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  • Vulvodynia

    A few months ago I saw a GYN in NYC for Vulvodynia. He prescribed Flexeril 5 mgs at bedtime. It has helped so much. I don't have the day to day pain and burning. Certain times of the month I have a problem so I asked him if I could increase it to 10 mgs and he agreed. I started that last week. I'm tired but I can't tell you how much it has helped.
    If you want info on the doctor email me privately.

  • #2
    That's a great med, I used to take 10 mg. of it at nightime for my Fibromyalgia. Glad it's working so well for you.
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


    • #3
      Could someone give me more information about vulvodynia? I'm experiencing urethra burning that is constant, and though it seems to have irritated my bladder, it only burns a little when I start to pee, (all urine tests negative). I'm also urinating about every 45 minutes if I'm drinking lots of fluids, otherwise I can wait around two hours.

      I can sleep all night I'm almost symptom free while sleeping, though I do notice some spasms in the urethra when going to sleep. Rest seems to help me and I feel pretty good early in the day but the burning increases thoughout the day. Some days aren't as burny as others.

      I also had my last period in early November (no December) so, I may be starting menapause.


      • #4
        I'm perimenopausal...and I have more flares of vulvodynia and ic during hormone shifts. I take provera the last 10 days of the month to regulate my period. I notice flares mostly then. Prelief helps a lot. So can barefoot calcium - which also has calcium + magnesium. And believe it or not, vitamins help. I'm not sure why.
        I usually try a glass of milk with 2 barefoot calcium.


        • #5
          In my last post I mentioned I missed my Dec. period. Well, I had my period on Jan 3rd. It was 57 days late. The flow was very heavy but today (Tuesday) the flow is almost gone. I'm still burning and still think I might have volvodynia. Tomorrow I'm seeing a brand new doctor. Hopefully this one will give me something for pain.



          • #6
            I do hope your Dr. visit goes well. I am trying to get my ic under control, my ibs, which is now "acting up" and the vulvodynia (which I did not know even had a "name", I just know I hurt...Good luck to you, and let us know how it goes.
            Always try to do the right thing; it will astonish some people and gratify the rest- Mark Twain

            DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
            I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
            I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
            Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
            Elavil and Ditropan-severe bladder retention
            Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
            Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.


            • #7
              My gynecologist put me on 25mg of Elavil and it made a huge difference for my vulvodynia.

              "You must be the change you want to see in the world." - Mahatma Gandhi

              "The most important medicine is tender love and care" - Mother Teresa

              Proud mother of Ahleia, born on April 9, 2007

              Diagnosed with:
              IC, OAB, Congenital urethral stricture, IBS, Vulvar vestibulitis, Heart murmur, Congenital cervical stenosis...but otherwise doing great!

              Currently in remission, but took the following for 3 years: Elmiron 200 mg., Elavil 25 mg., Detrol LA 4mg, Ovcon-35

              Health treatments/practices:
              Kripalu yoga, Chiropractic, Massage therapy and Reiki


              • #8
                I found out on my own what Vulvodynia was...told my gynecologists (one retired, another took his patients), and they didn't seem to register it. Even though I went in to see them often because of the pain, they didn't offer me anything for it. It wasn't until another patient of my 2nd gyn had similar symptoms that he looked further and found out about IC.

                A nurse once told me about an A&D personal care ointment for bladder leakage. That worked FANTASTICALLY but for some reason the company has discontinued making it. I've researched and can't find an internet connection to the company that distributed it (Schering-Plough Healthcare Products, Inc) It was distributed by them in Memphis, TN. I would like to connect with someone in the company and ask them to start making it again - and market it to IC/Vulvodynia patients. I would appreciate any leads that anyone could give me!


                • #9
                  Glad that you are gtting some relief.
                  West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
                  [email protected]