"You're addicted to pain medicine."

[Square Mom]

I am a newly-diagnosed IC patient, but I have had frequency for 10 years, and also a couple of periods of great pain in the past. For the last 7 months I have had worse pain than ever before, and the pain is constant. I have had a cystoscopy for it this time (also had one years ago), and they never found anything absolutely definitive (either time).

My last urologist said he thought it was pelvic floor dysfunction and probably not IC, gave me pain meds and Elmiron (if I wanted it), and told me to see him in three months. During those 3 months, I had to keep calling the nurse to get pain medicine (Ultram/tramadol) refills. During that time, I learned a lot about my symptoms and how they relate to diet and stress, and I started the Elmiron when I realized that it just couldn't be anything else but IC. I asked the nurse if I should come back in to see the doctor, and she said, "No." I started taking Elmiron 2 months ago. Finally, just before I was to come and see the doctor again, the nurse told me I couldn't have any more pain medicine. She said, "You're addicted to pain medicine." She said that I could come in and see the doctor again, as long as I understood that he wasn't going to give me any more pain medicine.

I tried to taper my pain medicine like they said, but reducing doses only meant being in more pain! I switched urologists quickly, and the new guy says I have IC and is now giving me bladder treatments for the last 2 weeks. The bladder treatments feel good at first, like they are hitting the right pain spot, but don't feel like enough to manage the pain. (I got my pain medicine represcribed by my PCP when I went to get the referral to the new urologist.)

Anyway, I am really, really upset about being labeled a pain medicine addict! I have never been addicted to anything in my life ... I have never done drugs or smoked or had more than a sip of alcohol. I have never even had a coffee habit, and I don't like taking medicines at all! I have been trying to quit the Ultram -- I would LOVE to quit taking it! -- but when I do I just have the bladder pain all the time!!

I hope that the Elmiron and bladder treatments start working for me soon, but I am terrified that I am just going to be disregarded and left in pain! I feel helpless, and horribly indignant that someone called me an addict.

Surely the new urologist will provide pain medicine if I need it (?) I am scared to even ask ... scared of being labeled again. I don't have pain anywhere but my bladder, and I don't think I am crazy. I'm just so scared, wondering how I will be able to take care of my toddler and my husband if I am in pain all the time. It's so bad that I just don't think I can live without some kind of relief.

[Portia17]

THE doctors all the freaking same.

I went to pain management and they dont call me anynames but help me

Hope this helps because i get dmso and beleive me without the pain meds dmso justdont cut it

[Dixiefireball]

first off how in the heck can an R.N or Dr. label you as a pain pill addit when Ultram/tramadol isn't but a boast of aleve. it has no narctic's (sp?) in it. That really fires me up!
second of all where in the heck does that R.N get off telling you how you feel ?? it's very clear she doesn't have I.C isn't she lucky. Remember you do have right's and if that doctor doesn't want to treat you pain he must send you to someone who can get your pain under control.

I'm sorry hon you are having to deal with people who don't understand.
I take my bladder installments at home they have really been a God sent to me. I hope They start working for you quickly.
sending you hugs and prayers
never give up hope.
Rhonda

[kelly McC]

I dont know about others but I found through my journey of uro visits they were not willing to prescribe pain medicines. My pcp wrote my scripts for apin medicine if yours is willing I would explain your situation I also told her I felt comfortable having one doctor write all my scripts. I found a wonderful pelvic pain specialist while waiting to get into a pain clinic and he now writes all my scripts. When you take pain meds to relief pain it does not make you addict. I would talk to your new Uro ask what he thinks about pain meds for treatment the worse they will say is no . You can find another or talk to your pcp or ask for a referral to pain clinic. You as a patient have a right to have your pain treated . I documented all my pain time level of pain what helped what did not brought to my appointments with me and brought a copy of the patients pain rights.
Kelly

[Betsie]

If I weren't concerned about having a decent office relationship, I might ask the nurse to not play Dr and that you would rather discuss your personal issues with the Dr., pain included...but it's probably not good advice, when sucking up is better. Grrrrrrrrrrrr. :bonk: :bonk:

Also I hate to say it, but she's probaby right on about the pain meds....UROS do not seem comfortable prescribing pain meds much longer thsn post procedure/surgery. :hmm:

I hate to repeat myself on this, but I really advise you to speak with your Primary Dr. about pain meds. I have found it to be far more productive and since it impacts my general health, I feel he is better equipped to make decisions and tweak problems...besides, my URO works in a huge city teaching hospital and often my calls back are days after I leave a message...though he alwys calls. He prescribed for over a year which is long from what I hear about most URO's. :bow:

Good Luck, there is nothing worse than being labeled anything, let alone "addicted to pain meds"...I would save myself the arrogance and talk to your primary. Good luck, this is that never ending issue with IC....I have not made peace with it at all....and now with a relentless itching side effect from pain meds, I am seriously thinking of getting rid of any med that isnt life altering. So sick of this each month and my Dr. is a doll....ugh...and Ultram? For me at least that is like being accused of being addicted to my vitamins. :rolleyes:

[Dianna M]

I have been lucky that my GP has prescribed my pain meds since I got diagnosed with IC - Which I got after a pelvic surgery. I know that my urologist would not because at my first meeting with him when he reviewed my pain meds he told me that he always as the GP referring him to me, continue to prescribe the monthly pain meds and he prescribes the urology meds.
So had my GP not wanted to precribe my pain meds I would be in BIG trouble

[Cricketmk3]

I would assume that you are not addicted to pain meds unless you take them unnecessarily. For most of us with this disease, they are a necessity.

[ICNDonna]

It was not appropriate for that nurse to make such a statement. If she said what she did because she was told to do so by the physician, my suggestion would be to seek another opinion from another doctor.

Donna

[Sarojini]

Most chronic pain patients are NOT pain pill addicts -- in fact they are less likely to become addicts because they tend to take the medicine only when in pain, so that they can function like normal human beings, instead of to escape their lives like an addict would.

It's so unfortunate that so many doctors feel this way these days. Betsie's right; uros just don't like prescribing pain meds unless you've just had surgery (although I have found one of the last few who does do it -- she works in a comprehensive center dedicated to pelvic pain, though, so it's like a urology/gynecology/pain clinic practice all rolled into one). I agree you should try your primary care doctor and ask for help with the pain there. You can also ask your PC doctor for a referral to a pain management clinic. They may be able to help you as well (although like anything, some are good and some are bad... it would be good if there were a number of them so you could research each one and see which is experienced in treating chronic pelvic pain).

I think a lot of people have been labelled an addict too. At one time, my own husband accused me of being addicted to Percocet (and at the time I was taking from 0-2 of them per day, only when I was so sore I couldn't go about my errands). It was insulting and incredibly insensitive (he gets migraines and I don't accuse him of being addicted to his headache meds), so I know how you feel when someone says that to you.

Good luck :grouphug: You're not an addict. :)

[Babs RN]

I can feel your pain girlfriend, no pun intended. I have been dealing with this very issue over the last 6-8 months and know how humliating it feels to be told that. I am a nurse on top of it so I get a lecture too. My theory is this--I take pain meds to function--take care of my 4 year old(alone right now hubby is in Iraq) do my daily chores, go grocery shopping...and sleeping. I have gone days without sleeping due to pain during this ordeal and it lessens my coping skills and makes me feel worse. I finally decided to find a new PCP that is not in the Army who is interested in IC and my journey and is willing to help my pain no matter what. Hang in there and if you need to vent, I am here for you....

Hugs,
Barb

[diane57]

Since you've already switched uros, I would just send a letter to your prior uro, repeating what the nurse told you, and the date this happened, and telling him that you thought the comment was inappropriate and hurtful. The doc may not know the nurse makes comments like that, and it's something he SHOULD know. You have nothing to lose since you've switched uros. And don't EVER be afraid of asking for pain medicine if you need it in the future, even if you've been treated poorly previously.

What an IDIOT that nurse is!!!

[Cheries]

You need to be treated by a pain management doctor and avoid all of these other problems. I find it is much easier and they take my pain more seriously. Find one on your insurance and make an appointment. DEMAND that your pain be addressed. It will greatly improve you life. Good luck and let me know what you can locate.

[Hangin' Tough]

Just another thought: I would get a copy of your medical records from that doctor and ensure that they have not written that "you are addicted" anywhere in there. If they have, I would demand that they remove it or get sued. Just a thought.

Steve

[Ginny]

Most Uro's will not give you pain medication. Try a Pain Management Specialists.
That nurse was way off base.

Ginny

[JenG]

I know exactly what you mean!!! :mad: Half the docs I have seen would not prescribe anything - no pain relievers, no muscle relaxers because they didn't want me to turn into a drug addict! I was not even given the chance to see if they would work - nothing like painting everyone with one broad brush stroke! :cussing:

When I finally got a doc to prescribe I could only get a script for ultram and zanaflex - only 3 mnths at a time. Cannot ask for more, cannot take more than 1 a day or I will run out before the 3 months are up. And everytime I ask I am nervous because I get that same "drug addict" look.

I know I should see a pain management doc, but I already pay out of pocket for my bladder treatments and my physical therapy. My HMO does not pay for these or a pain management doc. :rolleyes: Broke or in pain (usually both!) What a way to live!!

[emilyrose197377]

I can't believe that the nurse said that to you that is a shame. Chronic pain people take pain medicine because they are in pain not because their an addict.

Kim

[SandyRN]

I see the original post here was written a few months ago, but I'm curious to how it all turned out. Any RN who said you were addicted to pain meds, which the ones you were taking are not even a scheduled narcotic for that matter, should have discipline actions against her, no matter whether the doctor told her to say that or not. I cant imagine any doctor telling me to tell a patient that....I would NEVER say it. Mind boggling how people are treated when they are in pain...and it's sad :(

Anyway, I'm just curious, like I said, what the outcome of all of this was.

I hope you got the help you deserve!

Sandy

[mare mare]

Hi Square Mom!!!!!
You're pain is REAL!! My Dr. is understanding about my pain, but when I call for a refill, I have to deal with his nurse and she treats me like I have an addiction to Hydrocodone. I average 2 sometimes 3 a day (not at the same time) and a lot of days (when I"m having a flare)I'll still be in pain but I push myself because I don't want to take more pain med. The last time I visited my Dr. the receptionist that checked me out told me "Where gonna have to wean you off of this stuff!" I thought that was very unprofessional and really none of her business! I told her there was no cure for IC and I went a very long time (2 years) to 2 different ob gyns and many tests to get me to the place where I am. Finally understanding why I was in pain and it wasn't in my head.
I've been thinking about writing my Dr. a letter and telling him about my experience. Do you think he would want to know about my experience with his employees? He is always understanding and asks me if I need anything. It's just when I call his nurse just makes the decision not to tell him.She tells me I'll have to come in even though I've never missed a regular appointment and then I usuall see his assistant and I have to go through everything again with him!! I realy don't think everyone understands IC!
I'm going to tell the about the ic-network website. I've been thinking about going to a pain management clinic. What do you think? Good Luck!!!!

[magtech]

I feel your pain! That is a horrible thing that happened to you as another user has said if that nurse would have IC she would understand you better-lucky her she doesn't. My IC is controlled better now by Elmiron and Elavil, but it wasn't always like that. The past two years I have had multiple flare ups, and ,the last being about four months ago. It was a living hell. I think that we can all relate to this. I took pain pills so I could function. There is no way that anyone should have ever told you that you are an addict. I am a mental health counselor, I deal with addicts everyday. It is completley different. Addicts take pain killers to escape from reality. IC patients take it so they can function on a day to day basis. It is like comparing apples to oranges. I hope this makes you feel somewhat better. Hang in there!

[Portia17]

i HIGHLY RECOMMEND PAIN MANAGEMENT. I go to mine monthly and she gives me all I need.

[Square Mom]

It's been awhile since I posted this ... since then I have gone back to the same urologist, and he apologized to me when I told him what the nurse said. He said she must have been having a bad day or something. Also, he admitted to me that there is a lot of pressure on urologists (by insurance companies? I'm not sure ...) NOT to prescribe long-term pain medicines. Not great if you are an IC patient.

I went back to my primary care provider and asked him if I should see a pain specialist, and he told me no, not if all I need is the tramadol. Thankfully, he is now prescribing me enough tramadol to take care of my pain. If he had refused to, I would go to a pain specialist.

After reading about other people's experiences and becoming more educated, I realize that the pain is not all in my head! Though for a long time I felt so guilty ... no thanks to that nurse. Thanks to everyone for your support.

I am a registered nurse also, and I just returned to work after staying home with my son for three years (during which the IC reared its ugly head). I know that nurses look with suspicion on any patients who requests pain medicines, and the more urgently you seek it, the more likely you are to be dismissed as "crazy" or labeled as a "drug seeker." I can tell you, though I never dismissed my patients' complaints of pain before IC, I certainly look at them in a different light now ... with much more sympathy, since I've been there.

[Babs RN]

Yup Square Mom, I know about it changing your perspective. I never questioned my patient's pain, but now I feel like I am a better advocate. Especially if I wind up working in the ER again, where most people receive that "drug seeker" or "junkie" label. Having been called that myself as well as being denied treatment will allow me the perspective to intervene for my patients.

Hugs,
Barb :grouphug:

[tac1962]

I am a registered nurse also. Being a chronic pain patient has made me a better and less judgemental nurse when it comes to my own patients.
I also feel like I am being judged when I check out after my urologist office with my RX for pain meds. I don;t want to take these meds, but i have to take them! People just don't get it...
TC

[Tina K]

I hear you!!!! I feel like a druggie, in the past before my last surgery I went from doctor to doctor no one would do more surgery no one would give me the meds for very long. Right now my doctor takes care of the bladder and my endometriosis since he is a pelvic disease specialist instead of a gynecologist or a uriologist. Kind of both together. Anyway, I am on Elmiron and I think they believe that just does it. I have had good luck so far getting pain meds but I don't think it will last. It seems that other things irritate that whole area, exercise, stress, MY KIDS etc. Go wherever you need to get what you need. You are not an addict, when we feel great we don't take the dang pills we are so happy to feel normal for a day much less in a fog. You don't have to be miserable when there are means to fix that. Plus, Ultram isn't a narcotic so what's the big deal. The nurse was rude and made you feel bad and there is no excuse. If the doctor feels that way he should tell you himself. Get to the pain management center. With these kind of problems sometimes we need some relief or some assistance just to do the normal things others take for granted.

Good luck and hugs,
Tina

[alana rose]

My uro wasn't willing to give me pain meds...he said that will give you a stigma.
My gp is wonderful-she never questions me. She automatically brings in her triplecet (sp?) pad with my file. (I probably have my own private one-lol!) I told her that my uro told me that my mind was creating the pain. She said that things will be different when I see my uro next. I am sure that she called him because he sure had a different attitude towards the pain meds. He even asked me if I needed anything!!!!
My gp said that specialists are leary in prescribing pain meds because they aren't used to doing it. Gp's see their patients more regularly. I do take pain meds daily.

I love what my gp told me:

Addicts take pain meds to escape their lives-
We (chronic pain sufferers) take pain meds to HAVE A LIFE.

This is so true....I remind myself of this when I feel guilty taking pain meds. Like when I was in the hospital (she Evil nurse thread).

Take care and gooluck my dear!

[debbyakamom]

I am a newly-diagnosed IC patient, but I have had frequency for 10 years, and also a couple of periods of great pain in the past. For the last 7 months I have had worse pain than ever before, and the pain is constant. I have had a cystoscopy for it this time (also had one years ago), and they never found anything absolutely definitive (either time).

My last urologist said he thought it was pelvic floor dysfunction and probably not IC, gave me pain meds and Elmiron (if I wanted it), and told me to see him in three months. During those 3 months, I had to keep calling the nurse to get pain medicine (Ultram/tramadol) refills. During that time, I learned a lot about my symptoms and how they relate to diet and stress, and I started the Elmiron when I realized that it just couldn't be anything else but IC. I asked the nurse if I should come back in to see the doctor, and she said, "No." I started taking Elmiron 2 months ago. Finally, just before I was to come and see the doctor again, the nurse told me I couldn't have any more pain medicine. She said, "You're addicted to pain medicine." She said that I could come in and see the doctor again, as long as I understood that he wasn't going to give me any more pain medicine.

I tried to taper my pain medicine like they said, but reducing doses only meant being in more pain! I switched urologists quickly, and the new guy says I have IC and is now giving me bladder treatments for the last 2 weeks. The bladder treatments feel good at first, like they are hitting the right pain spot, but don't feel like enough to manage the pain. (I got my pain medicine represcribed by my PCP when I went to get the referral to the new urologist.)

Anyway, I am really, really upset about being labeled a pain medicine addict! I have never been addicted to anything in my life ... I have never done drugs or smoked or had more than a sip of alcohol. I have never even had a coffee habit, and I don't like taking medicines at all! I have been trying to quit the Ultram -- I would LOVE to quit taking it! -- but when I do I just have the bladder pain all the time!!

I hope that the Elmiron and bladder treatments start working for me soon, but I am terrified that I am just going to be disregarded and left in pain! I feel helpless, and horribly indignant that someone called me an addict.

Surely the new urologist will provide pain medicine if I need it (?) I am scared to even ask ... scared of being labeled again. I don't have pain anywhere but my bladder, and I don't think I am crazy. I'm just so scared, wondering how I will be able to take care of my toddler and my husband if I am in pain all the time. It's so bad that I just don't think I can live without some kind of relief.
I can SO relate to your story here!!!
Being talked "down to" or that certain "look", like we're addicts. And you are right, especially if you ask for specific medications!
I mean, what is wrong with, I KNOW WHAT WORKS FOR ME!!
iT'S THAT SIMPLE. We've had flare and this is what worked...end of story.
I am at the point they have made me "ashamed" of asking anymore!!
It's Very Dehumanizing!!!

[debbyakamom]

I also know EXACTLY what you mean.
I am in my 2nd BIG FLARE which is much worse than the other one and I just don't know what to do!!!:headbang: :headbang:
I have to start all over with new Drs due to changes in my Health Care plan and I am SCARED TO DEATH!!!:( :(
I know what I went through the first time. I found that even when I finally got to the "pain Management" stage they we're almost as bad!!:confused: :confused:
They even made me feel like I was "drug seeking" too!!
I felt totally de-humanized by now. Like you, Square Mom, I never did any drugs ever in my life either!! I don't even drink! And I'm 53!!!
But just like all of you i was not actually "called" a Drug Addict but they sure did do a great job of making us feel that way right down to their receptionist (at times). I even went to 1 Pharmacy that made me feel this way.
I think it going to even be worse this time because now I KNOW what works for me, and I made the HUGE mistake of coming right out and telling the Dr. what worked!!
It was like as soon as I said the DREADED WORDS IN TREATMENT TODAY: OxyContin, Percocet & Valium Her eyes almost jumped out of her head!!!:dizzy: :dizzy: :help:
They would much rather do much more invasive stuff that simply treat the pain, which we know works and eventually (for me anyway) subsides greatly,
and then I don't need much of anything at all!!!
My body has been INVADED enough!!! As I also tend to get adhesions from ANY abdominal cutting!!! Which are even WORSE tan I.C. and MUCH more dangerous!!!
I definitely am at the point of needing to bring an Advocate.
There is an article on site similar to advocacy at:
http://www.ic-network.com/iclifestyles/mar01.html
Right now I am in EXCRUCIATING Pain and this is after my 1st appointment with my new Uro!!
I feel just to "kicked down" by the Medical Community!!

[Kimchi]

This is a pure outrage that we pain IC patients are treated like this. I find myself explaining myself each time I go to the pharm w/ my prescriptions for my pain medication and the pharmacist who has been there for years, now looks at me like a drug addict since starting the Duragesic patch. I almost said something to her. She used to be so friendly and now never says a word. I think next time I will say.... is something wrong? You used to be so nice and now you never talk to me.

[bethelliott]

I don't know how you feel about the Doc because my Uro definantly takes care of me pain wise, but my family accuses me all the time of being ADDICTED!! I get so frustrated with them because they have NO IDEA!! what I go through on a daily basis! I finally got to the point with my Uro's help to tell them all to kiss my behind! :cussing:

[debbyakamom]

I don't know how you feel about the Doc because my Uro definantly takes care of me pain wise, but my family accuses me all the time of being ADDICTED!! I get so frustrated with them because they have NO IDEA!! what I go through on a daily basis! I finally got to the point with my Uro's help to tell them all to kiss my behind! :cussing:
WOW!!
Dido for me!!
I just announced to my Mom that when they are here from FL this summer we are ALL going to sit down and talk about this!!:tsk: :cussing: Because I'm sick of it too!!!
At one point they had ME almost believeing it!!!:confused:
I mean She agrees with me but everyone else in my family is acting like I'm an ADDICT!!
And you think they would know me!! I AVOIDED ALL drugs in my life!!!
I don't even drink!! Like at 50 yrs old all of the sudden I'm going to take a PRESCRIPTION from my Dr., which I'm always leary of starting new ones, of all things, and decide to start deliberately abusing my meds!!!
I mean PLEASE give me a break!:loco:
Thanks for the feedback :hi: I sure needed that. Sometimes I think we're all alone, going through something like this. Thank :pray: GOD:pray: for this website!!!

[Kimchi]

I think we should get the Drs who rx our narcotics to write letters to unbelieving family members explaining to them how painful and debilitating this disease is and tell them that the narcotics are important for us just to be able to function. It is awful that b/c we take a pill or something that we should be classified as an addict. Tell them, yes, we are addicts, we are addicted to feeling normal and being able to function. :rant: Gosh this just burns me up. Tell them if they want to feel 1/2 of what we feel, to pour vinegar on their next cut. That will give them some idea.......

[bethelliott]

Kim

Hey I love that idea. I'll mention it to them and they just better hope that I'm not around when they get cut...I might just show them myself!!:evilsmile



Beth

[debbyakamom]

Yep my Dr said this to me just today!!
And I'm at the BEGINNING of a MAJOR FLARE!!!
She obvously is not going to be any help to me at all if she already is having problems writing scrips.
I mean it is only my 1st refill!!
OMG I'm dying ing pain here & don't know what to do.
Except cry my eyes out again, here it goes again, sorry gotta go sob for a while!
:toilet: