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  • I'm new and this is LONG sorry!

    This is my first post though I have been on many times.... I had bad bladder pain and urgency the drs kept telling me it was a bladder infection but then the culture would come back negative, I did some research and found this website and thought I have IC, went to a gyno he did a cystoscopy and confirmed the IC. He did bladder instilations which made my pain worse. I finally went to a different gyno and she confirmed the IC an also PFD she prescribed pyridium Which helps but if I don't have a really full stomach it makes me really nauseas. I started on elmiron but then it was out everywhere so she put me on cystoprotec which makes me sick. I tried amitrip. But I am already on anti depressants (citalopram) and they didn't work together I was more depressed and tired. Dr wants me doing Valium sup. Every night but they don't really help and are very expensive. My husband just changed jobs so we don't have insurance for 3 months so I can't do any more instilations which never really helped anyway. The only thing that helps is percocets which I would take half a pill a day and be in no pain and feel great but my dr won't prescribe them. I try to stick to the diet as best as I can but I am just fed up. I sat and cried infront of my dr and all she said was " ok see you in 3 months" I just want a good dr who actually gives a crap about helping me!!! So sorry this is so long but basically all I'm doing now is diet and pyridium but I am in so much pain. I have a 2 year old and feel like a horrible mom because I can't run around with her I just want to lay in bed all day and sleep. I also have insomnia which my new dr won't give me ambian for i have tried tylenol pm nyquil unisom benydrel.. Everything I can't fall asleep or stay asleep plus I have to pee 3 times a night at least. I'm sorry to rant on like this I just am feeling very depressed and hopeless. If anyone has advice id love to hear it thanks and oh about me I'm 25 married and have a 2 year old girl macie who I stay at home with I promise I'm really not always such a Debbie downer.

  • #2
    Elmiron is back 'in stock' if you were wanting to try it again.

    You're not a bad mom. The best thing you can do is take care of yourself. Then even if you only get to spend a little quality (not like general caretaking stuff) time you'll be able to enjoy it a little more and so will your child.

    Have you tried the IC diet at all?

    I can't help you with the insomnia though. Once I was through my first flare and feeling 'healthy' again my insomnia came back. It's all the stress for me. The only thing I can take to put me to sleep in Xanax. But I try to only use it once a week.

    My doctor told me he didn't think sleep aids would help me during a flare. Your bladder is like the 3rd most sensitive nerve centers on your body. If your bladder tells you you have to go short of being completely unconscious no medication will keep you asleep. That might be why your doctor doesn't want to give you an Ambien RX.

    I hope you start feeling some relief soon. Hang in there! *hugs*

    Comment


    • #3
      Elmiron is available again.

      I understand that you have already seen two doctors, but if you aren't comfortable with what you are being told, you might want to seek another opinion. My suggestion would be to see a urologist. If you scroll to the top of this page and click on "Professionals" you may find someone in your area who has been recommended by another IC patient.

      There are many different combinations of medications that can be used in instillations --- there might be some that would help.

      If you're not following the IC diet, I suggest you begin today. Some find that single step helps more than any other.

      Sending healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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

      Comment


      • #4
        Thank you for your advice, I do try to follow the IC diet as my husband is in between jobs we don't have insurance so I can't afford elmiron at $400 a month! I have been thinking I want to see a urologist so I am planning on researching and finding someone so in 3 months when we have insurance I can go. Thanks again!

        Comment


        • #5
          I soooo feel for you!! I was just diagnosed in June and it has been long rd. The urologist who diagnosed me is awful and pretty much said you have this take this here is a pamplet and then no support. I too was in tears this past fri and ended up getting in with my primary care the nurse there was familar with IC and soooo helpful. I am now going to see a urologist who specializes in IC as well as the staff. That is what you should look for so you dont waste anymore of your time. I found mine on incnetwork under doctors typed in my state and found them. I called a couple of places on list but this office made me feel instantly comfortable and were caring. That to me as a patient if very important. Hate calling a office and the front desk staff are cold and uncaring. I sooo hope for the best for you. I agree with Donna diet is a must. I fought with it at first (love my morning coffee so much) but I am sooo sick of the burning. For first time in a week I am starting to feel more like myself. I know it is overwhelming with the med thing and dealing with pain and finding a dr who cares. But we are all here for you!!

          KierD

          Comment


          • #6
            Thank you so much! You all have no idea how much this means to me, I have Been feeling so alone lately and my depression has really been getting worse. So to have somewhere to ask questions and talk to people is just awesome!

            Comment


            • #7
              I was diagnosed a year ago and I decided that i was going to take the least amount of prescription medicine's as possible. I feel you when you say you feel like staying in bed all day and feel guilty for not being able to play with your daughter. I have 5 kids and it was a very hard year. I take glucosamine msm because i read that it works like elmiron without the cost and side effects. I take it twice a day and i feel it started working after about 4 mos. which is very coincidental because they say that is about how long it takes for Elmiron to kick in. Here's a list of all of the things i take. Hope this helps. Hope you feel relief soon.

              Wellbutrin XL -a.m.
              Glucosamine msm -a.m. and p.m.
              D-3 vitamin -a.m.
              probiotic-a.m.
              1 tsp. D- mannose powder (due to chronic uti more when i have an infection.)
              Marshmallow root pills x2 at lunch
              Slippery Elm pills x4 at lunch with warm water
              Hydroxyzine at night
              Tea tree oil combined with coconut oil on urethra for pain as needed.

              Comment


              • #8
                Your welcome. This disease is very hard emotionally and physically so any support you can get is sooooo very important. This is first time in my life dealing with a depressive state of mind. I am a happy bubbly person and in these last months I have felt I would sink from the despair. I love to workout (used to be personal trainer) and that I have had to really work around to or haven't been able to at all. Any advice or help I can give let me know

                big hugs be strong
                Kierd

                Comment


                • #9
                  I feel your pain. I am 23 and I also have a two year old and IC seriously disrupts my life. My two year old is a boy and I love him so much but sometimes I have to turn on cartoons put the gate up (so that he doesn't get into the dangerous kitchen) and rest on the couch. Just remember you have to take care of you. This forum has been such a great help to me and you should definitely take advantage of it but also buy the IC survival guide if you can. I bought it and it has really helped with good tips on pain management, what to discuss with your doctor, and OTC drugs that are inexpensive. I would tell you that I have burning, urgency, frequency, and pelvic pain daily but I know that I always have someone I can talk to on here. You just have to take it day by day and try to do the best you can. If you need relief right now AZO is an over the counter drug that has really helped me in a bad flare. Also Tums help with bad burning as well as aloe vera gel and a lot of people recommend prelief (however I haven't tried that yet). For bad pelvic pain invest in a heating pad sometimes that helps me fall asleep when the pain is so bad that I can't sleep. Also take lots of warm/hot baths they really help me relax and get through really tough times. I also have sleeping problems and have tried Tylenol pm, benadryl, and all of the other over the counter sleep aids and none of them have really worked so I have come up with a good strategy that helps me sleep. First I go to bed an hour early to get myself relaxed and in a sleepy state of mind. I get into bed put my heating pad on my lower back (that's where most of my pain is) and read a good book. Sometimes I put on soothing music if I'm really stressed out then I do take some benadryl of Tylenol pm because I am a very light sleeper and this helps me stay asleep. I use the bathroom right before I am going to fall asleep and then I take two or three melatonins to help me fall asleep. Melatonin if you don't know what it is is a pill that you can find in the vitamin section and it's what our brain releases to help us fall asleep. Then I lay in the dark and just try to relax and let myself drift off to sleep. This doesn't always work every night but I have found if I take an hour before bed to get myself ready then I have more success falling asleep then otherwise. If you ever want to chat you can always message me and I hope these things help. Just remember that you are doing the best you can under the circumstances and that there are people here for you.

                  Hope that helps,
                  Jessica
                  Take: elmiron 2twice a day
                  Cymbalta once a day
                  Prosed ds as needed
                  Lydocaine gel for sex
                  Tramadol as needed
                  Oxycodone as needed
                  Orthro Evra Patch continuously
                  Diagnosed with severe IC April 2011

                  Suffered for 8 years without a diagnoses
                  I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC

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