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Old 10-01-2007, 08:39 PM   #1
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new to the group - question/story

Hello everyone,
I am new to this forum. I have been seeing a urologist for about 6 months due to some bladder/lower pelvic pain. They have put me on a number of medications for bladder frequency/urgency and neurontin for nerve pain. I find the neurontin to be ineffective. She was treating me for a condition called Interstitial Cystisis. She also started me out on darvocet for pain. When that didn't work she switched me to percocet 5/325 to take as needed. One appt she decided to do a baldder instillation and it sent my pain level through the roof. I called her office to tell them about the adverse effect and she switched me to percocet 10/325 also as needed. For a while she was willing writing prescriptions I would go through 30 pills in about 13-20 days. After a while she said she really wanted me to get off the percocet, since it wasn't good long term but she kept writing the scripts. Finally she sent me to a uro/gyn that was two hours away from my home. For a second opinon. Said she didn't want me in a pain clinic as all they do is keep people on narcotics. The doctor she sent me to was new and wasn't set up to take patients but saw me for a consultation in August. The new doc wanted me to come see her in Oct. for a cysto on bladder. She wants to see the IC for herself as "she does not believe anyone has it until she sees it! Did I mention this new doc is located 2 hours away from me!! Since she was a distance from me and would be a while before I could see her again, my old urologist said she was happy to continue my pain meds. I got a script from her and then was called by her nurse to say she had done all she could for me and she was refering me to pain managment. This came out of no where. She wouldn't even call back to tell me if I should continue with the second opinion. I went to my primary to ask his opinion and he agreed that maybe it would be better for me to see a pain dr, even though I told him I was being treated for IC and then after months was told go to a pain clinic there is nothing urologically wrong with you!!! Anyway my primary gave me a refferal and a script for my percocet. I told him on average I was taking 2 a day but it just depends on my pain sometimes I take 3. He wrote it to take 2 a day as needed. Well I have had more days where I have taken three than two so I am going to run out before the time it was written to last. I do however have an appt set for a pain clinic next week. I was told to bring in my medication with me and also to report 45 minutes before my actual appt time that is only to last 30 miuntes...why is this??? Also this is supposed to only be a consult when I'm pretty sure my ref said to consult and treat. What should I expect at this appt and am I going to have a problem that I have taken more meds??? My other doc always wrote them to take 1 every 3 hours as needed so I didn't notice the diffence in the directions. Any guidance would be greatly appreciated!

 
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Old 10-01-2007, 09:41 PM   #2
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Re: new to the group - question/story

Hi MH, First of all, it's rediclous to think that all PM clnics due is keep people on opiates. Opiates are still ther exceptiion and not the norm, when it comes to treating pain. You might want to look into one that specializes in IC as I hear it can be extremely painful. A good clinic uses a multi faceted aproach for each patient. Obviuously you have different needs than someone with a bad back or migraines, There are meds they would use on you and not on me and procedures that would do to me and never do to you.

The time early is likely to fill out a complete history so be sure to take all the info you need. Every doc, every method to treat your condition and the contact info for everyone that's treated you is something you should be able to supply, If you can prepare a documant that has all that before hand you won't be stumbling for info and the info you give will be acurate. Every PM clinic I went to did psych evals, UA's, and comlete histories before they even decidied if they would take a patient on, so I would hardly say all they do is push dope.

The fact your doc or the second referal can't help doesn't mean someone else can't. The more expereince a doc has treating a specific problem the better off you will be and by no means are narcotics all PM clinics use, Untill a few years ago, most PM clinics flat out didn't prescribe any pain meds and used alternative methods whether it's nerve bocks, self hypnosis or more specific treatment for your problem.

Obviously your old doc wasn't comfy prescribing opiates indefintiely, that's the norm in most fields and I wouldn't even bet 50% of docs who practice PM use opiates long term. Nuerontin is just scratching the surface of meds used in PM so I would simply look at this as going to get an opinion as far as trying to find out what's going on and how to cope with the symptoms.

I didn't see where your from, But there is a Doctor, Danial Brookoff in tennesee that was one of leading advocates in Pain managent and his specialty was IC a few years back. I'm sure you can find plenty of his articles if you do a search or are fortunate enough to live in Tenn he might be worth the wate to see.

If you haven't had an MRI, I'm not sure why they would do an ESI blindly thinking you have disc problems, it really sounds like they are passing the buck if you haven't even had the basic diagnosistcs to rule out referred pain rather than IC. Pain management is a long road of trial and error unless you happen to run across one of those docs your present doc is afraid of that just writes scripts for narcotics to everyone. Any doc can do that, so why would any doc go through the hassle and expense of maintaining a clinic simply to run a pill mill.

Good luck and go with an open mind as far as what can they try and what can they do to pin down a DX to develop the best treatment plan for you..
Good luck, Dave

 
Old 10-02-2007, 04:33 AM   #3
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Re: new to the group - question/story

Hi, I was treated for IC for 6 months and it turned out not to be it at all. It was endometrosis. I agree with shoreline make sure you find a experienced urologist in this disease and get an accurate diagnosis. Thankfully, I saw the right urologoist, fourth opinioin, and he was able to diagnosis endometrosis in my bladder. He knew what he was looking at. PRAISE GOD. My heart goes out to you.

 
Old 10-02-2007, 06:18 AM   #4
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Re: new to the group - question/story

Quote:
Originally Posted by 123dietdrpepper View Post
Hi, I was treated for IC for 6 months and it turned out not to be it at all. It was endometrosis. I agree with shoreline make sure you find a experienced urologist in this disease and get an accurate diagnosis. Thankfully, I saw the right urologoist, fourth opinioin, and he was able to diagnosis endometrosis in my bladder. He knew what he was looking at. PRAISE GOD. My heart goes out to you.
Thanks for your thoughts. As bad as this sounds I am hoping for endo on the bladder. I had a hysterectomy at the beginning of the year for endo. They only removed my utereus as I thought I was too young to start menopause. I keep asking...hey is it ridiculous to think the endo could be somewhere still in there?? All they do is just look at me and shrug. I am frustrated!! I really want to find something that works. I don't mind taking the pain meds because they work. It's just hard to be able to do other things will taking them. I'm sure you all know what I am talking about.

 
Old 10-02-2007, 06:27 AM   #5
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Re: new to the group - question/story

Quote:
Originally Posted by Shoreline View Post
Hi MH, First of all, it's rediclous to think that all PM clnics due is keep people on opiates. Opiates are still ther exceptiion and not the norm, when it comes to treating pain. You might want to look into one that specializes in IC as I hear it can be extremely painful. A good clinic uses a multi faceted aproach for each patient. Obviuously you have different needs than someone with a bad back or migraines, There are meds they would use on you and not on me and procedures that would do to me and never do to you.

The time early is likely to fill out a complete history so be sure to take all the info you need. Every doc, every method to treat your condition and the contact info for everyone that's treated you is something you should be able to supply, If you can prepare a documant that has all that before hand you won't be stumbling for info and the info you give will be acurate. Every PM clinic I went to did psych evals, UA's, and comlete histories before they even decidied if they would take a patient on, so I would hardly say all they do is push dope.

The fact your doc or the second referal can't help doesn't mean someone else can't. The more expereince a doc has treating a specific problem the better off you will be and by no means are narcotics all PM clinics use, Untill a few years ago, most PM clinics flat out didn't prescribe any pain meds and used alternative methods whether it's nerve bocks, self hypnosis or more specific treatment for your problem.

Obviously your old doc wasn't comfy prescribing opiates indefintiely, that's the norm in most fields and I wouldn't even bet 50% of docs who practice PM use opiates long term. Nuerontin is just scratching the surface of meds used in PM so I would simply look at this as going to get an opinion as far as trying to find out what's going on and how to cope with the symptoms.

I didn't see where your from, But there is a Doctor, Danial Brookoff in tennesee that was one of leading advocates in Pain managent and his specialty was IC a few years back. I'm sure you can find plenty of his articles if you do a search or are fortunate enough to live in Tenn he might be worth the wate to see.

If you haven't had an MRI, I'm not sure why they would do an ESI blindly thinking you have disc problems, it really sounds like they are passing the buck if you haven't even had the basic diagnosistcs to rule out referred pain rather than IC. Pain management is a long road of trial and error unless you happen to run across one of those docs your present doc is afraid of that just writes scripts for narcotics to everyone. Any doc can do that, so why would any doc go through the hassle and expense of maintaining a clinic simply to run a pill mill.

Good luck and go with an open mind as far as what can they try and what can they do to pin down a DX to develop the best treatment plan for you..
Good luck, Dave
Thanks Dave,

It makes sense that she didn't know what she is talking about, same way she prescribes some heavy duty medications for months and then just drops me. Where is the compassion these days? So it sounds like it may take a while to develop a treatment plan. What happens in the interim while you are on pain. Will they keep you on the same medications as my doctor has had me on? Or do they take you off? And if so do they at least ween you correctly?? Is a UA a urine analysis? What do they do that for? I am a little nervous about this whole thing. Especially since I have been taking more than 2 pills a day some days. I don't know if that's a big problem or not but from reading these boards it's sounds like the practice of pain management is helpful but scary!!!

 
Old 10-02-2007, 02:00 PM   #6
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Re: new to the group - question/story

Hi Momhurts - I don't know where you live in Maryland....but if you find after seeing your new Pain Management person that you need another opinion, I can give you the name of an excellent pain management practice in Baltimore (not downtown...so that's a plus!). I don't think that you should expect to be given a prescription for any medication on the first visit. Some pain managements docs want to make the first appointment the one where they examine you, gather information, look at any reports or films you may have with you, etc. I know for me I wasn't given any medication at all and was told not to expect any until the second visit, if then. If you need more meds you may be told to contact your primary care or urologist until your next appointment. They probably want you to bring your medication with you so that they can see the date it was filled and count how many pills you have left. This gives the practice a sense of whether or not you are being compliant and following directions. It sounds like since you will come up short they may have some concerns about you being able to follow directions in the future. They will do a urinalysis to check for the presence of the medication (narcotic) that you say you are taking. This proves that you are actually TAKING the med and not diverting it to someone else. The urinalysis can also check for other narcotics that may be in your system that you haven't disclosed. I know it sounds like nobody trusts you, b ut you have to keep in mind that doctors need to be able to answer to the Drug Enforcement Administration for any and all prescriptions that they write. I hope none of this discourages you, although I can see how it could. Good luck on your appointment. I hope you find the relief you are looking for. Memere (Kathy)

 
Old 10-02-2007, 04:10 PM   #7
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Re: new to the group - question/story

i understand their practices/policies but it is a bit discouraging! My problem is getting into for the consult. I have a little one and they will not allow her to come along which I understand. So without having a lot of resources I don't know when I am going to be able to get in there. I have researched and found another clinic closer to me. Hopefully this will help with getting some daycare since I won't have to account for an hour plus commute. Should I undermedicate till I get in there so I will have the right count?

 
Old 10-03-2007, 07:10 AM   #8
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Re: new to the group - question/story

It makes sense that she didn't know what she is talking about, same way she prescribes some heavy duty medications for months and then just drops me. Where is the compassion these days? So it sounds like it may take a while to develop a treatment plan. What happens in the interim while you are on pain. Will they keep you on the same medications as my doctor has had me on? Or do they take you off? And if so do they at least ween you correctly?? Is a UA a urine analysis? What do they do that for? I am a little nervous about this whole thing. Especially since I have been taking more than 2 pills a day some days. I don't know if that's a big problem or not but from reading these boards it's sounds like the practice of pain management is helpful but scary!!!

Hi. Most PM practices have you bring in the medications that you are on, to see/verify that you are in fact prescribed those meds, who prescribed them, and that you are following the dosing instructions.
After the initial consult, they usually make some recommendations either for testing or for injections if they are going to do those, and prescribe a low dose med to see if it helps, and if it doesn't then they move on up the drug chain. Sometimes they will keep you on the same med, but you may have a problem by your having taken more than you were supposed to already. The urinalysis is done to check for other substances, to make sure that you are taking meds prescribed to you, at the right doses, etc.....most PM practices do those these days.
They also may make you sign a contract that states that you will only get your pain medication from them, that includes meds from your dentist, another doctor for the same or different condition, won't doctor shop,will only take them exactly as prescribed, etc. If you do any of those things, it usually results in immediate dismissal from the practice.
How many are you going to be short? It may not be as big a deal if it is one or two, but if it is more, then you might not be accepted into their program.
Sandi

 
Old 10-03-2007, 07:31 AM   #9
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Re: new to the group - question/story

I found another clinic in the area that teats specific to chronicc pelvic and IC...tha'ts a first. This was the initial clinic my urologist wanted me to go but my primary referred me elsewhere. They said they could see me today and they don't have a problem with me bringing my little girl to the consult either. I don't know if my docs can get a ref over there that quick but we will see. They didn't say to bring anything with me. There will just be some paperwork to fill out there. Can I still be treated if something other than medications work? Or are you saying they may not put me on medicine?

 
Old 10-03-2007, 04:26 PM   #10
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Re: new to the group - question/story

So I went to have my first visit with the PM today. I called the clinic this morning and asked for some info, she told me I could go online to see the overview of the practice. I was really encouraged to see this one as their treatments were also tailored to IC and pelvic pain. I called back to make an appt. I gave her the story that I was originally reffered to this clinic but my primary wanted me to go to another and that i was having trouble get into because of distance and daycare. She said since it was just a consult, she didn't see any problem bringing my daughter with me. So I was in a mad rush to get paperwork and refferals sent and believe it or not, they all got there in time. I was a little rushed and kept saying I couldn't stay long should I re-schedule and they insisted I stay and wait it out. After an hour the doc came in and spent 20 minutes with me! We talked I told about my medications...how I was taking them. He said everything was fine stay on course. He asked me to come back in a month and see about doing a nerve block. He gave me scripts to go home with. I had no count. He didn't even need to see bottles. No U/A and no contract. This is the opposite of everything! Do you think he is interested in treating pain or just giving meds? I don't know what I think. However now my issue is that I am going to run out of meds before I will be allowed to refill...yikes. I told him that i had meds but not enough to last until I saw him again, i also told him that I was taking about three a day when the directions said two. I don't know if he was listening...he never commented on that.

 
Old 10-04-2007, 05:52 PM   #11
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Re: new to the group - question/story

I know you are in Maryland but here is the doctor that saved my life in regards to endometroisis -- Dr. Jean-Giles Tchabo in Arlington, VA

My hysterectomy was done by another doctor and this doctor did the clean up afterwards. He literally scrapped my entire abdominal cavity in a 6 hour surgery. I have not had one ounce of trouble since this surgery in the early 90's.

Hope this helps. It might be worth the travel.

 
Old 10-05-2007, 05:25 AM   #12
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Re: new to the group - question/story

Thanks, Arlington is not that bad of a drive. So the doctors thought you had IC because of Pelvic and bladder pain. And then you had a cysto and they found endo on or around your bladder and that is when you went to this other doctor to get it cleaned up?? I will try and look him up. My cysto is scheduled for Tuesday at GWU.

 
Old 10-05-2007, 12:03 PM   #13
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Re: new to the group - question/story

When they did the cysto, my tube was blocked. The urologist was liked WOW what was that? And they began treating me for ic.

Pain increasing and very confused I went to Dr. Tchabo. He said, lets do a lap and possible opening up to fix any problems. On the day of the lap, he looked at me 20 minutes before surgery and said, I have been reviewing each and every medical record that we have collected from all the doctors you have seen and I feel strongly that we need to go ahead and just open you up completely. Scared to death, I let him what did I have to lose. He removed adhessions, separated my large bowel from the abdominal cavity, removed endo from the bladder, and scraped the entire abdominal caviity. He said after the surgery that he felt that my bladder tube was blocked with endo. I feel he literally saved my life and took away my pain. I can't say enough good things about him and highly recommend the man. He is a little hard to understand because of his accent but if I ever had a problem again I would fly around the world to find him.

 
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