more pain with DMSO?

[windchaser]

i need to know how many people have had increased pain with DMSO, I called my doctors office today because he only gave me 30 lortab for a month so 1 a day. it is day 25 and i have 1 left and see him monday for my new script but i just had a DMSO on monday and the pain is excrutating, i asked if he could maybe call me in like 5 til i saw him on monday, they never called back so i called back and his nurse that gave me so much hell with the treatment on monday was the one to tell me that he said no to take my pain meds i had and ibprophen i cant take ibprophen it makes my bladder worse and then she asked about ultracet which i have a script for but im alergic, she told me that she didnt think i needed to finish the last 2 DMSOs and that she has never had a patient that had incresed pain with the DMSO. Well I do!!! so now my dilemma i have 1 pain pill left for 5 days and dont know what to do because i made an arrangement with him that i would not go to another doctor for pain meds and my GP wont give me even phynergan. but thank god the nurse said she could call in the phenergan just so damn frustrated :cussing::rant:

[Stacey65]

windchaser, sorry to hear that you are in so much pain. I tried DMSO about a year and a half ago and it made my pain worse, especially in my lower back if I sat for more than 20 minutes. It also made my urgency alot worse, I was going 3 - 4 times an hour and before that I went once or twice an hour.

[windchaser]

whats funny is that the nurse told me out of all the DMSOs she has done she has never had anyone with increased pain... I forgot to put that in above

[GriffsMommy]

I am totally shocked that the nurse said she has never had any patients have increased pain from DMSO. Even the patients who say they have been helped by DMSO usually say the first few treatments caused them increased pain before they saw improvement. I had six weekly DMSO treatments. Each time I had one I felt horrible for the rest of the day. I felt like I had the flu but just in my pelvis, very achy and painful. I was lucky that it usually only lasted the day of the instill and maybe part of the next day and then I just went back to my pre instill symptoms. I was never helped by them and dreaded them every week. My uro was very surprised that I did not have any improvement as he said all of the IC patients he had treated were helped by it. That is when he told me that I needed to see a specialist because he didn't know what else to do for me when a hydro and DMSO didn't work. You are not crazy, you are not the only one, DMSO does cause pain in a lot of patients and there are many dr's who refuse to use it and think it is horrible that it is the only FDA approved instill for IC because it causes so much pain. My current dr has never used it and was upset that I even had six treatments. I have done rescue instills for the past three months or so and they are very soothing unlike the DMSO. I hope you find some relief soon. :grouphug:

[windchaser]

thank god im not going crazy!!! I am going to refuse the nest treatment on monday until i talk to him and tell him what is going on and see what he would think is best and i am going to ask if he wants me to go to an IC specialist that is on the ICN list and hopefully it will get much better i pray!

[karen10]

Good for you windchaser!! I was hoping there was some other options you could consider because your story of coming away from the instillations in so much pain really grabbed me. It doesn't make any sense to me that we have to endure pain in order to heal our bladders!! I just don't understand how that helps. Hope your doctor is receptive, and hope you can figure out some other, less painful options! Good luck to you. :)

[ltlmiss]

If you are in pain, try to get up to the ER for some pain refief. DMSO's dont sound very convincing to me. Im sorry you are hurting! Get better real soon, ok? Missy

[windchaser]

the ER here isnt very helpful, i have been there not since diagnosis but also i made the agreement with the doctor that i wouldnt get pain meds from anyone else, so i dont know what to do.... ty all for your support at least i know im not the only one that has increased pain with DMSO now if only i could get adiquit pain management

[missychan]

I did DMSO every week for 6 weeks, then took a 3 week break, then 6 weeks again... did that for almost a year. They don't seem to have done any good for me, and the pain during and afterwards wasn't worth it to me. So yes... they DO cause more pain for some of us- for others they're a Godsend.

My uro would always give me a script for 30 Percocet 10's with every instill. I never needed that many, but at least she was willing to give them if needed. She's not big on pills, so if she offered (without being asked) a fairly strong pain med, you better believe it's only because she thought the DMSO may cause me pain.

I've changed Uro's now, because the above gal got "tunnel vision" and thought that the DMSO and Elmiron were my only options. She does "cocktail" instills for other patients, but for me refused to try anything but the DMSO. Since it was just making things worse, I found a new doc who has TONS of options for me.

Didn't mean to make this about me... I'm sorry you're hurting! Maybe it IS time for a new doc or at least a second opinion, just so you know what options are out there for you. What about a referral to Pain Management?

And as far as the "agreement" with your doc- I ran into the same problem with my former GP. He wouldn't give me adequate pain relief, but I had a contract with him that I wouldn't go anywhere else for meds.

In the middle of a horrible flair "after hours", I called and begged him for help- he refused. I immediately went to the ER, explained the contract to the ER doc, and told him I didn't want to get in trouble, but that I was in horrible pain and didn't know what to do. That doc gave me pain meds and told me to find a new doc... which led to my current GP who has been my saving angel! (What the ER doc said specifically: "My giving you this prescription is not against the law, but it IS against your contract. Your doc could very well drop you because of it, but I'm willing to give you the meds and let you decide what to do. You may very well end up looking for a new doctor, which sounds like that may be a good idea anyway...")

Could you have a talk with YOUR doctor and let him know that unless he is willing/able to help with pain meds, you're going to have to look for a new doc. Maybe if he understands how serious you are about it, he'll change his attitude.

Good luck!

Missy

[TerriT]

I wouldn't ask him if he wants me to see a specialist, I would make and appointment right away, then go to ER to get some medication. Tell them you are in the middle of changing doctors and see if they will give you enough pills to get you through to the appointment for the new doctor. I have a contract with my pain doctor, but I usually go to my primary if I have a bladder infection etc. My primary will give me a script for additional pain meds since the patch is not enough to handle the additional pain. I call the office of my pain doctor and notify them of the prescription, I have not had a problem.

I changed uros when my first one told me, "I don't know what good Vicodin would do?" My primary had asked me to have my uro take over my pain meds since he was the one treating my IC. I found a doctor who has participated in IC studies who is wonderful. He sent me to the pain clinic that I now go to. Thank goodness my primary was willing to help me until I found someone to treat me.

No one should have to suffer IC pain without help.

[windchaser]

yah the funny thing is i didnt sign a contrat it was verbal, and also i tried my GP she said she was not the one treating me and could not give me even phynergan! The nurse is supposed to ask the doctor again in the morning to see if he will do something she thinks he miss understood and though i was wanting a stronger pain med, the lortab 10 works just fine for me for now thank god but it does no good if im in pain 19 hours out of the day, also the nurse told me that this doctor only does the DMSO and that he would probably refer me to the IC specialist in his office, she thinks i need to do an inter-stim does anyone know how much this costs? i do not have insurance in the process of trying to get SSI. And also does it work for pain???

[mlzippy7]

I just sent you a pm about your last post. Please let me know if you have questions.
Thanks!

[darlene]

My uro never uses DMSO, and I am just fine with that.

[Claredale]

My uro causes it an "old school" treatment and she even said it was barbaric for people that have severe IC...which was what my regular uro did to me on 3 times for 6 weeks treatments. I know it helps some people, but it made mine worse. I should have definitely told him no when he wanted to try it the 3rd time. I was too scared that I was that he didn't think I wanted to cooperate. I now know that I have a right to say what is done with my body. Too bad it took me to be in my 30s to get that mindset!

T83

[hdb1982]

I have a written contract. When I signed they told me of I was in an accident or had an infection or something and another dr gave me any pain pills, I just need to call and get authorization for it. I have done it 2 times, once when I dropped the 27'' TV on my foot and had a bruise through the bone. It was after hours but I called the health line and asked for the uro on call. I sat in walgreens parking lot for 20 minutes waiting for the on call drs approval. She said it was fine and she would email Dr. Z. The next day Dr. Z emailed me and said I "scored mayjor brownie points by getting auth" I guess he called walgreens and verified what time it was filled and it was after the dr gave the okay. The second time was the begining of this year when I was on an IV drip of antibiotics for a bladder infection. His office was open when I got out of the ER and I got the okay. It was after that that he said since my condition wasn't changing, to where I need to see him every month for med adjustments, that there wasno point in me wasting a copay just to get my pain pill rx so he called in a 1 month supply with 5 refills. I asked when my refills were out if I needed to come in and he told me as long as I didn't need to see him just email him 1 week before I am due and he will call me in more refills. What I am getting at is call the office and see what the rules are under you agreement. Surly there are exceptions, if you had surgery or were in an accident or something. If they say no way can you get them from anyone else, tell them that if he doesn't give you adequate pain relief you will have no choice but to look for another dr and go to the er to get relief in the mean time. Put something in writing if you can and make sure a copy is put in your med record. See, if I violate my contract it not only"black balls" me in his clinic from getting pain meds but from WVU hospital entirely. Unless I had surgery or was in a major accident. They put a big yellow sticker on front of your med record that says "this patient vioated a narcotic contract from dr??? on whatever date. This prohibits any WVU dr from giving you pain meds. Around here 75% of drs are WVU drs so I would be pretty much screwed if I violated mine. My pcp wouldn;t even be able to help me. IF he isn't helping you he can't stop you from being helped. I know it isn't helping 100% what he gives you but so any IC patients go without any pain relief. So just make sure that if you are going to go somewhere else I would make sure they give IC pts pain medicine b/c you could find yourself with a new dr who gives nothing. Then this dr you see now will more than likely not help you with pain relief again. So please make sure it is what you thinkis best. I don't think it os ritght for any of us to be refused pain meds butit is thee sad truth. So sometimes something is better than nothing, I hate to say that I really do. I bet there are a lot of people here who would do just about anything for 1 vicodin a day. I couldn't function on that. No way I take 4 10mg lortab a day. Just think it through. Get your ducks in a row first. Get scheduled witha new dr whom you know will give you more pain relief, then dismiss this dr. That way if you do go to the er they can call your old and new drs and confirm what you are saying to be true, which I have known of drs in the er doing. I hope you get help soon. It is awful that anyone of us have to suffer in pain but we all do. If not everyday atleast here and there, me, I am in pain 24/7 even with the 4 10's a day that is why I m going to a pelvic pain specialist.

[GriffsMommy]

I'm sorry I haven't had a chance to come back to the thread. I'm glad you're not going to do anymore DMSO until you talk to the dr. You need to tell him how much pain you are in. Depending on what type of insurance you have you don't have to ask him about seeing an IC specialist. I have a PPO and it does not require referrals of any kind. When I started seeing my pelvic pain specialist he just asked for a note written on an rx pad sent over to him saying that the NP at my gyn's office was the one suggesting that I come and see him. He also told me that he feels that DMSO is not an up to date and good treatment. He said that he thinks so many dr's still use it because it is the only FDA approved instill but he said that he thinks it is too harsh for anybody with IC and was very sad that I had gone through the pain of having six treatments done. I hope you get some better pain control. :grouphug:

[Salsa]

I had a lot of pain/irritation after DMSO but only for a couple days. THe treatments didn't work for me.

I go to pain management.....I have a doctor who is very educated with IC and is very understanding. Maybe try that route?

[blondie19]

DMSO kills my bladder...during and after treatment. I am always hesitant to switch doctors because it means that I have to make someone new understand my history. But when I had my last cysto in December, my Uro had an emergency, so another doctor in the same offce did the procedure. When I went for follow up, he asked if the DMSO helped me. I told him no, so he did a heparin instill. It didn't hurt at all and I actually held it in for 1 and a half hours; unlike DMSO which I cried to hold it in for 15 minutes. I was scheduled for my 2nd heparin, but found out I was pregnant on the same day. So I haven't had any meds at all except Tylenol and Prelief. :(

I would definitely think about getting a new doctor. If I read correctly, you went back today. I hope all went well.

[bunnykinb]

It burned so much with the 20 DMSO I have had. The last was just as painful as the first. I could barely hold it 10 minutes and cried when I peed.

I had a heparin instill and held it for almost 2 hours. Good luck.

[windchaser]

ty all im really getting irritated with my doctor I drove almost an hour today to go talk to him about other options and i get there and he wasnt even there they said he had to go to another clinic grrrrr if i had insurance i would soooo go to another doctor....

[GriffsMommy]

Oh that totally sucks! If you had an appointment they should have called you to tell you that he wouldn't be there afterall. What type of dr's office doesn't even do that! I have to drive three hours round trip to go to my dr and I can understand how irritated I would be if I got there and had to leave without seeing my dr! Just being in the car that long is painful for many of us. I hope you get some help. I would ask about rescue instills since they are more soothing or look for a new dr.

[windchaser]

the whole reason i was going to talk to him was to ask him about rescue instill and maybe a muscle relaxant or valium to help lol It was a 2 hour trip round trip i was very upset and am going to call tommorrow and tell them that he had better call me back personally or i will find another doctor... im still steaming about it

[Bea]

dmso made me so much worse.. the pain was so excruciating.. I couldn't deal with it

[hottytoddy93]

i went extremely downhill after DMSO. if i had known what i know now i never would have chosen that. it does affect a lot of people adversely, but i would not rule it out because different people react different ways. you may want to gamble and take a chance on it. i was so desperate i would have tried anything. i suggest good pain meds and elmiron. elmiron takes a few months to kick in so be prepared to lose your job, then you can stop pain meds once it is working. TENS unit helps too for spasming. physiotherapist for PFD if you have that.

[windchaser]

im taking the elmiron currently and doc is giving me 30 pain pills a month but not near enough and i talk to his nurse yesterday which i called and asked to talk to him peorsonally and they put the nurse on the phone she was very rude with me and said that if i went to him with all this stuff from the internet that he would not be happy about it and basically told me that i had to deal with it til the elmiron started working....

[hoping4acure]

Hi It didn't help me at all...made me worse. Couldn't he of given you rescue treatment?

Good luck

[windchaser]

i mentioned the rescue treatment and that is what they consider crap from the internet
i am outraged i have to deal with the pain until march 10 and no other urologist will see me because they are all in the same office I dont know what to do the ER wont do anything and my GP wont do anything either.....

[hoping4acure]

Sorry....I missed that.

I hope you can find some kind of relief. I can't believe he wont at least give you something for pain. that stinks!

I would look for another Doctor!!

[hottytoddy93]

im taking the elmiron currently and doc is giving me 30 pain pills a month but not near enough and i talk to his nurse yesterday which i called and asked to talk to him peorsonally and they put the nurse on the phone she was very rude with me and said that if i went to him with all this stuff from the internet that he would not be happy about it and basically told me that i had to deal with it til the elmiron started working....

tell your dr or his nurse that is fine and you understand if he is one who doesn't like to prescribe severe pain medication. so then you INSIST on a referral to a pain specialist. your dr must give you a referral. it is your health, your life. ever heard of the hypocratic oath all drs must take?
they have to refer you if they refuse to give you what you need. don't take no for an answer! no one should have to go 18 hrs a day with pain. one pain pill day isn't gonna cut it. i was still in 5-10 level pain even with Kadian 3 times a day (morphine).

be positive. the elmiron will most likely work for you. it takes time. you should be able to easily wean off of pain med a that point. i don't know why some people get treated like they will become addicts. i don't even like pain meds. they constipate me and cause weight gain! but once the elmiron kicks in (2-3 mos), you can stop the pain meds. YEA!

[GriffsMommy]

Lauren has a great point, if your uro and your GP are not willing to give you the amount and type of pain meds that you need then it really is time to ask for a referral to a pain management clinic. You should not have to suffer. I remember when I only had 1 vicoden to take a day if that because my local uro usually only gave me 20 at a time. I tried for quite awhile to make do with that but it just didn't cut it at all. After finding my current dr and some time we have realized that my constant pain needs long acting pain meds and I can really tell the difference. I'm still in pain but it is less and much more managable now. I hope you can get some relief soon, I remember being in pain all day and waiting until the evening when I would get home from work to take my only pain pill of the day. Lord, that was no fun and I wouldn't wish it on anybody. :grouphug:

[windchaser]

I think what i have decided to do is to go to UAMS hopital i called yesterday and they said that there is a doctor there that will treat IC so we will see how that works out for me... I hope it does but have to call and get my uro to fax all my paper work to UAMS hopefully they dont get mad... but what ever and hopefully they can help me more then he is now... ty all for being there
:)

[Claredale]

Thanks for keeping us posted. I understand not wanting to make your doctor mad, but look at it this way...you are taking control of your health and trying to find what is best for you.

Hugs,
Tracey