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Uro "doesn't believe" in Pain Meds for IC

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  • #16
    Mary124 does your Neuronton effect your weight? Just wondering for the future and for my mom. I am on Warfarin for a bi-lateral pulmonary embolism last month and no one will touch me right now. I almost couldn't get them to even run any tests. My Uro finally saw how miserable I was and agreed to start testing after I was off the levonox shots and steady on the Warfarin. I just hope after the potassium test tomorrow I get some actual answers and am done with with beating around the bush. I really like my Uro and he has come well recommended in the Atlanta area. BUT, I have not been "officially" diagnosed yet and with the PFD and hysterectomy complications I have been a bit difficult.

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    • #17
      Stacie: Neurontin has never effected my weight. I have been on and off of it for years.
      Like you, most of my doctors won't touch me with a "10 foot pole" due to the valve issue (had replacement in 2003; since then been on coumadin and if I need surgery or procedures taken off and put on lovenox. This pain doctor like I said isn't afraid to do anything, its the patient that is! Like I said I probably would do the injections if my levels were ok- right now it ranges between 1.85 and 4.5 (I am suppose to be between 2.5-3.5)
      Besides this doctor my Uro will do a hydro once or even twice a year depending on all of this.

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      • #18
        Azo

        My Uro says you can't say on it indefinitely. He made me stop after 2 weeks. Better check and ask.

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        • #19
          Hi this is only my experience but I was turned off of UROs for good when I went to one when first I was diagnosed by my OBGYN. I was told in no uncertain terms he would never give me pain help. "go see my family Doctor" I did and received pain meds to help me through the worst. I'd like to hear anything good about a urologist because I think they all stink and I must be wrong. All Doctors must follow guidelines about narcotics. Who died and left them exempt from helping with pain! I want to change my mind about them as one bad experience does not mean they are all bad. My mind is saying be sensible, my bladder is angry and saying it makes no sense not to receive help from one who should understand how awful the pain is when we have IC. My apologies to the Good kind Doctors who do their best to help us. Hugs, Ziggy

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          • #20
            Ziggy, I personally know one physician who was reprimanded by his licensing board for prescribing "too many" pain medications. He's a wonderful family practice physician and I would have no hesitancy in going to him for treatment. What he does now is to prescribe short term pain control pending referral to a pain management specialist.

            In my 36 years with IC, I have now had four urologists. The first treated me for thirty years and I miss him sorely since he retired. The next was okay, but didn't listen too well and I was not disappointed when he retired two years later. My third was great and I would be still seeing her if she hadn't moved out of state. Just last month I saw my fourth for the first time. When he walked into the treatment room he had reviewed my huge chart and was aware of previous treatments. He did prescribe pain medications for my recovery period from a hydrodistention. I hope he doesn't even think of retiring for a long time.

            Yes, there are some wonderful, caring urologists out there. I personally know of at least three and a "sort of" fourth.

            It's important to realize that physicians have specific privileges and they can't stray away from them without risking license problems. Pain management specialists are specifically trained in their field and their privileges include the managment of chronic pain.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
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            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

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

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            • #21
              Thanks Donna. I needed to hear that. It is trial & error sometimes finding a good Doctor. I live in a rural area with few choses. I do have a most exceptional Family Doctor. You have had to deal with IC a long time. Having good Doctors must have felt like a Blessing. So many on this site still need to keep looking for help. It bothers me when they say they don't get help or at least advice where to find help. Although I am a mature woman I felt like a child lost in the woods when it hit me. Your advice has helped me often. Hug, Ziggy

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              • #22
                My uro was pretty good about prescribing me pain meds, but I feel like I don't really have an understanding of the extent of the pain management options that are out there. Is there something beyond vicodin and tramadol? I'm sorry your urologist wouldn't even let you TRY something stronger, that seems crazy to me. My urologist talked about "staying ahead of the pain cycle" and actually encouraged me to take vicoden after my recent hydrodistention w/capsaicin instill. He seems to believe that a lot of the IC problem is caused by the vicious self-perpetuating cycle of pain and muscle spasms. Basically, nerves that have gone crazy. I guess thats why he does the capsaicin instill.

                I don't know what I'd do if I never realized that tramadol helped me. It's such a relief to know that SOMETHING can help at least a little bit! The worst IC flare I ever had I spent the night in a Spanish ER and was only able to sleep for more than 20 minutes when they finally had mercy and gave me some tramadol. They had been giving me less effective pain medications for the previous 8 hours which hadn't affected me at all. With the tramadol, I slept for an hour which at the time was like being in heaven. I hope you can find a uro who understands the severe pain that comes with IC that literally requires pain meds to be alleviated.
                IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
                Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
                Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

                Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
                Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
                Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
                Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

                Comment


                • #23
                  For me the deciding factor for a doc is not if he/she doesn't feel comfortable prescribing pain meds for IC but if he/she believes that IC is not painful. My gyn provided me with pain meds for about 8 months while getting diagnosed and into a good uro. I tried many treatments over time and did eventually go to a pain management doctor. My uro would not give me a referral because he did not believe IC was painful so I just called the PM clinic myself and told them the situation and asked for an appointment. I got one. I would think a family doc would give a referral to PM as well if needed. I now have a great uro ( even though he won't let me do my instills myself at home).

                  So, I agree to try other treatments and don't just settle on pain meds but don't be afraid to go to pain management and ask them to be minimal in what they give you while you try other things. Patients have a right to demand pain control. If what you are doing isn't helping then the doc has a responsibility to try something else or send you to someone who will. Good luck!!
                  Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
                  _____________________________

                  DX: IC - November 2002 after hysterectomy
                  Interstim implanted March 2006 - died May 2011
                  Interstim replacement June 2011
                  Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
                  Docs: Pain management doc, urologist, family practice

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                  • #24
                    yup, had the same trouble here with my first one..I was told "other people live with it every day, you can too..I would never prescribe you medications, you are to stop the meds your GP prescribed for you and deal with it"
                    suffice to say I turned on my heels in tears and left his office, never to return again..my GP wrote a nasty letter to the office and told me she will treat it as long as she can, and that if things get worse or change in any way, she'll refer me to a different uro for consult/treatment..
                    I had no quality of life, depression, you name it..IC diet alone was not enough for me..I am VERY glad my GP prescribed some meds for me, as we were TTC, and it made it manageable for the most part (minus hormone flare ups)..
                    seek another uro, for sure! that one is not the best option for you and your health from the sounds of it

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                    • #25
                      Just curious, what is the anti candida diet? I have been strictly following ic diet for 1 month and my symptoms are only slightly better. I tried elavil which worked but had to stop due to heart palps........so disgusted about finding something that helped and had to stop. I also tried Gelnique for frequency.......did nothing. I am going to try Detrol. Anyone try that yet. I am so scared to try all these meds. thanks for any info you could give!

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                      • #26
                        Anti-candida diet is basically a diet that is supposed to help fight an infection of "candidiasis," basically a whole body yeast infection. Don't ask your MD about it because they don't believe it exists. I don't know if it does either! My acupuncturist told me to do it because she believed I has candidiasis, since prior to my IC I had taken tons of antibiotics for different infections.

                        In an anti-candida diet, you cut-out all things that "feed" the yeast, so all sugar of any kind (no pears! no carrot juice!), no carbohydrates (although I didn't do this, i still ate oats/quinoa/rice) You basically just eat meat and vegetables. I tried it but it didn't do anything except make me depressed. :-/

                        It works for some people with IC symptoms, because apparently yeast infections can cause IC symptoms, or people are allergic to sugars or something. Some people have to stay on it forever. :-(
                        IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
                        Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
                        Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

                        Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
                        Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
                        Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
                        Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

                        Comment


                        • #27
                          Dani,
                          What symptoms are the worst Pain? I have pain as my bladder fills each and every time and so I go like 20x a day. The elavil helped calm my bladder but gave me heart pounding. I am trying the Imiprimine but that seems to give me an irregular heart beat too. Its so discouraging. I am going to try the hydrox just to see. Its maddening how we develop these things and its funny 2 months ago I never heard of this. I woke up one morning and really thought I had a UTI. I have had OAB for a few years but it wasn't out of whack like this. The smalles amount of urine aggravates my bladder. I am strict on the IC diet but still have that sensitivity. Why is tramadol bad for you? I tried one today and it helped a wee bit so I may try it again tomorrow. I don't get any ill effects from that one at least. I am scared of the Elmiron because of its a blood thinner and I am prone to nose bleeds especially in the dry cold season, so debating on that one. talk to you soon. thanks for sending me info on the diet.

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                          • #28
                            I think I'm similar to you- I have the worst pain as my bladder fills. It seems like every time I drink something, it goes immediately to my bladder and I immediately need to pee it out! I pee between 20-40xs per day. And the longer I hold it the worse the pain gets. But now its gotten to the point where my bladder itself just hurts, so sometimes it hurts to move that area and even walk.

                            Elavil worked pretty well for me too, and when I was taking it regularly I was able to pee every 45m-1hr which was awesome. But it had very strong effects on me, so strong that I woke up at 1pm every day feeling like I had a hangover. And that was only with 12.5 mg taken at 7pm the night before! Imiprimine caused me to have trouble urinating, so that was not a good replacement. Hydroxyzine definitely helps me sleep, but also makes me feel exhausted all the time. Tramadol really really helps my pain. It's basically the only thing I have that I can actually use to control my symptoms instantly. I say its "bad" because it is an "opiod analgesic" so its pretty heavy-duty. It can be habit-forming, causes constipation, and can have reactions with other meds (like elavil, SSRI anti-depressants, welbutrin, all of which I take). I'm afraid to take it too much because I don't want to become dependent on it or have adverse reactions.

                            It is totally crazy how IC just comes down upon you! I had a bladder infection last year around this time, got over it, and everything was fine. Two months later I had another one and I just basically never got better from that one! I've been suffering with this since December of 2010, but I didn't realized IC was my problem until February 2011. I really hope you can get over yours more quickly!!! Its frustrating how all the meds for IC seem to require a trade-off, isn't it?
                            IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
                            Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
                            Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

                            Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
                            Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
                            Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
                            Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

                            Comment


                            • #29
                              Dani,
                              Thanks for replying so quickly. These meds are tough on our bodies. I am going to try the hydrox and take it very early at night. How many milligrams did you take initially? Have you thought of trying Elmiron, I am not sure if I am yet. I know you said the elavil made you feel like a zombie but that will lessen with time. I wish that was my only side effect because it really helped the spasms but the heart pounding was too much and it was only 25 mg. I tried to cut that in half but it didn't help the symptoms. Everyday we learn something. I thank God for this forum and all the nice people here that want to help one another. Have a good night.

                              Comment


                              • #30
                                Yeah I've learned a few more helpful things just tonight here, yay! For the hydoxyzine I took half of the pill...so I think 10mgs? I think I'm just really sensitive to most meds. I took Elavil for at least four months, could never get past 12.5 mgs a night, and felt like I was coming out from under a rain cloud when I stopped it to try other things. I recently started Elmiron and I am happy to say I don't have any side-effects. So far it seems like the best med I've taken (except that it isn't helping yet, haha) but compared to everything else that has given me dry mouth, constipation, fatigue etc. its great. If you can afford it I would just start it now. I sure wish I could've started sooner, but I only recently got some financial aid. All the best to you, good night!
                                IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
                                Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
                                Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

                                Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
                                Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
                                Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
                                Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

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