GP doesn't know IC - questions if I"m a drug addict

[Hollyd]

I'm just crying my eyes out, just got home from GP, having to get more Tramadol, last period caused worst pain w/ a period I"ve had and some of worst pain ever. And it lasted an unusual 8 days and I still only took my maximum dosage once.

I haven't seen him long at all and I don't blame him for his concern, it's just the way he went about the whole thing made me feel really humiliated. I don't even know why Im taking it so hard - maybe just my pain level today which is really bad.

He even knows I'm going to see a pain specialist that does acupuncture so I don't have to take so many drugs if possible - it was just really humiliating. He didn't flat out accuse me of being a drug addict and he gave me a prescription but I have to go back in a week for more and I'm afraid it will be this all over again.

He doesn't check my file at all the &*&(( so he has to be reminded of everything. I had to remind him this only started on Dec 31 06. He keeps asking about my previous GP as if I quit her because she wouldnt give me narcotics! I never needed any when I saw her. If she wasn't such a quack and so far away I'd still see her.

Part of what really depresses me about this disease is having to take drugs like this. I've just spent a fortune on natural remedies to see how I go w/ them.

I'll most likely need more medication before my appt. w/ the new uro on the 30th. I'm trying to get hold of the last one who mistakenly thought fibroids cause all of this to see if he'll just let the GP know I need pain medication - I'll fax him the letter from the gyn telling him they don't. It's just not simple like having a uro who knew what he was doing and could just inform him or handle the pain management himself.

sorry this is so long.

[icnmgrjill]

It sounds like the time a pharmacy tech mouthed off to me by saying "I guess we'll know you're an addict if you're back in a week." Not!!!!!! Boy did I ream out the pharmacy supervisor for that wise crack.

It sure sounds like you had a wicked hormone induced pain/flare. I think what's great, though, is that you can show that you are not using maximum doses. You're explaining how you are using the medications.

The best thing you can do to prepare for next week is keep a pain diary and then ask him how you should use the medication the most successfully to fight your pain. If he can see the cycles and variations, he might have a better idea.

Remember, too, that a big part of pain care is determining WHERE the pain is coming from. It could be from the bladder wall, the surrounding muscles, the nerves or even a nearby organ. So, it would be good to work with him to try to determine where it is originating from. If it's an electrical shooting pain, then we're looking at some nerve involvement. If it's a hot, more intense pain, we associate that with bladder wall irritation (i.e. like after drinking coffees, sodas). If it's a dull, heavier, achy pain, then that is often suggestive of a muscle spasm.

Also, try to be clear on when the pain is the worst. Is it BEFORE, DURING or AFTER urination. Bladder wall pain is often worst immediately before urination and is quickly improved with urination. Pain during urination is often suggestive of a UTI if it's located in the urethra. Pain AFTER urination is often associated with muscle spasms and perhaps straining, especially if you have a sensation of heaviness, or feeling as if something is dropping in your pelvis or that something feels like it's being shoved up your vagina. A pelvic floor spasm can also have a vaginal burning quality.

Try using the LOCATE's system to better describe your pain to your doctor.

L - Where is the pain coming from?? Is it internal?? External?? Is it traveling to othe rparts of your body, such as your lower back, your legs, etc. etc.

O - Other Associated Symptoms: Are you experiencing any other symptoms such as fever, nausea, vomiting, herat racing, shortness of breath.

C - Character of the Pain: If you could describe it in one word, how would you describe it?? Sharp?? Dull?? Shooting??? Burning??

A - Alleviating or Aggravating Events: Does anything trigger the pain?? make it worse or better?? Have you tried self-helpt strategies??

T - Timing: When did the pain start??? How long have you experienced it?? Does it come and go or is it constant??

E - Environment: Where were you and what were you doing when the pain started??? Does it only occur when you sit, lie down, drive??

S - Severity: Rate your pain on a scale of 0 to 10. Does your pain level fluctuate.

Try to be as descriptive as possible!!!! Be a detective with your doctor and present an attitude that you want to work with him to get to the source of the pain and use a variety of pain strategies.

You might want to buy our new Special Report on Pain... which is right on topic with this. Just out last week and available in the ICN Shop!

http://www.icnshop.com

Jill

[Hollyd]

thanks so much for all that Jill. I'll print it out. This doctor doesn't even ask about my pain and isn't even interested in knowing anything about it or the disease I have. I pay extra for a longer session (you get 10 min. usually) and he just wants to rush me out.

Find a better doc? Since IC this is my 3rd in 4 months. This info will be good for hopefully a uro or a pain managment doctor.

I already keep daily notes on pain, what I take at what time, relation to pain triggers like going out, period, I even came in w/ the exact amts. I'd taken since I saw him last but he couldn't be bothered getting to that. He was ready to usher me out b4 I even got to tell him I need to have my urine checked for a UTI. And that's an average doctor around here.

It's beyond disgusting. I'm doing my part and then some, believe me, they don't do theirs. This is partly why I'm stocking up on all the recommended natural supplements so I can at least attempt to avoid doctors as much as possible.

Maybe you can help me w/ the shop...I keep ordering things and never hear back on the shipping charges to Australia so my order can never go through. Am I doing something wrong?

Thanks so much for all this info, I'll be seeing a pain specialist who my gyn recommended to me who uses acupunture next week. I'll use this for that appt. Hopefully she'll care!

[Berkshire Road]

Holly, I just want to say how sorry I am that you are going through this. Before my diagnosis about two years and a half ago, I spent nine years trying to get an answer about my pelvic pain. I must have seen at least twenty doctors, and I was accused of being an addict, repeatedly (and also of making the whole thing up to get attention). So I know how upsetting and insulting and humiliating that kind of experience can make you feel; a lot of us here do.

You're doing everything right. You're keeping your pain journal, you're trying your best to communicate with your doctor, and you don't deserve this kind of treatment. Worse, the stress can adversely affect your other symptoms. But there are good doctors out there, there are those who will listen and believe you.

I know that when I was first diagnosed, I was given a lot of information and some statements from patients about how they "just perservered" until they got the right treatment -- and I wanted to throttle them. HOW did you perservere, WHAT did you do, WHERE did you look? Well, we found my uro/gyn who diagnosed me on the internet, a listing for a pelvic pain clinic. It's 70 miles away but I still see him because he is the right doctor for me. And I found my pain management doctor by sheer, bloody good luck -- picked her out of the phone book. As it turned out, she herself has IC (in remission) and she completely gets it. I get the pain meds I need, and when I don't need them, I don't take them. And I took the opportunity to educate every person in the local pharmacy about IC (customers included) when I filled my second narcotics prescription in two weeks.

I'm very tired right now so probably I am not making this as clear as I want it to be. I simply want to tell you that you are not alone in this struggle, and that there is always hope. It seems as if the understanding of IC in Australia is not as wide-spread as in the US (and even that isn't enough), but there are doctors who get it. And when you go to a uro and/or pain clinic, you can bring with you the information on IC that you can get at this site and also on the ICA website.

I wish the best for you. You will be in my thoughts.

[Hollyd]

Thanks very much Carolyn. Geez, what you went through. (loud sigh) And so many here go through. I've never needed narcotics before....you're right the stress of this is really overwhelming. I cried my eyes out over and over since coming home. My husband is coming w/ me to the next appt. I just couldn't face him alone. I hope to be armed w/ letters from specialists but for all I know the uro I last saw won't back me up out of his own ignorance.

This is really hard to deal with.

[malone]

Just wondering

Hi, My Urologist did the exact same thing to me but this was after he did 70 or 80 DMSO treatments, tried to stretch something that I NEVER want to do again and then humiliated me by saying he thought I had a drug problem! Back then I cowered and felt so bad about myself even though I knew thr truth! I would never put up with that now! But I was wondering why your GP is handling your IC if you were diagnosed in 06? If you find a good Uro (not easy!) maybe that would help also. Just a thought--feel better--Malone

[Hollyd]

Hi Malone,

Geez what a jerk your uro was!! A lot of these people must get off on insulting people instead of facing their own lack of knowledge and the realities of the disease. But it's one thing to know that intellectually and another to be weak w/ pain, go for help and then be humilated like that. The pain really weakens your defenses I think.

I've read that sometimes when faced w/ a terrible disease patients may take their anger about the disease out on their doctors. It needs to be stated that in the face of an incurable and frustrating disease many doctors take their frustrations out on their patients. It really shows the failings in the personality of a doctor. Conversely, when you find a good one who shows compassion, you're seeing a person w/ a lot of personality development. Very rare I guess.

Me...Symptoms started on new year's eve of 06 during the day...diagnosis has only just been sorted out after a lot of tests and 2nd opinions. I have an appt. w/ a new and hopefully better uro on the 30th. I've been waiting to get in to see her for over 2 months. One uro I decided to see in the meantime refused to handle pain management and didn't refer me onto a pain specialist, wanted my GP to do it. The other uro refused to even discuss my pain until CT scans came back and then misdiagnosed the cause of my pain and wanted me to see a gyn and didn't ask me to come back. Gyn said he was wrong.

It's just been a debacle.

[Moonheart]

Must be the week for it I guess.

I have had a really stressful time being evicted recently and trying to find a new house and so didn't understand or hear my uro tell me I needed to schedule instills twice a week (still don't think he told me). So now he thinks I'm out of compliance and because I lost track of my meds and went through them too quickly because of so much distraction he said "I don't treat addicts". I was mortified! I told him, I want to get well more than anyone I can assure you. Then I heard him in the hallway telling the nurse there was a real possibility I was an addict and drugseeking. HELLO! He did my hydro and diagnosed me! Grrrrrr...it's so frustrating!!!

I'm sorry you're going through this too. They should all be hung. How would anyone know to go looking to a Uro for drugs anyway. I never even knew before this that your bladder could hurt.

[Hollyd]

Moonheart, I can't believe this!!!! This is the &*%&# that diagnosed you and he has the nerve to speak to you this way!! I'm truly shocked. I still think my GP is $&#* but I am new to him and he didn't diagnose me. There is no way I can wrap my mind around what this *(*& said to you other than sheer cruelty.

What did you say? What are you going to do? From everyone who has told me how often this goes on I have little hope for how I'll be treated because before I got sick I've had shocking treatment from some doctors here and since I've been sick as well.

The last GP I tried while sick w/ this I finally told 'where did you study medicine, under the Nazi's?'. This was after she dropped me as a patient! Why? The last uro I saw said I think your fibroid is causing all these problems and you should see a gyn and get it removed. I made an appt. w/ a very good gyn surgeon but it takes forever to get into see him. She told me to get on his waiting list. They wouldn't let me on it unless she herself called. I relayed that to her and she said "I'll have to think about it, I'm not comfortable w/ that". I was shocked, asked why, she said "I don't like being pressured to do things I'm not comfortable with". I was nearly in tears, told her I wasn't trying to pressure her, I just didn't understand. She said "You've been in pain for months now so I don't see any reason why this is all of a sudden something I'm supposed to rush about".

This (*(&*& was into "punishing" me for being in pain!! I told her it was only days earlier that the uro told me he thought it was the fibroid. She was still unmoved, said she'd have to think about it. As if even if I learned months earlier I didn't deserve assistance in getting out of pain. A lousy phone call when she charges the same money as the specialist surgeon because she was supposed to be so great!!!

thanks for sharing and I'm so sorry you're in the same boat as me.

[Moonheart]

l don't know, but I'm thinking of telling him that what he said and what I overheard humiliated and hurt me. I've been on pain meds for over five years, and have a well-documented file of pain and validated tests for the problems I have. He really had no right to shame me like that.

Hugs,
Moonheart