conintuing pain management

[momw/ic]

Well, I had my second pain management appointment today and I am still so totally sold on it. Everyone who has IC deserves to have this kind of treatment if they need it. Before I went a month ago my pain level stayed at about a 4 and that was since my botox. Before that is stayed at about an 8! Anyway, since the pain management regimine my pain is virtually nonexistent. It is there but then I take a break through med and it completely cuts it. That has never happened before. My doc is so validating and I no longer feel like I have to defend myself or make my pain seem better than it is. No one there thinks I am up to no good AND not one person has told me to "just take advil" like my uro's main nurse!! I highly recommend pm to anyone who needs it and if your uro won't refer you then do like I did and refer yourself!!

Pam

[Jessica12974]

Hi! Good for you!!! That is what I want to do! Refer myself to a pain management doctor. I myself am tired of trying to suck it up and try not to complain about the pain and make it better than it really is. I am suffering and just want to live my life pain free and comfortable. My urologist does not like to prescribe narcotics and when he does it is not too often or with very few refills. I looked in the book of providers that take my insurance and found a name of a PM specialist. But I am hesitant to call because I feel like unless my urologist refers me they are not going to understand why I am needing PM. I find that most people never heard of IC or they don`t understand it. Can you give me suggestions of what to say or what did you say when you called to schedule the appt.? Thank you so much!

Jessica

[Sarojini]

Definitely. I agree! Before I moved to where I am I had a uro who was very caring and also associated with a pain management person... so my pain was taken care of. However, when I moved, it took me FOREVER to find someone who'd continue the regimen that helped me, and was actually thrown into full-on withdrawal because I'd been on long acting narcotics (MS-Contin) and two very cruel doctors said "That's too strong for you, it's JUST YOUR BLADDER, for heaven's sake..." and told me to quit my pain meds cold turkey! I have never been sicker.

Finally I found a wonderful uro about 45 minutes drive from here -- he was willing to manage my pain and worked out an even better regimen with me. However, he (and my previous uro from my old city) referred me to a pain clinic closer to my home/work. They both assured me the clinic understood IC pain and they were right --- the clinic is GREAT. I'm also happy that my uro would do pain care if necessary, but that he found this clinic closer to me so that I'd be able to go to it for my monthly appointments without the 45 min drive.

:)

I definitely recommend a pain clinic -- however, I do think that you should discuss your pain with a doc who knows you, so that he/she can refer you to a clinic that deals with your specific type of pain... and also, I think you should do your own research as well and call the clinic beforehand and ask what their views on IC and pelvic pain are. Some pain clinics are inexperienced in treating pelvic/bladder pain and end up either refusing to treat or treating inappropriately. However there are many out there that know and understand what IC is... so check them out and I hope you find the perfect one for you :)

[K9wife]

Your stories are so reassuring! I have my first consult with a Pain Management group after living with IC for years.....a bit apprehensive but cautiously optimistic. After so many years of Drs just patting me on the head and saying "There's nothing we can do," I came to truly believe that theory....it's good to hear now that we don't have to live quietly suffering in pain.

[mandyleija]

Hi i Just wanted you to know I made a appt. with Dr. Wiygel her in Memphis!!! I have one the 5th of next month. I also i referred myself to a pain clinic too!!! Between one of them hopefully i can get some help on trating this IC. Also my PC told me she thinks i have Fibromyalgia. I have had migranes lately and hurt all over. I went to see a neurologist but she bascisally told me it was in my head and refererred me to a psyciatrist. I didnt go. It made me more mad!!! Hopefully I will get some help soon. Thanks for telling me about this Dr.!!!! Amanda

[Imustpee]

How do you find a pain managment clinic?

[tbokay]

what do they do for you? what questions should I ask if I go to a pain clinic?

[momw/ic]

My uro and I had discussed pain management and said he would work with a pm doc but that he didn't mind providing me with my narcotics as needed. The problem for me was when I would call for refills it was his nurse I had to deal with and she made me have to beg and keep calling her back and told me to take advil. She even called in a refill on 40 pills only cut it back to 20. I just decided I did not deserve that! I went to the pm clinic that my uro uses. I called them ahead of time and explained the situation and made sure that they deal with people with organ type pain. This clinic requests your records from your uro themselves and the pm doc speaks to the doc that dx you whether or not that doc referres you. It has been the best decision ever for me and I recommend it to anyone who feels that they need it. I feel better than I have in 3 years!

Pam

[Portia17]

Pam

I can relate as I have been there. You are WAY BETTER OFF GOING TO PAIN MGMT. They know what they are doing and not afraid to give you meds to help you not make u feel u are a junkie

Go with the pain mgmt

Wishing you the best

Mary

[rhea]

I tooo love love love my pain management docs. I see an MD and his PA who is the BEST!! She is really involved in the IC community in this area and does lectures on ways to treat it at other md's offices. My problem is that most pain meds knock me out so it is hard to take them during the day. I am glad you are having a positive experience. Now if we could just get Babs RN's docs to refer her....

[Imustpee]

How do you find a pain mgt clinic?

[Portia17]

My primary recommended my pain doc for my husband 10 years ago for his back so I use her. You can ask your primary or if you have insurance, ask your insurance company or go search in the yellow pages in your area

[momw/ic]

If you have insurance you can get a list from them and call them until you find one you are comfortable making an appointment with. If your uro is willing he/she can refer you to one or maybe your primary care doc would recommend one. This sight has links to associations where you can look up clinics in your state. Also, most hospitals have physician locator services. Before you make an appointment with one make sure they are used to dealing with chronic pain patients with organ pain, internal pain etc. Not limited to spine, bones, muscles or arthritis type stuff. My pain doc has never had an IC patient but does know about IC and has a lot of patients with organ pain so he has been great. He says that organ pain is the most diffiult pain to treat - especially when the organ is also a muscle. Pain management is not for everyone and it is certainly a personal choice but it is worth checking out if you bellieve you could benefit from it. I was very nervous and had never taken many pain meds or been to a doc like this before but I do not regret my decision at all. Good luck with your decision! :)

[IC SARAH-CPP]

For a pain mgmt referral, you should ask either your uro or your GP and I think they have to refer you, at least in CA they do. It says it in the Pain Patients Bill of Rights. So that is what I did, however my experience was a nightmare. They were very nice and all but flatly refused to treat pelvic pain, and this is w/a well known provider that SHOULD have more resources. They only handled "back and neck" pain!! IT made me SOOOOOOO mad. Plus, the pain clinic didn't script meds, they only recommend to the referring physician what to script.
So now I am basically screwed. I have no other options for pain mgmt clinics and my doctor who scripts my pain meds now(ob/gyn) says she thinks they should only be until I "get better"!!! She is great about it, but she always says that and I think , "ok when am I supposed to "get better", cause it sure ain't happening now"
So there is my saga with the pain clinic.
Love Sarah

[Pain]

If you are lucky enough to have a pain management doctor, please enjoy it while it lasts as soon enough the misinformed government and medical practice regulators will see to it that virtually all docs that prescribe pain meds go out of business.

That being said, a pain management clinic is for someone who has severe, constant, 24/7 pain that can find no relief for it. I fit that description 100 percent. Sadly most pain docs have been fed info on IC (if any at all) from all sorts of "official" sources that the pain is only "sometimes" or comes in flares which is NOT TRUE for thousands of us. There are also many who have seen what I call "overactive bladder" patients who do NOT experience "pain" but only pressure and try to get that treated as pain. Take it from one who knows both well...the pressure of having to go is NOTHING LIKE the horrific pain of the bladder.

You should NOT be on a long acting pain med unless you DO have severe 24/7 pain that NEVER lets up. You should NOT be on long acting meds for "flare" pain or pressure sensation. Pain docs treat CHRONIC pain. Those with infrequent pain related only to flares s/b treated by their PCP or Uro with scripts for "as needed" pain meds. But sadly they are now all too afraid to write ANY scripts for pain meds.

It is up to EACH IC/Bladder patient with SEVERE 24/7 pain..like me...to EDUCATE the medical community as to the reality that many have 24/7 unbearable pain. As I've mentioned before, even this site, having pain management under "flares" seems to imply that it always comes and goes. Sadly for many of us that is NOT the case.

I just switched PCP's. I also had to go to two specialist with a 3rd coming up for UNrelated things and have had to undergo "why are you on this medication for IC which only has pain associated with it once in a while". "these meds are addicting and you must get off them at once". From docs treating my EYES among other things.

I think the IC community has done a poor job in some cases of separating "overactive bladder" from PAIN IC. MANY docs have heard so much frequency/urgency complaints but sometimes few PAIN complaints from patients diagnosed with IC but that seem to have more "overactive bladder" symptoms and now the two have become confused.

Anyway, not to minimize ANY pain...but there is a completely different set of challenges for those of us who suffer SEVERE PAIN 24/7 vs those who only suffer occassional "flares". Pain management is there to treat those with chronic ongoing intractable pain.

[Jessica12974]

Hi! I feel that I am in the same catagory as you 24/7 constant pain along w/ pressure too unbearable to function, somedays worse than others. I do have FEW days w/o pain but they are rare and I think I deserve more meds than what I am given for as needed pain! My as needed pain pills don`t last me that long and I have to suffer again making my pain harder to get under control once I am given another script which is not often. I WISH that I could see a pain management doc but my uro does not beleive in narcotics. I think I need a referral? He will give me scripts for a few Vicodin but it is once in a long while. If you have pain management, you are so lucky!

[Portia17]

PAIN

My pain doctor has been in practice for 15 years. My husband starting going to her in 1997 so I have no worries about that. I am sorry if has happened to you but as for this part of my life I know she is going no where

regards,
Mary

[momw/ic]

Jessica,

I just read your reply from Oct. 1st and my experience has been that unless your insurance company requires a referral you do not need one. Even if they do you can get the referral from your PCP but the pain clinic will get your records from the uro but he does not have to refer you or agree with you being there. Just a thought in case you wanted to try to get in with someone.

[SADoss2]

At what point did any of you start seeing a Pain Management doc? My gyn was treating me, but he got aggravated because we could not find the right medicine combo to help. His nurse called and got really ugly when I asked for a refill on my Ultram and told me not to bother making another appointment. I have started seeing a uro doc and am scheduled for a hydro 10/13 and an IVP 10/7. If these procedures don't help should I then consider a pain management doc? I have tried rescue instills, Elmiron, DMSO, Ultram and Lortab.

[Jessica12974]

To: Momw/ic

Thank you! I am going to call and get an appt. w/ a pain specialist. I know that my uro will not agree but I don`t need a referral w/ my insurance so who cares! I am tired of suffering in pain and begging for pain meds. I just hope that I can find someone who knows about and understands IC.

[momw/ic]

I get so tired of dealing with the "gatekeepers"! How can a nurse call you and yell at you and tell you not to bother making another appointment? I just don't get it. My uro's nurse told me I needed to get off the pain meds and take advil. When I found out that my uro had not recommended that and in fact does not mind giving me pain meds - I went for pain management. I don't understand how she thinks she can make medical decisions for me without the docs direction. And yeah - I have tried advil and it causes major flares for me! One thing I have learned in my years with dealing with my health is that you cannot rely on someone else to take care of you. You must take care of yourself. Research treatment options and doctors and make your own decisions. I also began seeing different docs until I found one that I was happy with. It took about 6 uros to go through but I found on (even though his staff is questionable). My advice is to keep hanging in there and don't be afraid to change docs (or add treatments like pain management) if you feel like you need it.