Left Behind

[momw/ic]

Most pain clinics are going to want to do a long acting pain med and only use the short acting for break through pain. There are many others besides methadone though. It's just the cheapest. The one I take is a once a day pill and I don't have any side effects at all.

[abnormal]

So sorry that you aren't getting much help on the pain issues. I live in Canada and have a wonderful Family Doctor who has had me on long-term morphine, plus short=term morphine. I've found, in Canada, the URO's really don't like to write out prescriptions for narcotics, seriously. But if you can get one from your family Dr., it might work out better for you. Good luck and let me know how you make out...........curlette/Patty

My general practitioner's office (aka family doctor) has a no narcotic script policy . . .

(P.S. I'm a resident of the USA)

[curlette]

So sorry that you aren't getting much help on the pain issues. I live in Canada and have a wonderful Family Doctor who has had me on long-term morphine, plus short=term morphine. I've found, in Canada, the URO's really don't like to write out prescriptions for narcotics, seriously. But if you can get one from your family Dr., it might work out better for you. Good luck and let me know how you make out...........curlette/Patty

[abnormal]

I'm sorry you are going through this. I think so many of us who require pain meds for our IC have been through similar situations. It sounds to me like you might be ready for a pain management doctor. Do you have one in your area? Would she write you a referral? Pain docs are used to writing for pain meds and aren't near as scared of it as other docs are. Also, I printed off info from this site from Dr. Brookoff that talks about the IC patients right to pain control and took it to my first uro who was scared of pain meds and not sure I needed them. He prescribed them for me until I could get in with a pain management doc in the area.

I hope you are able to continue to get the help you need!

I have received a referral to a pain management clinic in the past. The clinic doesn't write for meds, they make a recommendation and then it is up to your doc to write you for whatever they see fit (whether they choose to follow his recommendation is up to them). He recommended my arnp write me for methadone (which she did, without hesitation). I took that for like three days and gave it up. It made me sick and sluggish. I needed help walking across my bedroom to the bathroom to use the toilet.

But you bring up a good point (and one I've been considering for a while) -- going back to the pain clinic (or asking for another referral from my arnp to get back) and seeing if they can/will help. Maybe I'll have to go back on the methadone and just be sick on top of the IC for the rest of my life . . .

[momw/ic]

I'm sorry you are going through this. I think so many of us who require pain meds for our IC have been through similar situations. It sounds to me like you might be ready for a pain management doctor. Do you have one in your area? Would she write you a referral? Pain docs are used to writing for pain meds and aren't near as scared of it as other docs are. Also, I printed off info from this site from Dr. Brookoff that talks about the IC patients right to pain control and took it to my first uro who was scared of pain meds and not sure I needed them. He prescribed them for me until I could get in with a pain management doc in the area.

I hope you are able to continue to get the help you need!

[abnormal]

I feel like I'm backed up against a wall with no way out . . .

My urologist's ARNP has been handling the majority of my case. Together we have tried many, MANY, MANY different medications, treatments, therapies, etc. Everything from Elmiron, to antidepressants, to two different medications in the form of instillations, to sticking a Valium up my vagina every 8 hours (which I dutifully did, even though I found it a bit ridiculous ). I did them all. I didn't ask questions (except those regarding how to administer the meds). I just took it and tried it and reported the results (including bringing pictures I took of the blood clots I dropped in the toilet after one of the instillation medications went a bit ca-ca -- little Quantum Leap reference lol).

So after several months of failed treatment/pain management attempts, she started writing me for Percocet. I didn't have to sign a pain contract (though I would have without a second question). I didn't have to beg to get refills. I was never made to feel small or like I was some kind of addict.

I have been on the Percocet for, idk, over six months now. It's improved my life greatly. Then at my last visit this uro's arnp revealed to me that she has been laid off. She thinks it's office politics (because she is, mysteriously, the only one being laid off). She said that none of the other docs in that office will write me for Percocet. (Which is something I experienced firsthand at the visit before this one, when the uro doc who is over her took her caseload for the day because she was out sick. He made me feel small, and useless, and like a doper because I asked for a Percocet refill. "This is the only time I'm going to do this, do you understand that?" Yes, Dr. Okay, Dr. I'm sorry, Dr. Would you like me to roll over and lick something now, Dr.?)

She gave me the number of another urologist in the area, but said she didn't get the "warm fuzzies" from that doc. She also gave me a number to another uro's arnp in the area. She said the patients of that arnp would follow her anywhere, which gave me hope . . . but she said she isn't sure how hands-on the urologist is going to be with my case in that (second) office (meaning she doesn't know if the arnp will be my primary caregiver like she was, or if the uro doc will be leading the way). She said she's pretty sure neither of the offices she recommended will write me for the meds I'm on currently.

So IDK what to do . . . I DO know what works for me. I also know what doesn't. We've tried everything short of bladder removal (which I told the arnp I wasn't going to consider, being that I'm 25 and ride the bus to get everywhere; maybe if I was 80 and had a car . . . -- I think that post is on this site somewhere still if anyone wants to look at it).

I feel trapped.