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  • #31
    Originally posted by chasingbliss View Post
    My main IC symptom is pain - chronic bladder pain, urethral pain, and PFD-related pain. My interstims are controlling my frequency/urgency/retention, which is great, but I haven't been successful in controlling any pain. I have tried cystoscopy w/hydrodistention, various instillations cocktails, Elmiron (9 months), strict diet adherence, PT, acupuncture, pain killers from ultram to oxycontin, lyrica, elavil, etc. Nothing is helping with my pain. I have lived with this everyday for almost a year and it's taking such a toll. I just need to get control over it and am desperate to do whatever it takes.

    I am reading and reading the boards, looking over the alternative/experimental treatments and came across cytotec and want to know how this med works on pain as I no longer have other issues.

    Thanks for any info/advice y'all can offer. I really appreciate it.
    Hi Jen:
    I haven't been online for a year now as I've been busy at work and no time to do research. I have been diagnosed with IC for 3 yrs now and each year seems to be getting worse. Your post sounds just like me. I have had the same treatments as you and just undergone my second cystoscopy/hydrodialation procedure. This time the procedure didn't seem to take like the 1st time and my pain symptoms and frequency hasn't subsided to the point of comfort yet.
    My urologist hasn't offered any other type of drugs such as what I read on the posts. Perhaps these are only available in the U.S. I am from Canada, so I've not heard of such from my doctors. Hmm...I'm at my witts end as well, frustrated, depressed. Work has become a chore to try to get to. Have been on sick leave since end of August and they are pushing me to get back. I work in an office, but spend more time in the washrooms than at my desk.
    Last edited by Karen12; 11-04-2009, 04:40 AM. Reason: add

    Comment


    • #32
      Hi Karen,

      Sorry to hear that you have been getting worse. Are you following the diet? I also have had trouble getting appropriate control of my symptoms, but I also do not always do as I should, and on those days things are much worse. I never did a cysto/hydro. I have had a regular cysto just to make sure that there wasn't anything else going on. My bladder looks pristine with a regular cysto, but you usually can't see the irritation without doing the hydro. Anyway I am very sensitive to meds and diet. As the things that are suppose to help sometimes hurt. The one thing that has helped me alot is Ativan (Lorazepam) which is a benzodiazepine which helps relax the muscles for me at betime so that I can get a good nights rest. It also helps a bit with the pain. I only take it at night though for sleep, but it can be taken throughout the day, but it can make you drowsy so you'd have to see how it affects you. Sleep is very important. Without it it's hard to get through the day especially if you are in pain.

      Here is an article about Cytotec that Jill put on the boards quite a few years ago:

      http://www.ic-network.com/forum/showthread.php?t=11587

      I hope and pray that you (we) find relief from this hideous disease.

      Hopefully your employer can understand your situation. It is difficult to explain and even more difficult to understand if you don't have it.

      Another medication that may help if you haven't already tried it is: Prosed, or Urelle. These help by numbing the bladder. You can take it everyday. It can be quite expensive. I also drink baking soda: 1/2 tsp in 4 oz of water up to 3 times daily, but do not do this if you have to watch your sodium intake or have high blood pressure. I do not have this problem. It helps to quell bladder flares. FYI it doesn't taste great!! You could also do Uristat or AZO which is usually sold in pharmacies for a couple of days to help take the edge off, but this med can't be used long term as it builds up in the system. At least you could have some time without pain!!! Well that's all I've got for now. Hugs Di

      Comment


      • #33
        Karen - thanks for the reply. I am right there with you. And lately it's just been pain, pain, pain, pain. I am actually booked to see a rheumatologist next Monday to rule out fibromyalgia b/c my entire body - every muscle and joint - has been aching and screaming for months now and I am scared that I now have fibro on board.

        glassd18 - Someone else recommended Ativan to me b/c I am having a horrible time sleeping. I am going to talk to my pain doc about it next week when I see him. You are right. When you're not sleeping, the pain is 100 times worse.

        I wish some little bit of relief to everyone.....
        Namasté,
        Jen


        "Just when the caterpillar thought the world was over... it became a butterfly."


        * Diagnosed w/IBS in 1989
        * Diagnosed w/IC on 11/14/08
        * Tested positive for Celiac Disease on 11/6/09; awaiting lower bowel biopsy on 12/2/09
        * Labs taken to test for Fibromyalgia on 11/9/09; awaiting test results

        IC DIET 24/7 - No gluten, no dairy, no sugar, no caffeine, no alcohol
        Current Vitamins/Supplements:
        Cal-Mag-Zinc; Vit D; Sublingual B12; Gentle Iron; Flaxseed Oil
        Current Treatments:
        Interstim Implant Trial 3/17/09; Perm. 3/31/09; Revision 5/12/09; 2nd Revision 8/18/09; 3rd Revision 9/8/09; 4th Revision scheduled for 11/20/09
        Physical Therapy 1x/week - Myofascial Release/Trigger Point/Pelvic Floor/TENS
        Current Meds:
        Uroxatral - 10mg 1x/day
        Dexedrine - 10mg 1x/day
        Oxycontin - 10mg 3x/day
        Percocet - 5mg 2x/day
        Topamax - 25mg 3x/day
        Tramadol - 50mg 2x/day (as needed)
        Continuous birth control (to limit cycle flares)
        Discontinued Meds/Treatments:
        Elmiron, Urelle, Detrol, Hydroxyzine, Prosed, Elavil, Tofranil, Voltaren, Flomax, Neurontin, Norco, Darvocet, Lyrica, Fentanyl patch; Acupuncture; Rescue Instillations
        Things That Help Me Forget My Pain:
        Henry the Heating Pad
        Warm Baths
        My loving husband & stepson
        My dear friends
        Cuddling w/my beagle Hazel

        Comment


        • #34
          [QUOTE=chasingbliss;514537]Karen - thanks for the reply. I am right there with you. And lately it's just been pain, pain, pain, pain. I am actually booked to see a rheumatologist next Monday to rule out fibromyalgia b/c my entire body - every muscle and joint - has been aching and screaming for months now and I am scared that I now have fibro on board.

          Karen,

          My DO has me on a low Oxalate diet for my fibro and I can tell you it has gotten a lot better since I have been on the diet. You might want to check it out, Oh it is also helping my vulvodynia a ton too!

          hugs and blessings
          MARY


          Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

          Comment


          • #35
            tried different urine test

            My osteopath suggested a different urine culture test. The Broth test. We figured what have we got to lose. Mine came back strep –group D strep to be exact. I have been on amoxicillin 250 mg 3x’s a day for almost a month now and my pain is going down. Is it gone? No- but I no longer need Tyl3.

            My urologist was not willing to try it. There wasn’t enough research on it. But, all I know is that I am feeling better. We figure 3 months on amoxicillin. 3 day break, test again and 3 more months on amoxicillin after I have no more bacteria to make sure it doesn’t come back. I read that one lady had multiple bacteria present in her bladder and another had layers of bacteria. Each test came back with a new bacteria.

            An interesting thing is the lab does both the dry test (agar plates done in every hospital lab) and the wet test (broth culture). My dry test was negative and my broth test was positive. Science alert: one is gram negative bacteria and one is gram positive bacteria. It just makes sense that if the bacteria like a place that is warm and moist that it would show up on a culture that is also warm and moist.

            Go to http://unitedmedicallab.com/form-data/services.html

            It costs $120 for the test & the analysis of what will kill it.

            I would also recommend physical therapy to everyone. Make sure the PT person (mine was female) specializes in IC / pelvic floor pain. And, my insurance paid for it.

            IC causes the muscles to shorten b/c of the constant pain. Just like you want to curl up into fetal position, so do your pelvic floor muscles. This pulls your hips out of alignment. The other thing IC does is it causes your connective tissue to harden. My PT would do myofacial release at trigger points, - break the adhesions between skin and muscle.

            Good luck ladies - keep looking for a Dr. to listen.

            Einstein said "Insanity is doing the same thing over and over again and expecting different results."

            Comment


            • #36
              STOPPING NSAIDS with IC

              Originally posted by chasingbliss View Post
              Karen - thanks for the reply. I am right there with you. And lately it's just been pain, pain, pain, pain. I am actually booked to see a rheumatologist next Monday to rule out fibromyalgia b/c my entire body - every muscle and joint - has been aching and screaming for months now and I am scared that I now have fibro on board.

              glassd18 - Someone else recommended Ativan to me b/c I am having a horrible time sleeping. I am going to talk to my pain doc about it next week when I see him. You are right. When you're not sleeping, the pain is 100 times worse.

              I wish some little bit of relief to everyone.....
              Hi Chasing Bliss,

              One of the things I notice on your medication profile is that you're on an NSAID called Voltaren. Cleveland Clinic vehemently opposes using ANY NSAIDS because even one dose can cause irreparable damage to the bladder lining. (of course, I am not a medical practitioner and I can only share what Cleveland Clinic has told me). But recently in a Group Shared Appt., Dr. Rackley discussed the implications of even ONE dose of anything considered an NSAID. There are quite a few medications considered to be NSAIDS and I know from my own experience when I first saw Dr. Rackley the first thing he did was STOP all meds that were NSAIDs. At the time, I was on 800mg of Ibuprofen for pain and something else that had a narcotic and and an NSAID. Here's a link to a list of NSAIDs: http://www.lyberty.com/encyc/articles/nsaid.html

              Are you on Voltaren for IC pain? If so, I'd speak to whomever is prescribing it and I have an article that was sent to me regarding the use of NSAIDS. If you will email me I have the whole article that discusses a case study. But here is the important part the legitimates STOPPING ALL NSAIDS when you have IC.

              Differential Diagnosis

              As previously mentioned, the diagnosis of IC/PBS is one of exclusion. There are a number of conditions that must be considered in the differential diagnosis of a patient with possible IC/PBS, including:

              * Urinary tract infection
              * Overactive bladder
              * Endometriosis
              * Bladder carcinoma
              * Drug effects: cyclophosphamide, aspirin, NSAIDs, allopurinol

              Urinary tract infection (UTI), endometriosis, and overactive bladder (OAB) are relatively common conditions; the other conditions listed are rare but should be considered in patients with relevant findings, such as microhematuria on cystoscopy. Note that cyclophosphamide, aspirin, NSAIDs, and allopurinol are associated with a nonbacterial cystitis that resolves when the drugs are discontinued.5 Of course, two or more of these conditions can occur concurrently.


              I can say it took about a year for my bladder to get tolerable after stopping the NSAIDs. Though, I have good days and bad days like any other IC patient. I catheterize three to four times a day...so it can be quite intimidating and a lot to deal with, but there is no cure for IC, just comfort measures. I guess that is why we must all pray for more funding for research to find a cure. I KNOW in my heart that there is something out there that will CURE this horrible disease for us all and it just has not been discovered. That is why I continue to hold out hope.

              God Bless!
              Last edited by aprilchen; 11-14-2009, 03:45 AM. Reason: Additional info added
              Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.

              Comment


              • #37
                Hi April! Thanks for the info. I do need to go in and update my signature b/c I am off the Voltaren. I was prescribed that early in my treatment for my tailbone pain after my pain MD took some back x-rays and found arthritis in my spine. I took it for a while but discontinued after determining it wasn't effective in managing that specific pain.

                It's really good to know this b/c I had no idea! It's a bit disconcerting that neither of my urologists (previous and current) have mentioned this to me and they knew I was taking the Voltaren for almost 8 months. :-(

                Thanks again for taking the time to share this information with me. I really appreciate it. You're awesome! :-)
                Namasté,
                Jen


                "Just when the caterpillar thought the world was over... it became a butterfly."


                * Diagnosed w/IBS in 1989
                * Diagnosed w/IC on 11/14/08
                * Tested positive for Celiac Disease on 11/6/09; awaiting lower bowel biopsy on 12/2/09
                * Labs taken to test for Fibromyalgia on 11/9/09; awaiting test results

                IC DIET 24/7 - No gluten, no dairy, no sugar, no caffeine, no alcohol
                Current Vitamins/Supplements:
                Cal-Mag-Zinc; Vit D; Sublingual B12; Gentle Iron; Flaxseed Oil
                Current Treatments:
                Interstim Implant Trial 3/17/09; Perm. 3/31/09; Revision 5/12/09; 2nd Revision 8/18/09; 3rd Revision 9/8/09; 4th Revision scheduled for 11/20/09
                Physical Therapy 1x/week - Myofascial Release/Trigger Point/Pelvic Floor/TENS
                Current Meds:
                Uroxatral - 10mg 1x/day
                Dexedrine - 10mg 1x/day
                Oxycontin - 10mg 3x/day
                Percocet - 5mg 2x/day
                Topamax - 25mg 3x/day
                Tramadol - 50mg 2x/day (as needed)
                Continuous birth control (to limit cycle flares)
                Discontinued Meds/Treatments:
                Elmiron, Urelle, Detrol, Hydroxyzine, Prosed, Elavil, Tofranil, Voltaren, Flomax, Neurontin, Norco, Darvocet, Lyrica, Fentanyl patch; Acupuncture; Rescue Instillations
                Things That Help Me Forget My Pain:
                Henry the Heating Pad
                Warm Baths
                My loving husband & stepson
                My dear friends
                Cuddling w/my beagle Hazel

                Comment


                • #38
                  Re: tried different urine test

                  An interesting thing is the lab does both the dry test (agar plates done in every hospital lab) and the wet test (broth culture). My dry test was negative and my broth test was positive. Science alert: one is gram negative bacteria and one is gram positive bacteria. It just makes sense that if the bacteria like a place that is warm and moist that it would show up on a culture that is also warm and moist.



                  just wanted to add here, that I work in a lab and all our cultures done on plates are warm and moist. they are set up for optimal growth. I don't know anything about broth cultures, but I do know quite a bit about plate cultures I am glad though that you are getting better because of finding this. I will ask about it at work tomorrow. I would like to learn more about it.

                  Comment

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