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  • Doc says no to pain meds

    Hi gals.
    Well, the nurse from my urogyne's office called me back and said that she talked to the doctor and that she said she does not prescribe any type of narcotics to her patients with IC. She said that she uses the instillations.

    I told the nurse that I was in a lot of pain and that there are days that I just wish I dont wake up anymore. She told me that I should go to the ER if I am having suicidal thoughts. I was thinking, yeah, so they can send me a huge bill right?

    I told her I was just trying to make a point of how much pain I am in. She said that the instills are the only thing that really works the best. She said the doctor said that if I was in this much pain, that I may have to do 2 instills a week instead of 1. I dont even know how I am going to afford the 1 a week to be honest. I just pray it helps. But the way it looks, even if it does help, they wont let you learn to do them on your own. They want to make money it seems.

    I dont know what I am going to do if these dont help or if the lyrica does not help. She does not seem to be offering any other treatments options in terms of pain relief. I have no clue as to where else to turn if this does not help as I am running out of options and cant seem to find any good Dr in my area who is knowledgable or willing to actually help the patient and not their pocketbook. Any suggestions?

    I go for the instill Friday. They did not even bother to bump up my appointment either. I mean how much time does it actually take to put in the instill? I cant believe they are that busy that they could not get me in sooner than Friday knowing how much pain I am in. This is ridiculous. I am so scared. God forbid if I should get worse or my bladder shuts down, I would not trust any of these doctors to care for me I dont think. This is scary. I feel so alone.
    Jen

  • #2
    I hope the lyrica will work for you. It does help some people with IC.




    Donna
    Stay safe


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    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      Jen, I'm so sorry you can't get pain medicine. I hope the lyrica will help you to and hope the instill. will help your bladder.

      Sending hugs, Trishann

      Comment


      • #4
        I'm so sorry. I understand your frustration, and I am angry with the medical system for failing IC patients.

        One doctor was successfully sued in California for failing to provide adequate pain management, and a lot of changes came about in that state because of it.

        Studies have shown that we literally have a healthcare crisis in our country as far as undertreatment (or no treatment) of pain is concerned, and that women are prescribed pain treatments MUCH less often than men are, despite having higher rates of pain and despite experiencing the pain more intensely than men due to biological factors.

        It's a huge problem - I know that's no comfort, to know you are not alone - but I have hope that it will be addressed soon, because people are becoming more and more upset about it. There are a LOT of chronic pain patients in the U.S., and a lot of other acute pain patients who are not being given pain meds like they used to be (following surgery, etc.) There is just BOUND to be a political movement soon, I think, to address this issue.

        Blessings,
        Lori

        Comment


        • #5
          Thanks for replying Gals.
          I agree that things need to change with our medical care. I just think it is so inhumane to stand by and let a person suffer in pain.

          I honestly hate taking any type of meds as I always end up with side effects, but the pain is really getting to me. I usually try to grin and bear it, but I cant take it anymore. I think doctors should be held responsible if they fail to treat a patient that is is a great deal of pain. There is no excuse. When I had my wisdom teeth removed, my surgeon was throwing pain pills at me, and I did not even want them. But here I am in agony and cant even get any type of pain med. What is wrong with this picture? I wish some of these doctors who refuse to help us with our pain could get this disease for a while and see how it is to live like this. I bet they would be taking all kinds of stuff for the pain.
          Jen

          Comment


          • #6
            I am so sorry about the pain meds. We all know you probably desperatly need them. I wish I could magically be a doctor and give you some. I wish we could for at least a few hours give our doctors our pain, they would write perscriptions so fast.

            I hope you can at least get a better doctor and keep bugging the nurse. Say you want to talk to the DOCTOR. At your next weekly appt. bring in material saying how narcotics are USED ALL THE TIME FOR IC. I know there are a lot of articles on the sight about it. Ask for Ultram, that is not a NARCOTIC. It is synthetic. You are the sqweeky wheel. Don't let them intimidate you or let you feel like your not in enough pain. YOU ARE. We are all behind you.

            May you pain be eased.

            Laura

            Comment


            • #7
              Thanks Laura.
              I actaully cannot take ultram, it caused my heart to race. Unfortunately there does not seem to be any other doctors in my area who are knowledgable about IC. This is the only doctor I know who offers the heperain,steroid,lydocaine,biorarbonate instills also. It is pretty sad that here I live in the big city (Chicago) and the care here sucks, and I mean for alot of illnesses. I have had no luck with doctors here at all. Yes, I agree, I really do wish some of these doctors would be stricken with this disease, maybe then they would be more compassionate and treat us humanely. It is terrible.
              Jen

              Comment


              • #8
                Big Change!

                Hi! I have been exactly where you are now only it was about 25 years ago when most doctors just thought everything was in my head! Now there is a patients bill of rights pertaining to pain mgmt. and even if you leave to find someone else I think you should send that to him and also send him the link to the ICN network! I believe what goes around comes around and maybe someday he will need something and you know what--no one will be there! Sorry about the tirade but you deserve better and all I can do is encourage you to find another and I know that is easier said than done, doctor. I hope things turn around for you soon--you deserve better. Hugs-Malone

                Comment


                • #9
                  I'm so sorry Jen!

                  What would the doctor do if they had a patient like me, who gets worse with instills? Just ignore me and let me get worse? Let me be screaming in agony because the pain was so bad?

                  I'm so angry right now....
                  http://www.TheCraftyEwe.etsy.com

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                  • #10
                    My first urogyno doctor also refused pain control, just pushed instills and pt, well the pt sent me into such flares, that after one session, I was hysterical, had been calling my dr all day and no one returned my call, then my husband came home (ex now) and called and the after hours dr. on call said to bad, if she is in pain tell her to go the ER. To say the least I left that practice and found someone who actually cried when I told her I was left in pain like that. Yes, the instills help, but they are not instant for me, so good luck, I would say in chicago, there has to be a better dr. for IC.

                    Comment


                    • #11
                      Have you tried a pain clinic? A lot of uros don't prescribe narcotics, but pain management docs generally will, if the pain is real. Which it obviously is, in your case.
                      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                      Wishing you happiness and good health, and all the best out of life.

                      Peace, Carolyn
                      ___________________________________________________

                      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                      On the Beach with IC

                      Comment


                      • #12
                        Jen, maybe you need to find a more IC friendly dr.? I think your dr. failed the test for bedside manner! My IC specialist tells me......."let me know if you need pain meds". Sounds like your dr. has run her course and needs to be put out to pasture! Good luck to you. I've had one instill in my whole treatment regiem and that was 25 yrs ago.......didn't work and I never went that course again. Roxie

                        Double Spinal Cord Stimulator surgery 8/09
                        Unsuccessful MiniArc sling surgery 12/07
                        Dx'd Hypothyroid
                        Dx'd Chronic Axonal Neuropathy & Myopathy
                        June 2007
                        Dx'd IC May 2006 (after suffering for 25+ yrs!)
                        First Cysto 1979
                        First Hydro 1981 (Many treatments since then!)
                        Collagin"Durasphere" injections for urethra
                        Gall bladder surgery Aug. 2004
                        Gastric Bypass Dec. 2004
                        Dx'd: Barrett's Esphogus July 2004
                        Dx'd: Vaginal Atrophy 2005
                        Bladder surgery 2000
                        Dx'd: IBS 2000
                        Hysterectomy (fibroids) 1999
                        Laminectomy 1989
                        Dx'd: Degerative Disk Disorder 1989

                        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                        Comment


                        • #13
                          Roxie: What is the MSM gel? Ignore my ignorance please, but I'm in Canada and was wondering if it was similar to zylocaine gel? Sounds interesting - please explain...and again, forgive my ignorance.
                          Weezer

                          Comment


                          • #14
                            HI no it's not like zylocaine. It's an anti inflammatory medication. Here's the website when I ordered mine and it can answer all your question. www.jacoblab.com If you end up ordering it.......please if you wouldn't mind.....put my name (Roxanne Busby) on the subject line with your order? I'm trying to work up to a full bottle in the new referral process I talked the company into. Thanks! Any more questions,,,,,,,, just ask! Roxie

                            Double Spinal Cord Stimulator surgery 8/09
                            Unsuccessful MiniArc sling surgery 12/07
                            Dx'd Hypothyroid
                            Dx'd Chronic Axonal Neuropathy & Myopathy
                            June 2007
                            Dx'd IC May 2006 (after suffering for 25+ yrs!)
                            First Cysto 1979
                            First Hydro 1981 (Many treatments since then!)
                            Collagin"Durasphere" injections for urethra
                            Gall bladder surgery Aug. 2004
                            Gastric Bypass Dec. 2004
                            Dx'd: Barrett's Esphogus July 2004
                            Dx'd: Vaginal Atrophy 2005
                            Bladder surgery 2000
                            Dx'd: IBS 2000
                            Hysterectomy (fibroids) 1999
                            Laminectomy 1989
                            Dx'd: Degerative Disk Disorder 1989

                            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                            Comment


                            • #15
                              Jen,
                              I really feel for you, the same thing happened to me yesterday! I was diagnosed 14 years ago and my Doctor in NY never had a problem giving me the Percocet when I needed it, now I have recently moved to SC and I called my doctor here yesterday for some percocet because I'm in so much pain and the nurse said he wouldn't give it to me...Now I'm in a panic because I've tried the instills and everything else and nothing works for me as well as the Percocet..I don't know what to do either, and I was wondering, for those of you who have been to a pain management clinic, how does that work? Do you just go in and tell them you have IC and they will give you pain meds? Or do they do tests, what do they do? I'd really like to know how that works..
                              Jen another thing you may want to try is, do you have a regular family doctor that you use? You may want to try going to that doctor for the pain med, my family doctor in NY is the one that had no problem giving it to me, none of the Urologists would give it to me. It's crazy how they will just let us suffer! It makes me so angry. Good luck to you.

                              Kari
                              Kari

                              I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

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