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Need help, questions about vestibulitis

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  • Need help, questions about vestibulitis

    I was diagnosed with vestibulitis on Feb. 6 by a urogyno and given temovate. I started it Sunday and am to use it three times a day for two weeks, then two times a day for two weeks, then at night only for two weeks and then once a week. My doctor said surgery to remove the glands is an option. I really don't even want to consider that surgery though if there's other treatments. I'm, of course, hoping this treatment works (although it's day three and I feel itchy! Pharmacist said it could be the dry weather though, too.) Has anyone tried temovate, had success? Tried another treatment that I could suggest to my doctor? Thanks for your responses in advance --
    Blessings, Susan

    IC -- August 2006 Dx cysto w/ hydro. Treatment: Prosed DS as needed, Prelief, Elmiron 100 mg in morning/ 200 mg. at night before bed, hydroxyzine 25 mg at night

    Vulvar Vestibulitis -- Dx February 2007

    Migraine -- started 1985-89, progressed in 2002 and worsened at end of 2006 with onset of TMJ disfunction.

    TMJ Disfunction --clenching/grinding my teeth at night. Dx December 2006

    Fibromyalgia -- Dx April 2008

    Mild depression/anxiety disorder
    (Not completely cured, but on-so-much better. :woohoo

    "But He knows the way that I take; when He has tested me, I will come forth as gold." (Job 23:10 NIV)

  • #2
    You may want to PM Amy(ihurttoo) she is very knowledgable about this and would be able to help you with question.


    • #3
      Oh yes I have used this but it didnt help me I'm afraid! I used it the same as you but it didnt help at all!
      I now use Elavil which takes away the pain (alittle) and use aloe vera gel to cool the area and help with soreness and iching.
      I was diagnosed 2 years ago and have tried so many creams/meds etc I have lost count.

      I really hope it helps you though, take carex
      Started with symptoms 2004 after a severe infection.
      Was diagnosed with IC Feb 2006 after cystoscopy.
      Diagnosed with vulvodyina and PN in july 2006.
      Dignosed with ME and IBS Oct 2006.
      Currently taking Amytriptaline 50mg, regular pain killers and birth control!
      Also doing IC diet and regular use of heat packs.
      Still struggling with IC and controling my symptoms so looking for some help

      also recently had abnormal pap, CIN III and just had LEEP done 2007


      • #4
        I had a vulvar vestibulectomy a few years ago. I tried lots of things for years before the surgery, but nothing really helped me except the surgery. The surgery was a complete success for me. Fee free to pm me if you have any questions. I hope you find something that helps you without having to resort to this, but if it does come to that, I will be glad to answer any questions you might have. Hugs, Amy


        • #5
          I take Elavil; killing two birds with one stone!..

          take care
          (o.O )
          (> < ) This is Bunny. He's on his way to world domination.


          • #6
            I too have vulvodynia and am going (like the IC) started during pregnancy. Then it went away and now it's back w/a vengeance. How many have experienced urinary retention w/Elavil?
            (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

            Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

            I'd like to be on House, MD as a medical mystery.

            Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

            Connor & Mommy by the tree:

            Connor with happy!

            I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

            Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

            I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!