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20s and pain management??

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  • 20s and pain management??

    Hello all!

    I am 26 and have been diagnosed with IC since I was 23. At this point I have tried EVERYTHING. I currently am taking elmiron for the second time, vaginal valium, and tizanidine. I've just finished my last "rounds" of lidocaine/heparin instillations that only work the day of. At this point my urologist and pcp believe that I am only going to benefit from seeing a pain management doctor. While I agree, and have my first apt in a month, it scares me to only be in my 20s and relying on pain meds. My family and friends are not that supportive either. I guess I'm just wondering if there's anyone else in my age group that's dealing with this same delimma as me. I can't keep going to the ER during bad flares, and I believe I would greatly benefit from some type of regular pain med....I guess I'm just needin a little encouragement from people I know who understand like everyone on these threads! Thanks y'all!

    Jessica

  • #2
    Re: 20s and pain management??

    I know it may feel like you've tried everything but the list of possible treatments is pretty long. Since your IC was just diagnosed three years ago, my guess is that there are many treatment options out there that you haven't tried yet. Also, you haven't said if you are following the IC diet or not. That's a great place to start if you aren't doing so. Many ICers find that they feel much better consistently avoiding ALL the foods and beverages that cause them to flare.

    "When you gotta go, you gotta go!"

    Comment


    • #3
      Re: 20s and pain management??

      Hey Bladderella thanks for your response! Cute name btw haha. I currently follow the IC diet as close as I can. I stopped drinking diet coke which was like my coffee, and have been eating bland foods for the past few months, with a few slip ups of course. I know my food triggers very well. I am on continuous birth control so i won't have a period bc the flares with periods as we all know are awful. I've tried hydroxizine, pyridium, regular azo, Amitripillne, DMSO instillations, heperain/lidocaine instillations, myrbetriq, Enablex, urebell, oxytrol patch, cymbalta, vaginal valium, tizanidine, & have a cream for my urethra my dr makes me use two weeks on/off. .Tylenol, aleve, ibuprofen doesn't touch my pain. and of course hydrocodone here and there which does help some. I also take warm baths/sitzs baths and ice packs are my best friends during flares. Sorry for not clarifying what i have tried...just feels like I'm at the end of my rope!

      Comment


      • #4
        Re: 20s and pain management??

        re diet, a few unfortunate of us are super diet sensitive...so that might be worth experimenting with. I have just started the autoimmune protocol and have had more good days since cutting out more food that I thoughtvwas safe, so may be about the whole picture not just individual foods.
        I already knew gluten was my enemy, but recently dairy, all grains, beans, pulses, lots of veg....they all started affecting me. So whilst not saying answer, might help to rebook at diet to see if any other triggers that could lessen pain a bit.

        Comment


        • #5
          Re: 20s and pain management??

          Hi Jessica

          I would highly highly encourage you to go to your pain management doctor appt. I'm 27 and have IC and PFD and I have a pain doc along with the urologist, gyno, PT, etc. My IC is constant pain so I really need the pain meds and a pain med doctor can also help you consider trying meds targeting nerve pain or muscle pain, or do procedures like nerve blocks. Full disclosure, my IC is pretty bad so the oral meds aren't cutting it and I'm considering a device for pain called a spinal cord stimulator (different than the interstim). But don't think about that now. So even if you haven't exhausted the list of IC treatments as others have mentioned a pain doc to help you along the way even while you're working on other treatments can make a big difference (a pain doc does not mean you're giving up on finding other solutions). Don't be taken aback when you are the younger one in the waiting room . And don't be offended at the sternly worded patient doctor contract (it's so you don't resell your pills on the street, and are ready for random urine samples... I think any ICer is always ready for a bathroom break!). And doc training on pain meds in the US is actually very limited unless you go into the specialty, so might as well get a specialist. So I'm excited for you!
          How it started: Confirmed UTI in summer 2013 that lasted 4 months due to poor medical care abroad. Once back in US biopsy showed some inflammation but nothing remarkable

          Diagnoses:
          IC based on symptoms, PFD, Pudendal Neuralgia (based on nerve blocks), Chronic Pelvic Pain

          Symptoms: Constant burning bladder that worsens as bladder fills, Constant stabbing/throbbing pudendal pain, Pelvic floor tightness and pain, Urinary hesitancy and difficulty emptying fully, Bloating and increased pain based on hormones

          Past Treatments: Acupuncture, Diet change (NO effect), Elmiron, Supplements, Many meds, DMSO, Lidocaine instills, Pelvic Floor injections, Hypogastric Plexus Nerve Blocks, Pudendal Neuromodulation

          Current Treatments: Instills, Gralise ER, Baclofen, Valium, Elavil, Cytotec, Pudendal Nerve Blocks, Yoga, Pelvic Floor PT, my doggies

          Future Treatments:
          Hydro, Cyclosporine, Radiofrequency ablation (Pudendal Nerve)

          Comment


          • #6
            Re: 20s and pain management??

            Not to rehash your business, but have you been evaluated for pfd?
            How it started: Confirmed UTI in summer 2013 that lasted 4 months due to poor medical care abroad. Once back in US biopsy showed some inflammation but nothing remarkable

            Diagnoses:
            IC based on symptoms, PFD, Pudendal Neuralgia (based on nerve blocks), Chronic Pelvic Pain

            Symptoms: Constant burning bladder that worsens as bladder fills, Constant stabbing/throbbing pudendal pain, Pelvic floor tightness and pain, Urinary hesitancy and difficulty emptying fully, Bloating and increased pain based on hormones

            Past Treatments: Acupuncture, Diet change (NO effect), Elmiron, Supplements, Many meds, DMSO, Lidocaine instills, Pelvic Floor injections, Hypogastric Plexus Nerve Blocks, Pudendal Neuromodulation

            Current Treatments: Instills, Gralise ER, Baclofen, Valium, Elavil, Cytotec, Pudendal Nerve Blocks, Yoga, Pelvic Floor PT, my doggies

            Future Treatments:
            Hydro, Cyclosporine, Radiofrequency ablation (Pudendal Nerve)

            Comment


            • #7
              Re: 20s and pain management??

              Originally posted by Jjustic7 View Post
              Hello all!

              I am 26 and have been diagnosed with IC since I was 23. At this point I have tried EVERYTHING. I currently am taking elmiron for the second time, vaginal valium, and tizanidine. I've just finished my last "rounds" of lidocaine/heparin instillations that only work the day of. At this point my urologist and pcp believe that I am only going to benefit from seeing a pain management doctor. While I agree, and have my first apt in a month, it scares me to only be in my 20s and relying on pain meds. My family and friends are not that supportive either. I guess I'm just wondering if there's anyone else in my age group that's dealing with this same delimma as me. I can't keep going to the ER during bad flares, and I believe I would greatly benefit from some type of regular pain med....I guess I'm just needin a little encouragement from people I know who understand like everyone on these threads! Thanks y'all!

              Jessica
              Just a thought --- I have a friend who does instillations at home every day. You might talk with your doctor about that option. I just might work for you.


              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

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