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  • #1

    Nothing is helping!!!!!!!!!!

    Ok so I tried Lyrica, not helping. PTNS, not helping. My pain doctor wants me to try Effexor and I will, but I doubt it will help. It's like I try new things and it works for a bit then stops.

    No diet helps me, no meds help me, nothing! I'm seeing my specialist next Wed. I literally emailed him two days ago saying I couldn't live like this anymore. My pain doctor started talking about nerve ablation, and I'm all for it. I feel so weak that I surrender to the doctors. I'm ready for removal, but I know I must go through the hydro, interstim, and whatever junk they want to give me before.

    I don't know what to do anymore. I'm so desperate and angry at doctors I become so paralyzed with anxiety and I just cry literally for hours. This is not ok, it's 2016 and I shouldn't have to sleep on the bathroom floor crying for 2 years.

    I'm so done, I'm done. I just needed to vent.
    Last edited by ICNDonna; 03-22-2016, 07:28 AM.
    Health Issues
    IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
    Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
    Symptoms:
    I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

    Failed
    Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

    WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
    Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w
    Tags: None
  • #2
    Re: Nothing is helping!!!!!!!!!!

    ((((HUGS)))) I'm so sorry you are feeling this way. You're not alone. Most of us have been at the "can't live this way" stage of this nightmare. All you can do is hold on day by day and know that eventually it will get better. And it really will. I would suggest finding a therapist that specializes in chronic illness. I did and she was really good at giving me a different way to look at things and taught me some coping skills to get through the worst. I am doing much better now but it took more than a year of constant suffering. I still have bad days but it's not every second of every day now and I expect it will get even better. You will get to this point too. You just have to do whatever you need to do to get here. Don't give up to the doctors. You are your best advocate. Unfortunately the person most interested in you getting better is you. It is a million times easier if you find a great doctor as your partner but you still have to participate.

    Comment

    • #3
      Re: Nothing is helping!!!!!!!!!!

      I'm guessing by your post that you have not tried interstim or hydro? I was a mess until I had my hydro over two years ago. I did feel worse for a few weeks, but then got a lot better...what I called "remission" with only small, mini flares along the way. My uro says hydros help about 50% of people, so maybe you're one of them. Also, my uro says that the interstim has helped a lot of his IC patients. These things are worth a try before even considering removal (as well as botox and acupuncture).

      I'm so sorry you're feeling so bad, but you can't give up. There are several things you haven't tried yet. I have been on the floor crying myself, so I know how you feel. And it does feel good to vent sometimes...this is a great place to do it.

      Hugs,
      Jane
      Jane
      Diagnosed 1/7/14 via cysto/hydro

      Current Treatment:
      10 mg amitriptyline, DH Aloe Vera

      Used During Flares:
      Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

      Practicing bladder training and stress control (hot baths, pelvic stretching)
      Recently tried PT, do not appear to have PFD

      Things that have not helped in the past:
      Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

      Also have migraines and IBS

      Comment

      • #4
        Re: Nothing is helping!!!!!!!!!!

        Miss M, I've been following your story since I joined and I'm sorry you haven't found relief. Nothing you have tried YET has worked but I think there's lots more to try. Instillations, Interstim, Botox, yoga, seeing a naturopath... From what I've seen, lots of people are years into their diagnoses and it truley takes a while to figure out what's gonna work so try not to let yourself get so discouraged. I saw in your YouTube video that medicinal marijuana was helping some. Any relief you find can be looked at as a small victory, even if it doesn't make it all better right away. Are you working? If not maybe taking a part time job would help take IC off your mind for a few hours. Or volunteering for an animal shelter or church or whatever your thing is may bring you some semblance of normalcy. IC sucks but it's not the end of your story. Don't let it be.

        Comment

        • #5
          Re: Nothing is helping!!!!!!!!!!

          Hey guys, I finally got a bit of sleep, last night was awful.

          Yes, I have not had a hydro yet (there's a long story as to why) but short story, my doctor refused Dec 2015 to do it, and said I needed to "snap out of depression" before I did one. Let's just say...that didn't go over so well with me. I have wanted one since August last year.

          I'm not working because I have an unreliable sleep pattern and my pain is unpredictable. I've been trying pain stuff (like mmj) on my own to try and get to the point of working again. It's weird, stuff will help me..then it plateaus. My short term disability ran out, I'm now trying to figure out how to apply for permanent.

          I'm seeing my specialist next Wed. I think he knows I'm at my breaking point. Why do people have to get to the breaking point with this disease for people to take them seriously? It's infuriating.

          What's left for me: hydro, Botox, interstim, cyclosporine (not doing it), more pain meds.

          But thanks for following my journey <3 At least my struggles can bring awareness about this disease
          Health Issues
          IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
          Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
          Symptoms:
          I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

          Failed
          Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

          WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
          Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

          Comment

          • #6
            Re: Nothing is helping!!!!!!!!!!

            First of all, if you have a doctor who is not willing to work with you to help you feel better, I suggest seeing a different one for a second opinion. No ethical doctor will object to that --- most will encourage it --- and it doesn't mean you have to change doctors.

            I don't understand your diet description (80% alkaline, 20% acid, low histamine) --- I do very well with the IC diet with the only restriction being following carbohydrate recommendations due to my diabetes.

            I am one who is helped by hydrodistention --- even though I don't suggest it as an option until other treatments have been tried and failed, I definitely suggest it before considering bladder removal. If you opt to have this done, my suggestion is to ask for a low pressure one. After my last several, I have had Marcaine instilled and I had very little pain after the procedures.

            There's a link in my signature to the American Urology Association Guidelines for Treatment that I suggest you review before your appointment; there may be some options there that will help you. In the meantime, I'm sending well wishes your way.

            Warm hugs,
            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

            • #7
              Re: Nothing is helping!!!!!!!!!!

              MissM, I follow you too and enjoy your videos. I have been rooting for you and was so hoping this was going to take care of things for you. Is there any chance the lyrica needs more time ? I know you have tried a loooot of things! Who thought something no one heard of could be so devastating. You are young and should be enjoying some much now! I believe you will find the road to some relief. You're too smart to not somehow navigate through. You've got too much to offer to the world, although I know that's really hard for you to believe right now. This thing can be so so ugly. Please hang in there. Please keep researching for something that make sense to you that might help. Let us know how Wednesday goes.

              Comment

              • #8
                Re: Nothing is helping!!!!!!!!!!

                Do not make hydro, my uro is telling as well it is bad idea because it is giving in bladder more scars and so bladder starts shrinking. NOT good!
                But you tried Heparin far too short and you did not try Uracyst instills, which you can get from Canada. For some people they make miracles. It actually repaired visibly my bladder lining in 2 years, unfortunately I still have symptoms and next step is Botox. But in Germany is wide-known that Uracyst is crucial to bladder lining not to go worse by time.

                Comment

                • #9
                  Re: Nothing is helping!!!!!!!!!!

                  MissM
                  So sorry for your suffering. I feel your frustration and pain also.
                  Does the cbd oil help a lot?
                  I know this probably isnt the right forum or thread for it but saw it in your signature.

                  Comment

                  • #10
                    Re: Nothing is helping!!!!!!!!!!

                    Hey, CBD oil can help but it's not life changing sadly I would try it out though.
                    Health Issues
                    IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                    Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                    Symptoms:
                    I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                    Failed
                    Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                    WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                    Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

                    Comment

                    • #11
                      Re: Nothing is helping!!!!!!!!!!

                      Hi MissM, I've been watching your YouTube videos. Are you still of your birth control? Has that helped any?

                      Comment

                      • #12
                        Re: Nothing is helping!!!!!!!!!!

                        Originally posted by Samantha Alexis View Post
                        Hi MissM, I've been watching your YouTube videos. Are you still of your birth control? Has that helped any?
                        I have been both on bc and off bc with IC and it's never affected me positively or negatively. Mine isn't related to hormones, accutane damaged my nerves and bladder function.
                        Health Issues
                        IC - Symptoms started June 2014. Official diagnosis on October 2, 2014.
                        Doctors believe this was triggered by Accutane which I took from March 2014-July 2014
                        Symptoms:
                        I don't have flares, constant bladder filling pain, tenderness of urethra & bladder, and suprapubic pain since Sept 2014.

                        Failed
                        Norco, Nucynta, Neurontin-300-2,700mgs, Elavil-10-50 mgs, Lexapro, Klonopin, DH Aloe, Cystoprotek, Heparin & Elmiron Instills, 6 months Pelvic Floor Therapy, Hydroxyzine 75mgs, Singulair 10mg, Lyrica 600mg, Effexor, Elmiron 300mgs, Flomax, Myrbetrique, PTNS, TENS, MMJ, Nerve Block, Every diet & herb out there! Pain Pump Fail 1/2/17

                        WHATS LEFT!? - Pain Stim trial, Interstim, Hydrodistention, Botox, CyA and finally bladder removal.
                        Follow me on my IC Journey: https://www.youtube.com/channel/UCGr...BRg2Xf495n_q6w

                        Comment

                        • #13
                          Re: Nothing is helping!!!!!!!!!!

                          I am so sorry you are suffering. This disease truly sucks! I totally hear your frustration, and I get it. I have tried almost everything there is for IC. I asked the last uro I saw about bladder removal. She was totally against it though. She said it is a HUGE surgery and carries many complications. She told me she has patients who had their bladder removed and most still have IC issues as well as other complications caused by the surgery ( you have to have a intestinal resection when you have your bladder out in order to make a conduit for the urine to leave the body). She said intestinal obstructions and kidney problems are Huge with bladder removal surgery. It is so hard, I mean there are times that I do okay, I manage and do not even want to consider surgery. However, there are a lot of times that I would just love to be done with it and have it out. I was hoping they would come out with better treatments for this disease or at best find the stinken cause of it!






                          Originally posted by MissM View Post
                          I have been both on bc and off bc with IC and it's never affected me positively or negatively. Mine isn't related to hormones, accutane damaged my nerves and bladder function.

                          Comment

                          • #14
                            Re: Nothing is helping!!!!!!!!!!

                            Hey everyone,
                            It's the Fourth of July and I started a flare this morning.......I too feel frustrated and not in control of my body( which I don't do well). Hydroxine helps me some as does Bentyl and Tramadol and Uribel. I have had 7 hydros and they help me so much but only last about 6 weeks to 2 months.
                            It is very hard to have a disease without a cure....I get so down because of the pain and the inability to do day-to-day things.
                            I've learned that Drs treat the pain and disease but rarely know how to give mental advice to chronic pain patients.
                            I have a great therapist I go to and I try to keep a good support group. I cry when I have to and use tens unit, ice and heat... Along with meds and diet and STILL have an attack. I think it is the nature of the ugly beast known as IC.
                            I thank God for this network. That I can read and reach out and know I am not alone.
                            I wish you all good health.

                            Comment

                            • #15
                              Re: Nothing is helping!!!!!!!!!!

                              MissM and friends-
                              I just saw this post. I have been on and off the boards. I hope things are going better for you. I really liked what Donna said, Find a different MD. I KNOW how vulnerable it is to be an advocate when your not feeling your strongest. Do you have a good friend or family member that can come with you to appointments. For me its like fairy dust and gives me more "oomph"---I work in healthcare and I have been where you are, sobbing on the phone, wanting someone to lead the parade to help me.

                              So please don't give up, the boards have so many wonderful people who can help with all aspects of how your feeling. Feel free to reach out at any time. My Uro in CA called all but 2-3 things "witchcraft"- which sucks. Its a lot of trial and error. Have you seen the AUA 2010? IC/PBS treatment Algorithm? That might help. Just know no matter what is going on some one is always always here for you.1

                              Melanie
                              I am blessed to have an Indiana Pouch now
                              IC since childhood, finally diagnosed at 31 yo
                              PFD/Pelvic Pain,SI joint and LBP
                              Low Back Pain s/p spinal fusion at 19 with more nastiness in back
                              Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
                              Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
                              Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
                              Hysterectomy 2/3/12 w one ovary removed
                              Dry Eyes
                              L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
                              Still have issues, still take meds.

                              I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
                              Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

                              Comment

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