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  • Help!!!

    For all patients who have vulvodynia and yeast problem I would like to know what helps you. I have tried everything the dr's have given me and nothing seems to help. I have always been sick a lot so I get prescribed antibiotics a lot and then I get yeast infections probably about 5-10 times a year. I have been seeing a vulvar specialist for almost a year now and been prescibed lots of meds. Some include elavil, neurotin, atarax, creams like niostatin, a steroid cream (i forget the name) and lidocain. I also use aquafora when I am really raw and cold packs. I am in a horrible flare right now, I can't even wipe when i go to the bathroom without it hurting. I have done nothing out of the ordinary.

    I am at the end of my rope. I can't take this any longer, I've been suffering for 5-6 years with this and nothing seems to help. I'm up for ANY suggestions. Let me know what you take and what helps you. My dr seems to be dismissing me and said just keep taking my meds and I will get better and everytime I go back I tell her I'm not feeling better, there is no change they just keep upping my dose of elavil and neurotin( when i was taking it) and atarax. They say to use the creams then not to. I wear only cotton underwear, rinse my clothes twice, wear loss fitting clothes, and wear no underwear to bed so it can breathe. I dont use any type of cleaner down there. Just water.
    Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

    Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

    Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

  • #2
    I demand two diflucan anytime I am given antibiotics, even if it is just from a regular doctor giving me medication for a sinus infection or something.

    I take one when I start the antibiotics and the other when I finish, if I didn't do that I would get a yeast infection.

    As far as vaginal pain in general, have you tried biofeedback or vaginal valium yet?? Both of those things have helped me. I am not cured of course, but better than I was before discovering these things. Best of luck.
    DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

    Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

    My Pelvic Pain Blog

    FB Fanpage for My Pelvic Pain Blog

    Comment


    • #3
      Hi again

      I meant to mention femdophilis is great or primadophilus reuteri (they both have the same important, unique lactobacillius strains meant for the vagina). There has been lots of studies on these particular strains. I don't know about femdophilius but the primadophilus reuteri you can buy at amazon or vitamin shoppe.

      When I feel "iffy" at all I take two a day, otherwise one a day. People who have gotten BV swear by it. I've been taking the primadophilus for the last couple of years and haven't had one yeast infection since starting....
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

      Comment


      • #4
        I take diflucan every week just to make sure I dont get a yeast infection. I'm currently going through PT but it isnt helping and I've already completed PT last year for the same thing.
        Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

        Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

        Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

        Comment


        • #5
          What worked for me was rx hemoriod ont, and not wearing anytime, loss pants, mostly 100% cotton pants.

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

          Comment


          • #6
            I have tried everything. I've seen at least 100 gyn. My symptoms get worse when I start my period. I'm at the end of my rope...
            Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

            Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

            Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

            Comment


            • #7
              It sounds hormonally connected in some way. Could you ask your Dr. about a birth control pill or a compounded hormone ointment? I don't know - just a thought.
              Teresa

              We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

              Comment


              • #8
                I have been on birth control for 8 years now... Ive taken EVERYTHING lol.. Right now I have an IUD and it is doing the best to control my pelvic pain, cramping, and bloating. Other BC like pills, shot, nuvaring haven't been able to control my period at all. Even though I dont bleed I still have pain like I am and my vulvodynia goes crazy. I am so itchy and I feel like I always have a yeast infection but I don't. I get red and raw for no reason. This happens every 2-3 weeks I have an apt to see a reproductive endocrinologist at the University of Michigan, which is where I see my IC dr and my gyn.
                Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                Comment


                • #9
                  Oh, I really hope the specialist can help you. I had that itchy feeling and kept asking them to test me for yeast infections (after I had a bad yeast infection). That did get better for me (knock on wood). But, I still have the clitoral pain that comes and goes all the time. I am sorry you feel bad - let us know if this doctor helps you. I used to live in MI.
                  Teresa

                  We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                  Comment


                  • #10
                    I just wanted to add that my urethral problems are definately linked to my hormones. I do have IC, although they are mostly urethral. When I have a flare though, it is definately my bladder too. When I flare, I get the burning in my urethra. Sometimes it radiates to burning in my anal area (it's all connected to nerves down there). I know you said you have tried BCP, but what really helps me is Loestrin 24. It is a very low dose BCP, & it is monophasic, meaning that I don't have any shifts in my hormones, which helps tremendously. I don't get a period anymore. An IUD is not going to help with the hormone shifts. Sometimes, my body does feel the hormone shift every few months & I flare even on the BCP, but mostly it keeps everything even keel. Just a thought. This disease is so tough to deal with. Everyone has their own "cocktail". I am also on Elmiron, which I think has really helped over the years as well. I hope you find something that works!

                    Comment


                    • #11
                      thanks I think that is something I need...continuous birth control where my hormones dont get any shifts.
                      Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                      Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                      Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                      Comment


                      • #12
                        Gina

                        Just wondering how you are going with everything now?

                        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


                        • #13
                          Well, things could be better. My VD is still out of control and im taking diflucan every week. I'm having abnormal bleeding and excessive discharge with no infection. My IC is somewhat under control but my pain is through the roof and i only have 5 more vicodin left and my dr wont give me anymore. Im waiting to see pain management in like 3 months....been busy with school and work!
                          Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                          Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                          Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                          Comment


                          • #14
                            Briza

                            in what way does prydium / azo help the vulva pain? Would this help clitoral pain too? I thought prydium was only to help bladder pain / acidity?

                            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


                            • #15
                              Thanks

                              So are prydium and azo exactly the same thing, I am not currently seeing a uro as I thought she wasn't very good. I don't think we have prydium here?
                              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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