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  • #1

    Seriuosly Freaking Out

    I have been having some off and on bladder pain lately, but last night and today have to be the worse. I had a few weeks pain free, and then all of a sudden things started up again. I am having issues with urinary retention (somewhat dependent on a catheter), bladder spasms, and really bad bladder pain. I am doing everything I would normally do: take my pyridium, klonopin, valium vaginally, pain medicine, etc. I am just still in a lot of pain.

    I am also supposed to leave for DC on Thursday morning, and have been somewhat stressed about it (mostly just the airport-basically I have one bag dedicated to medical supplies). This really got bad last night after I did my treatment. I called my doctors office and have not heard back yet. I am crying uncontrollably right now, and just want the pain and pressure to go away.

    I just want to go to DC, relax and have a nice time. It is all paid for and I want to take advantage of that. I think I will be fine when I get there. This is the first time traveling since I have been doing instillations. I was supposed to go for a massage tomorrow, but have changed it to today. I am pretty sure that will help calm me down and get rid of some stress. My massage therapist is amazing, and really kind. She knows all about my condition and everything.

    I just want the pain to go away right now, and to stop crying. I'm trying to calm down the best I can. I think nerves and everything is catching up with me. I just wish I knew why I got a bladder spasm after my treatment, that really does not happen.

    Sorry for being this way, just really need to vent, and let it all out.

    Erin
    24 year old Ph.D student in Organic Chemistry

    Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

    My blog (just started):

    http://imaginenoworries.blogspot.com/

    Medications:
    Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
    Cymbalta 60mg
    Gabapentin (Neurontin) (3200mg/day)
    Zyrtec 10mg
    Xanax 0.5mg up to 3 times a day(spasms, anxiety)
    Uribel
    Macrobid 100mg (only on days when doing an instill)
    Albuterol
    Yaz Birth Control (3 months on birth control, then period)
    Pelvic floor therapy
    Valium 5 mg (inserted vaginally)
    MScontin 30 mg (3 times a day)
    Percocet 10/325mg (every 6 hours)
    TENS Therapy, CVS machine, 30 minutes once or twice a day
    Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

    *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

    Instill:

    Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

    Used to do these:

    Solu-Cortef (act-o-vial) 100 mg: 2 mL
    Marcaine (bupivicaine) 0.5 % 25 mL
    20,000 units Heparin
    3 mL sodium bicarbonate

    Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'
    Tags: None
    • #2
      I think you should also be checked to be certain you don't have an infection working.

      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.

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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

        Comment

        • #3
          Originally posted by ICNDonna
          I think you should also be checked to be certain you don't have an infection working.

          Warm hugs,
          Donna
          I second this, especially since you've changed nothing yet your symptoms have worsened AND you're being catheterized. You might have a low-level infection that probably wouldn't bother just anyone this bad but because you're already inflamed and in the process of healing it's just exacerbating everything.
          Can you go to your primary and get a culture done? Or even have them dipstick it in the office since you're traveling soon. I can think of nothing worse than to have to endure that much pain without knowing what's going on while on an airplane!

          Good luck -- sending you lots of healing vibes.
          Mom to two littles (remissions while pregnant/breastfeeding)
          Sufferer since mid-90s
          Finally dx'd properly much later

            Comment

            • #4
              I went to my uro's office, and they checked for an infection and there was not one present. They are increasing my dosage on my pain medication from the norco 5/235 to the 7.5/325 hoping that it will help.

              I am just feeling terrible, sick to my stomach and just overall upset. I just wish something would help. I hate this so much.
              24 year old Ph.D student in Organic Chemistry

              Loves to listen to music, play with my animals (cat, fish, 2 hamsters), and live life to the fullest each and every day.

              My blog (just started):

              http://imaginenoworries.blogspot.com/

              Medications:
              Elavil 25mg (helped with nighttime urination-used to be 7 or more times a night, now just once)
              Cymbalta 60mg
              Gabapentin (Neurontin) (3200mg/day)
              Zyrtec 10mg
              Xanax 0.5mg up to 3 times a day(spasms, anxiety)
              Uribel
              Macrobid 100mg (only on days when doing an instill)
              Albuterol
              Yaz Birth Control (3 months on birth control, then period)
              Pelvic floor therapy
              Valium 5 mg (inserted vaginally)
              MScontin 30 mg (3 times a day)
              Percocet 10/325mg (every 6 hours)
              TENS Therapy, CVS machine, 30 minutes once or twice a day
              Sanctura XR 60 mg (to help control severe bladder spasms that are causing urinary retention episodes and enable normal bladder sensations)

              *** 1/4 of a teaspoon of baking soda in an 8 ounce glass of water up to 4 times a day*****

              Instill:

              Currently doing hyaluronic acid instillations (cystistat-6 instillations, once a week, already had 4...not sure if helping)

              Used to do these:

              Solu-Cortef (act-o-vial) 100 mg: 2 mL
              Marcaine (bupivicaine) 0.5 % 25 mL
              20,000 units Heparin
              3 mL sodium bicarbonate

              Diagnoses: Moderate IC, scoliosis, asthma, ovarian cysts, PFD, IBS, Fibromyalgia, vulvodynia, Fowler's syndrome (mild) 'Central Sensitivity Syndrome.'

                Comment

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