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  • Nothing seems to be working !

    Hi everyone,

    Looking for some encouragement. It seems as soon as I think there may be some improvement in IC symptoms they come back again. I thought the diet / cystoprotek was eliminating my bladder pain, last night with sex I got a jabbing sensation in my bladder (which I have never had before) and the night before last night it was there as well, as if sex for me is not complicated enough as it is! Today I have horrible bladder pain. In the past year with this I have not had any bladder pain with sex? Does this mean my IC is getting worse?

    And VV, well I have just about given up. PT just flares me like crazy, the nerve medications did not work, and that’s about all you have for vv isn’t it?

    I am trying to do this naturally if possible but even my specialist (natural) is running out of things that may help. Everything she suggests either makes no difference or makes it WORSE. Diet is the only thing that has made some difference. Then I can go and drink 2 alcoholic drinks (when feeling good) and it does not flare me at all – I only do this once every few months though, and I am careful.

    Confused and very, very over this crap 

    Claire
    TMJ Dysfunction 2009
    Vulvodynia and/or PFD 2010
    IC, based on symptoms alone 2010.
    PCOS March 2012

    8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

    Currently using: IC Diet...pain meds as needed
    Medications / treatment tried and discounted:
    Fluconazole 150mg 1 per week for 6 months (yeast)
    Endep 25mg - 4months
    Lyrica 75mg - 2 months - FLARE
    Oxytrol patch - I think this caused retention.
    Countless creams, lotions and potions.
    Cystoprotek - no change in symptoms
    PT - for 1 year
    Various herbs and supplements

  • #2
    Hi there,
    Looking at your treatment list, is it updated? Asking because the mainstays of IC treatment are:
    1) Oral medications: Elavil, Elmiron, and Atarax. These have the most research backing them for IC treatment.
    2) Instillations of heparin and an anesthetic like lidocaine or heparin, plus sodium bicarbonate to make them absorb better.

    Elavil reduces pain from nerves as well as reducing frequency of urination, so that's probably where I'd start the conversation with your doctor.

    You might want to use the search feature of these forums to look up ways to make sex more comfortable during & afterwards. There are some good threads on this in these message boards. But, that said, the recent onset of pain with sex is something to check out with your gynecologist just to make sure there's nothing new going on. Once you've cleared that as a possibility, it might be that over time with your IC, the pelvic muscles have been affected and you might want to look into physical therapy again. I couldn't tolerate internal PT (I got a bad bladder & kidney infection the one time we tried & I refused it again), but I did get significant improvement just from doing the external PT exercises.

    Wishing you relief soon,
    Kadi

    -------------------------------------------------------------
    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.
    ------------------------------------------------------


    New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
    Source - Pinterest
    "


    Current treatments:
    -IC diet
    -Elavil 50mg at night
    -Continuous use birth control pills (4-5 periods/year)
    -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
    -Pyridium if needed,
    -Pain medicine at bedtime daily, as needed during the day several times per week
    -Antibiotic when doing an instillation to prevent UTI
    -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
    -Dye Free Benadryl 50 mg at bedtime
    -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
    -Managing stress= VERY important!
    -Fur therapy: Hugging the cat!

    Comment


    • #3
      Hi Kadi,

      I tried endep which is elavil, this was before the IC symptoms were really around though, I was attemting to use it for vulvodynia... I stopped about 4 months ago because of a bad reaction. Come to think of it, IC could well have been present but I didn't notice because I was on the Endep. Bladder pain has only come on bad in the last 3 months. But I AM trying to do this naturally, so don't really want to be on drugs if there is a more natural alternitive... but willing to try again if natural route fails. We do want a baby in the next few years and I wouldn't want to be on any medication for pregancy. This is why I want to get onto something natural that works.

      Elmiron is $300 per month and I can not afford that.

      Instills scare me! I know how bad a cathather makes me feel, I do not want to go there, I wouldn't say I am bad enough for that really...I have daily pain but it is so mild compared to what I read on here..

      I might give external pt a shot again. Any tips for stopping the stabbing pain in the bladder with sex? ouchhh!

      Thanks for the response.
      TMJ Dysfunction 2009
      Vulvodynia and/or PFD 2010
      IC, based on symptoms alone 2010.
      PCOS March 2012

      8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

      Currently using: IC Diet...pain meds as needed
      Medications / treatment tried and discounted:
      Fluconazole 150mg 1 per week for 6 months (yeast)
      Endep 25mg - 4months
      Lyrica 75mg - 2 months - FLARE
      Oxytrol patch - I think this caused retention.
      Countless creams, lotions and potions.
      Cystoprotek - no change in symptoms
      PT - for 1 year
      Various herbs and supplements

      Comment


      • #4
        Hi Claire,
        My thought reading your post is that I'd first see a doctor to figure out what is causing the pain during sex. People can suggest things, but if you don't know if the pain is coming from the bladder directly, or from the pelvic muscles cramping, or from some other cause, then whatever someone suggests may not work, and failed treatments are really really frustrating, and wasted time...
        Wishing you better days soon,
        Kadi

        -------------------------------------------------------------
        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.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "


        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment


        • #5
          I agree since pain with sex is new to you, you need to get it checked out.

          If it turns out to be that your bladder is tender, and sex is causing it to spasm, which maybe the case if your pain got worse after you stopped the Endep.

          Then maybe it was helping you more than you knew and should go back on it.

          In the mean time if the pain is coming from your bladder, while you are waiting for Endep to start working again, my Dr. rxed me ativan to be taken prior to sex, it relaxed the muscles and I didn't get the pains during or afterwords any more.

          I only needed to use it for a while. At first I would have to take a does prior and then a hour or 2 afterwords and sometimes for a few days, it progressively got better, to the point I don't need to take it any more.

          I attribute a lot of success to the diet.

          Also for VV, have you tried putting Vit e oil on your skin, it does help me, when it is bad I alternated vit E with a rx hemorrhoid ont, yes this works and is made for skin in that area. Beware not OTC hem ont it has very different ingredient in it.

          I think there are still things you can try, don't give up.

          MG
          My are with you all. May you all find a way to peace and joy in your lives.

          Comment


          • #6
            Mg

            I think i spoke to you previously about the hemmerhoid oint in a PM. I have not tried that yet, I use either vit e or shea butter on the external skin which helps with the daily rawness.

            I am almost 100% this pain is my bladder during sex. It is the same stabbing pain I get when I eat something I shouldn't have. It feels as though hubbys penis is stabbing my bladder.

            I see my specialist tomorrow, so will see what she says. If she has no recomendations I will ask gp for some form of relaxant. ativan maybe.

            I really don't want to go on Endep again.

            Does vaginal valium help the bladder?

            Thanks,

            Claire
            TMJ Dysfunction 2009
            Vulvodynia and/or PFD 2010
            IC, based on symptoms alone 2010.
            PCOS March 2012

            8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

            Currently using: IC Diet...pain meds as needed
            Medications / treatment tried and discounted:
            Fluconazole 150mg 1 per week for 6 months (yeast)
            Endep 25mg - 4months
            Lyrica 75mg - 2 months - FLARE
            Oxytrol patch - I think this caused retention.
            Countless creams, lotions and potions.
            Cystoprotek - no change in symptoms
            PT - for 1 year
            Various herbs and supplements

            Comment

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