URGENT:Does anyone's bladder feel MORE irritated by pain meds?

[crkshnks79]

Hi all , I know I havent been here in a lonngggg time , unfortunately is was not because I was feeling better . I recently have had Lupus added to my regime of health conditions . That has been kicking my butt more then the IC however , until this last month . I have been having horrible bladder burning and PAIN. I have been on pain meds for a few years now , mainly in the percocet family . I have tried long lasting morphine and fentanyl in low doses , neither helped me much . Because of my having medicare now I actually have ins to cover oxycotin , which I have never been on . Im starting to wonder if pain meds in the oxycodone family irritate my bladder even more then it normally is irritated ? I actually took myself off my meds for a few days , to see how my bladder would feel ? It did feel better until withdrawal kicked in then it felt like someone set my entire being on fire so I started to take them again and now my bladder is burning . Has this happened to anyone else ? My pain management doc is not very personable , she just stares at me blankly on most of my visits. I see her every 3 months and we have an appt coming up on June 16 , I want to talk to her about this but in a way Im afraid that her ans will be " OK lets take you off of pain meds" which I dont think is a great answer because of my Lupus I have arthritis in almost all of my joints and my lumbar spine( which hurts like) . I dont have any pain free days , period, between my severe IC , Lupus , PFD , SEVERE pudendal nerve damage , and wide spread nerve damage in my general pelvic region. I need meds , I do more knowing that if I wind up hurting I have medicine to deal w it after activities , w out meds I shy away from life because I fear the pain I know is inevitable. So my 2 MAIN questions are : Does anyone else have this effect w pain meds and their bladder ? AND what do you think is the best way to approach my pain doc about this ? Thanks for hanging in through my long winded post lol and I appreciate any advice you guys can give me I consider all of you to be the best experts I have

[Melanie526]

I've wondered the same thing...it seems like any medication (specifically for bladder, over-the-counter pain med, prescription pain med, etc) makes my bladder worse...it's to the point where I'm suffering through pain, not wanting to try things b/c everytime I do, it seems to make it worse. : (

I can't even get my doctor to prescribe anything stronger than Ultram, which didn't help. So maybe something stronger would help, but all my doctor says is, "We can't give you anything else." It's frustrating b/c she knows I'm a very responsible person, yet she won't prescribe anything else (even when I'm sitting in her office, sobbing, telling her the pain is unbearable).

[crkshnks79]

Hi Melanie,
Ultram didnt do a thing for me either . Most of the other meds dont usually seem to effect me . Just the narcotics , maybe its just the percocets ? Idk this disease is so frustrating ! If your doctor isnt willing to help your pain , maybe you should try a pelvic pain doctor or a urogynocologist , both were willing to help me find different meds and treatments that helped me best . I know it can take a long time to get your pain adequately handled , in the mean time if it gets even more severe then where you are at now , there is always the ER . Before I found a doctor to treat my pain , I tried to hold on as bext I could but there were just some days I could NOT do it , and so I wne to the ER for pain management . They did treat me on several occasions and were very nice about it . Word to the wise though you cant do that very often , cause then they will label you a drug seeker , which is crap because you are in real pain . But once in awhile til you find a doctor that will help you would be ok. My old primary doctor did that to me as well , she'd sit there at do nothing while I was crying and begging for her to help me . I switched my primary and the new one would give me a few days worth of meds when I was in real bad shape. Staying w a doctor who watches you suffer will only build resentment for you and will not help you feel very secure in their expertise . I hope you feel better and find someone who will do the best they can heloing you feel better

[Melanie526]

I live in Southern Ohio, and we have one of the highest rates of prescription drug abuse in the country (I don't know if you watch Dr. Drew's show, but my town was featured on his show last night...it's sad)...since there are so many people in my town abusing pain pills, no doctor wants to prescribe them (even for people like me, who are in real pain). I am becoming very frustrated and angry. If I went to the ER, I would be shocked if they would prescribe anything for me b/c so many people go there trying to get drugs (and since IC isn't an obvious pain, like a broken arm, people are very sceptical...you know how it goes)...I'll see if I can find a pelvic pain doctor or a urogynocologist. I called Ohio State yesterday, but they said their IC specialist is no longer with them (and therefore they discontinued their IC study).

[sailawaygrl]

Melanie,
I saw a special on your area about the horrible abuse of pain meds. It is terrible and especially for those that truly need the pain meds. I wanted to add my experience with pain meds. I have tried almost all of them and I did find that the contins (ms and oxy) didn't do a thing for my pain, it was like I hadn't taken anything. I was not on a low dose either, my body didn't recognize them at all. While I was on the ms contin I went into withdrawals, not fun at all. The ONLY pain med that helps my pain at all is methadone, I know that med freaks people out but actually for pain management it is one of the safest there are. I recently started neurontin and have been able to reduce my pain meds somewhat, but I still can't stop taking them because the severe pain comes back with a vengeance. Unfortunately, it seems that for those of us with severe IC pain there aren't many options for relief. I don't want to have to take any pain meds but I am coming to realize that I have no choice.

I hope the both of you find relief and good Dr's to help you.

Sandra

[crkshnks79]

@ Melanie : I saw that special . It said how Ohio has the worse addict rate for pain meds in the country . Its ashame that that probably makes you automatically excluded for pain meds ... On the special I watched the tv people went to a " Pain Clinic" and all they needed was an picture ID and $ 200 dollars . I was like holy crap ! Is this for real ? Is it all of Ohio , or just certain parts , because as much as it might be a total pain in the a*^ to drive an hour or 2 , it might be worth it to be adquately treated . The first pelvic pain specialist I met who was willing to treat me w narcotics was almost 2 hours away from me , and the drive killed me , but he at least tried to help my pain and also had a HUGE selection of treatments to help the pain that were not medication based.

@ Sandra : I have been on Methadone for chronic pain , it helped me tremendously for the first 3 weeks and then just stopped working no one had an explanation for that . I was really bummed considering it had worked so well at first. Also I started to have pins and needles in my upper back w it . For the record it did not irritate my bladder though ...

[debbyakamom]

To anyone looking for great pain relief:
I don't know how on earth anyone can tolerate Methadone! I was put on it at the very end of a looooooong flare about 3 years ago. Although it did relieve my pain, as it is still an Opiate, the rest of what it did I would never want to go through again in my life!
It literally turned me into a "Couch Potato"! I put on 50 lbs! I had absolutely NO energy to do squat! At that point I decided enough was enough. I heard about a new drug called Suboxone. At that time it was brand new and used only to detox off of all the opiates I had been on for 3 years. During this time, I developed a new flare, nice huh?
But to my astonishment the Suboxone actually helped the pain!!! I was seeing an Addiction Psychiatrist for the Suboxone, (as at that time that was all it could be used for, detoxing) and I told him about what was happening to me and I was so depressed thinking I would have to go back on Opiates. He was so great, he raised my dose back up to when I started, and my first new dosage, I was just about pain free!!!
Now some of the Pain Clinics are authorized to give it for pain!! The FDA is trying to push its use for pain relief. And when you need to "come off" they slowly wean you down and you don't have ANY withdrawal symptoms like I had the first time around. Withdrawing from Opiates, even Percocet, which I was on is worse than any IC pain!!!!!!
Suboxone definitely is a Wonder Drug in my opinion.
I would definitely advise anyone who is afraid of Opiates to inquire at some, maybe quite a few, Pain Clinics about this drug! Believe me there are still some Physicians who don't even know anything about this drug. I do want to mention though, it still is a partial opiate, but it has "blockers" in it so you never seem to "need more" to get it's full effects as you do with straight Opiates. And they will wean you down very slowly it's not bad at all.
debbyakamom

[crkshnks79]

To anyone looking for great pain relief:
I don't know how on earth anyone can tolerate Methadone! I was put on it at the very end of a looooooong flare about 3 years ago. Although it did relieve my pain, as it is still an Opiate, the rest of what it did I would never want to go through again in my life!
It literally turned me into a "Couch Potato"! I put on 50 lbs! I had absolutely NO energy to do squat! At that point I decided enough was enough. I heard about a new drug called Suboxone. At that time it was brand new and used only to detox off of all the opiates I had been on for 3 years. During this time, I developed a new flare, nice huh?
But to my astonishment the Suboxone actually helped the pain!!! I was seeing an Addiction Psychiatrist for the Suboxone, (as at that time that was all it could be used for, detoxing) and I told him about what was happening to me and I was so depressed thinking I would have to go back on Opiates. He was so great, he raised my dose back up to when I started, and my first new dosage, I was just about pain free!!!
Now some of the Pain Clinics are authorized to give it for pain!! The FDA is trying to push its use for pain relief. And when you need to "come off" they slowly wean you down and you don't have ANY withdrawal symptoms like I had the first time around. Withdrawing from Opiates, even Percocet, which I was on is worse than any IC pain!!!!!!
Suboxone definitely is a Wonder Drug in my opinion.
I would definitely advise anyone who is afraid of Opiates to inquire at some, maybe quite a few, Pain Clinics about this drug! Believe me there are still some Physicians who don't even know anything about this drug. I do want to mention though, it still is a partial opiate, but it has "blockers" in it so you never seem to "need more" to get it's full effects as you do with straight Opiates. And they will wean you down very slowly it's not bad at all.
debbyakamom

Thank you for that info , I will def ask about it . Methodone didnt affect me as it affected you , I feel more sluggish on my current meds but it caused some other strange side effects . I was also kind of afraid to be put on M because I have been taken off my meds due to my old pain management stoped taking my old ins , so I wd HORRIBLY and was given Methadone to help wean me down .So in a way Im afraid that if I decide to stop taking pain meds , what could I take to handle wd if thats what I was using to help my pain . But I see that you said they wean you down w minimal wd affects , which is good . I am PETRIFIED of WD , the most horrible experience of my life ! Thank you for you advice , I will def keep that in mind when I talk to my pain doc as a option
Lauren