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  • New Symptoms

    Sigh. I was diagnosed with mild IC in December 2010 via a hydro with cystoscopy after having had symptoms since a UTI in late June of 2010. Anyways, thanks to watching my diet, Vesicare (with occasional AZO and Percoset) and catching any pain early instead of letting it fester, I've felt like a million bucks since the Spring. I would flare for only short amounts of time (never with pain, just frequency) and a lot of triggers wouldn't even affect me.

    The only symptom that remained constant and bothersome for me was a slight burning feeling during sex. It would occur to varying extents. Sometimes it was dull enough to ignore, other times it was more intense and I would have to stop. For the most part, the burning was located only in the vestibule.

    As of two weeks ago, I now have a 24 hour burning of my entire crotch. It's mild but constant. Inner labia, vestibule, urethra, clitoris, everything (though it's more of a dull ache in the clitoris than a burning). Or actually, it's hard to say for sure it's affecting all those areas. For all I know it could be burning in the urethra radiating out everywhere else and I'm just confused what's what. Who knows. It began with the start of my last period. I do recall using a different brand of tampons. Not sure if that could be related.

    My uro is impossible to get an appointment with. I got a referral to two different gynocologists from my family doctor but neither of them have called yet. I've gone to a walk-in-clinic for a pap and tested for std's, bv, yeast, etc and nothing. All negative. Very likely it's pain from the urethra or bladder radiating to the vulva or maybe an allergic reaction to something? Or vulvodynia? Really, I just feel like I can't handle any more problems. The doctor said I looked perfectly normal during the pap but I'm convinced my labia is more red than usual.

    And the worst part is that a man I really want to be with is flying in to see me in two weeks. I really REALLY don't want to be a mess when he comes. I actually can't imagine letting anyone touch me, let alone having sex knowing how much worse it will likely make this pain. And it's not like the pain is THAT unbearably bad. I just want to be my best.

    I stocked up on MSM/Glucosamine, Calcium Citrate and almond milk yesterday and am downing all three like a maniac trying to get the burning/aching to stop. It's really not so intense but I find I'm unable to tolerate any amount of pain. It depresses me so much. I feel like I shouldn't have to be in any measure of pain over this stupid condition. The frequency I can deal with when it happens but pain? No thank you.

    Does anyone else experience this burning/aching of the vulva? Is it normal for newish symptoms to happen after a year and a half of having IC? Like, really? What next?! Sorry guys, so needed to rant. I would love absolutely any suggestions about what to do to make this discomfort go away.
    Last edited by dollie; 10-10-2011, 07:32 AM.
    Symptoms began: July 2010 after UTI
    Diagnosis: Mild IC, confirmed through hydro/cysto December 2010
    Treatment: IC diet, MSM/Glucosamine, Vesicare, Percoset, AZO Standard, Prelief, Calcium Citrate

  • #2
    I do get thAt burning sensation from time to time, does it feel the Area is a little "raw"? Almost like a rash type of burn? Is it worse after you pee or have sex? It gets worse for me sometimes after Peeing, so as if the godawful frequency sensation isn't bad enough (it's my worst symptom ever and I cant get a handle on it), we get to burn now too? Have you tried like a soothing oatmeal cream around that area? What about rash cream like a and d or something along those lines? Maybe a sits bath (you can find those at any pharmacy)? I hope you feel better soon. Sending hugs to you

    Nancy
    Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

    Had a UTI in Oct 2009
    IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

    Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

    Diagnosed fibromyalgia/lyme disease in 1999
    Acid reflux since 1998

    Have tried the following therapies:
    pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
    Ativan-helps some
    Vicodin-some relief.
    ditropan-only caused fluid retention
    toviaz-same as abovee
    detrol-no relief
    hydroxyzine-get some relief but not for urgency
    valium-helps relax the muscles
    flexeril-same as the valium
    B&O suppositories-they help a little
    started estrogen cream
    starting effexor soon

    Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

    current meds and treatment:
    nexium
    ativan
    valium suppositories
    hydroxyzine
    IC diet
    methenamine mandalate
    estrogen cream
    effexor
    B&O suppositories

    Had bladder instills but this made the urethra spasms much worse.

    Had hernia repair with fundoplication dec, 2011

    Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

    Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

    Husband is my biggest supporter. I need the urgency to go away. What helps??

    Comment


    • #3
      This has just started happening to me too! It was so bad yesterday I took a low dose of Ativan .25 and it took the edge off, so that at least I could function. The area does look raw and bothered. I see the PT today and will see what she says . I'll let you know. I also feel intense dryness when this is flaring, do you ?

      Comment


      • #4
        I have had the burning too. I feel like that's worse than the pain. I've found that laying down with a cold pack between my legs helps a bit. Also, I've taken pyridium and it's helped with burning too.
        Hope you find some relief soon!

        Comment


        • #5
          I take Ativan all the time so I don't think it works for me anymore at all. The ice pack sounds like a good idea. Let us know how Pt goes today
          Nancy - newly remarried Sept 2011! Have 5 kids ages 7-22.

          Had a UTI in Oct 2009
          IC symptoms started immediately: strong urgency, little bit of burning, fullness in the bladder, urethera spasms

          Had three scopes of my bladder and one hydrodystention-this did not help at all. Found classic bleeding during the hydro. Later told almost everyones bladder bleed the test Also had a urodynamics test-normal. Did anyone have it done more than once? My newest urogynocologist does not believe

          Diagnosed fibromyalgia/lyme disease in 1999
          Acid reflux since 1998

          Have tried the following therapies:
          pelvic floor PT-relaxed the muscles but did nothing for the urgency feeling.
          Ativan-helps some
          Vicodin-some relief.
          ditropan-only caused fluid retention
          toviaz-same as abovee
          detrol-no relief
          hydroxyzine-get some relief but not for urgency
          valium-helps relax the muscles
          flexeril-same as the valium
          B&O suppositories-they help a little
          started estrogen cream
          starting effexor soon

          Had an interstim placed in 2010. Do not really notice any changes with the urgency feeling. I turned it off 6 mos ago.

          current meds and treatment:
          nexium
          ativan
          valium suppositories
          hydroxyzine
          IC diet
          methenamine mandalate
          estrogen cream
          effexor
          B&O suppositories

          Had bladder instills but this made the urethra spasms much worse.

          Had hernia repair with fundoplication dec, 2011

          Will be trying the anti inflammatory diet. Hope it works. I dont know where to start with this diet.

          Always looking for ideas on how to stop urethra spasms and urgency. Anyone in the Colorado Area? Always looking for support.

          Husband is my biggest supporter. I need the urgency to go away. What helps??

          Comment


          • #6
            If there is a Urogynecologist in your general area go see one. They are worth the drive, I promise! This sounds like some type of nerve dysfunction - there is help. I have vestibulodynia, I had no idea it even was a condition until my doctor diagnosed me and I can't tell you the relief...I got so used to sex hurting I forgot its actually not supposed to.

            Comment


            • #7
              Cerissa,

              I was wondering what type of treatment, other than PT, is available for vv. I'm still so new to this and I would love to have pain free sex again

              Thanks!

              Suzi

              Comment


              • #8
                A dysfunction in one area can cause a dyfunction in another so it is possible "vulvodynia" is what you are suffering from.

                I have tried most things so if I can be of assistance please PM me.

                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


                • #9
                  Claire,

                  That's a very beautiful photo of you! Thanks for sharing.

                  Suzi

                  Comment


                  • #10
                    I have not found a solution to painful sex and would love to as well. For me it has been this way since my TAH hysterectomy. I have not found any relief or Dr. who suggests one.
                    I do find that after sex if I go thoroughly shower between my legs and then on my tummy with the hand held part of our shower and then put a valium in my vagina with lidocaine (one of Dr. Dan Brookoffs suggestions) it helps the pain to not last as long afterward. I've also found the therapy perineum wash bottle helpful and so I got a Blue Bidet brand bidet wash attached to my toilet. It is wonderful for that and for washing after peeing. I highly recommend them. I also cut up worn out white cotton tee shirts to use to blot instead of Toilet paper which always leaves very irritating fibers. If I'm really sore I wear a thong panty under my regular panty as it keep the area from getting rubbed raw.
                    Still I would dearly love to truly enjoy sex again with my wonderful, loving and patient spouse. We've tried many suggestions here already. Too young to give up sex!
                    iCyJuNoMaRy

                    Comment

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