sorry you are going through this. It should be criminal to allow a person to suffer, because (usually) they are afraid of possible addiction, which isn't going to happen with careful use. A lot of these MD's are not taught pain management in Med school. So we have to forgive their ignorance..but we don't have to suffer!
Ask for a Urologist who can treats IC, be specific..and even ask before "How many (percentage) of the Pt's are IC Pt's"and only see a Urologist, or a pain management specialist, that is cerified. If you are very young (to them) they will try to hold off on pain meds longer..It's wrong that they do this.
..If they dance around this don't go. Ask before hand if they are certified to give out pain meds to treat the pain.

I personally gave up on DSMO ect. years ago, they did nothing but hurt me, it never helped.... The more I "bothered" my bladder the more it screamed loudly to stop!
If these Md's aren't going to help your pain..you're wasting your time.
The bottom line...IC isn't curable..we'll suffer for life, and we shouldn't have to, no one should. Fire the docs if they continue to refuse to help. Or move to Ct. A beautiful state too:thumbsup:

[Kara Isabel]

I'm so sorry you are going through this.

Just don't GIVE UP! Keep looking, you will find someone to help you. Check around for local pain groups and see if you find someone locally that helps with chronic pain patients.

I know how it feels to be frustrated with doctors but there ARE good ones out there who care and will help.

Hugs,
Kara

[ICNDonna]

This is a very old post --- four years, in fact --- and Christine hasn't posted for two years.

Donna