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  • Do I have vulvodynia?

    Hi everyone!

    After many doctors and antibiotics I was diagnosed w/IC in 1/07. They put me on Elmiron and I started getting vaginal irritation and alot of discharge. I thought the Elmiron was causing it so I stopped. I again am going through many antibiotics/creams for the burning pain/irritation and discharge. I have seen 2 gynes for this and the last one told me to just keep using the metrogel everytime I have symptoms (which seems like always). He said I have chronic bacterial vaginosis. Could it be vulvodynia? Are there any good gynes in the Chicagoland areas that could help me? I am very frustrated between the two conditions. HELP!

    Thanks!
    Cindy
    William Ellery Channing:
    Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.

  • #2
    to the board. Were you given antibiotics for the discharge? If so, do you remember what kind? Some antibiotics can cause INCREASED discharge and irritation (yeast) and that makes the whole thing that much worse. I'm wondering if you've tried Monistat, etc?

    Also, chronic bacterial vaginosis can cause the symptoms you described, so your doctors might be right, unfortunately.

    It's quite possible you do have vulvodynia, but it's impossible to tell you flat out thats what you have on the message board. I'm sure you've probably tried the OTC yeast preparations but sometimes the most obvious thing is the last thing we think of!

    Again, welcome to the board!

    Sandy
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

    Comment


    • #3
      Hi cindy:
      ***Symptoms of bacterial vaginosis are a fishy scent from the vagina, a thin grey-white discharge, and mild itching. Where you tested and given a diagnosis of BV? If all you had was a vaginal culture done-that is not enough!
      You need a vaginal PH test and clue cells need to be examined under a microscope. From what I have read Metrogel helps. Also antibibiotics Flagyl and clindamycin for 7 days. I also read that BV often comes back and can be a real pain. Vulvodynia can only be diagnosed when there really is nothing they can find wrong causing the symptoms-no BV, no yeast-normal ph-nothing is there--yet there is pain. So if in fact they are SURE you have BV then it can't be vulvodynia until that condition is truly cleared up and you STILL have pain. Pain for no apparent reason. I hope this helps you some!
      Debe2
      Premature ovarian faliure 1996-age 39
      Put on ortho novum 7/7/7 and premarin cream
      Began HRT Feb 2006
      Current meds:
      Estrace oral: 0.5 twice a day
      Prometrium 100mg bedtime
      premarin cream for vulva
      vagifem
      Aciphex 20mg
      diflucan monthly-stopped this July 2007-fingers crossed!!
      gabapentin 900mg-so far

      Comment


      • #4
        Thanks for the reply.
        I was put on metrogel, flagyl and doxycyclene. My problem is not yeast, but an imbalance in normal bacterial flora. I dont now if its related to any IC related conditions. I am getting very frustrated!

        Thanks

        Cindy
        William Ellery Channing:
        Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.

        Comment


        • #5
          My ph was normal and my 1 out of 3 cultures was normal the others showed an "imbalance".

          Thanks for the reply
          William Ellery Channing:
          Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.

          Comment


          • #6
            Cindy,
            When my Vulodynia flares up I do not have any discharge just burning, itching and swelling....
            Hugs
            Ronda

            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


            Link to Patient Handbook:
            http://www.ic-network.com/handbook/

            Diet Reference Sheet:
            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

            Meds I have Tried:
            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
            Lexapro< Bad reaction to this med!
            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

            Dx With IC in Nov 2006 with Hydro/Cysto
            Hydro/Cysto Caused Bladder to Rupture.

            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



            ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

            Comment


            • #7
              ***If you had a normal ph you don't have BV. A culture will always show some bacteria--and antibiotics will certainly cause an imbalance of flora because it kills the good kind! I'm no Dr, but just doing a culture is not enough to diagnose BV. Hopefully Sami will see your post and respond-she is very knowledgable about all these things. She will give you advise you can trust! Hope you feel better soon. All of us here know how hard it is to go through this stuff!
              Debe2
              Premature ovarian faliure 1996-age 39
              Put on ortho novum 7/7/7 and premarin cream
              Began HRT Feb 2006
              Current meds:
              Estrace oral: 0.5 twice a day
              Prometrium 100mg bedtime
              premarin cream for vulva
              vagifem
              Aciphex 20mg
              diflucan monthly-stopped this July 2007-fingers crossed!!
              gabapentin 900mg-so far

              Comment


              • #8
                Vaginal Discharge

                Debe2 gave you excellent overview on BV and what needs to be done to diagnose it. If your physician has not done cell cultures, a wet preps to try to find out just what is "unbalanced" then this is critical. If he/she wont do it, find a new doctor who will help you sort this out.
                You can have an imbalance with Lactobacillus, yeast, mobiluncus, strep. All these critters inhabit a normal vagina, but dont dominate or overgrow. In BV you dont have enough lactobacilli which are a natural disinfectant and produce acid in the vagina. You can also get too much. If your vaginal PH is over 4.5, if you have clue cells under the microscope, if you have certain appearing discharge that clings to vaginal walls, then you probably have BV. If not it could be a lot of other things.
                For reoccurant BV you should treat the sex partner also.
                Dont you just get sick and tired of having to always think of what is going on in your crotch? All of us with various forms of VV or IC just feel like its always something.
                You will get this figured out, you may have to find a Doc that is a vulvar specialist. And press your present Doc for more information on just what they mean by "unbalanced" and just what they think is "unbalanced?"
                Sammi

                Sammi

                Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                Diagnosis: IC, PFD (both in remission)

                Comment


                • #9
                  Why do women with IC have vaginal/vulvar issues too. If one wasnt bad enough! The MD said the look under the microscope was normal and ph was normal. The culture comes back as an imbalance. Not alot of lactobacillus and more giadella (something like that). I dont know where to turn next.

                  Thanks
                  Cindy
                  William Ellery Channing:
                  Difficulties are meant to rouse, not discourage. The human spirit is to grow strong by conflict.

                  Comment


                  • #10
                    Cindy

                    If I was in your situation; after the next round of vaginal medication and I am sure the infection has cleared, I would go to the nearest compounding pharmacy in my town or call Womens International Pharmacy at their 800 number and ask for a 30 days supply of lactobacillis vaginal inserts. Then I would use one every other day, and then one twice a week. I would also take a high grade probiotic like Three Lac orally.
                    Be certain your estrogen level is in the right range, as if you are low on estrogen your vaginal ecosystem wont work right.
                    If you are taking a lot of drying meds (Most ICers are) that is not helping the situation and you may need to use an over the counter moisturizer for the vagina called RePhresh.
                    Best wishes, you will get this under control, just maybe as fast as you would prefer.
                    Sammi

                    Sammi

                    Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                    Diagnosis: IC, PFD (both in remission)

                    Comment


                    • #11
                      Ronda

                      You might have already answered this question before, but my symptoms are burning, itching and swelling also with no discharge. What medications do you take for this and what other treatments do you do to help flares? Do you have a problem with dryness?
                      Diagnosed with IC - March 2007
                      Diagnosed with vulvodynia - June 2007
                      -Lots of prayer
                      -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
                      -Taking Prelief as needed (stopped because of pregnancy)
                      -IC diet

                      Comment


                      • #12
                        Kristi,

                        What has helped me the most was Elavil, but I had to quit taking them due to lots of weight gain.. I am now trying Tompamax just starting with 25mg for now.. Another thing that has helpd me is Cymbalta its for my depression but have found it helps my Vulvodynia another thing I use is Lidocaine gel it helps so much when im flaring..I have noticed to that an antihistimine helps also when I flare .. Hope this helps..

                        Ronda
                        Hugs
                        Ronda

                        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                        Link to Patient Handbook:
                        http://www.ic-network.com/handbook/

                        Diet Reference Sheet:
                        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                        Meds I have Tried:
                        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                        Lexapro< Bad reaction to this med!
                        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                        Dx With IC in Nov 2006 with Hydro/Cysto
                        Hydro/Cysto Caused Bladder to Rupture.

                        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                        Comment


                        • #13
                          Kristi

                          Burning, itching and dryness could be a symptom of a lot of things? The swelling is probably the result of the burning, itching, dryness irritation. Without a trip to the Doc's and some investigation it would be hard to speculate as to the cause?
                          If you are menopausal or pre-menopausal one would check estrogen levels to be sure you are not just low on estrogen? You would be checked for yeast and other critters that overgrow in a dry environment as well as bacterial infections?
                          You are also taking medications that cause dryness in the whole system, so that could be part of the picture. You could have a contact dermatitis from soap, toilet tissue, or even some brands of pads? Be sure and run your underwear (cotton I hope) through another wash cycle without anything in the water to be sure all soap particles are out?
                          For simple trial and error, you might look into using RePhresh over the counter vaginal moisturizer which will keep the PH in a good range. RePhresh only treats symptoms, not causes which only your physician can check out.
                          Sammi

                          Sammi

                          Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
                          Diagnosis: IC, PFD (both in remission)

                          Comment


                          • #14
                            RePHresh

                            Can one use Rephresh if you have VV? Isn't it too acidic for us?
                            I used it in the past but since I developed V V at the end of last year, I stopped Rephresh and boric acid inserts.
                            I will probbaly use Rephresh again to try to keep yeast at bay. I know it doesn't cure an infection but since ALL the doctors I've seen can't find a cure for my chronic yeast, What are my options?. I'm sick of seeing yeast all the time and I'm still trying to find a maintanence program that will keep it out of sight. Unfortunately I don't have answers. Doctors run out of answers so I have to do this search on my own.
                            BTW my yeast doesn't show in cultures but it is there everyday...
                            My infectious deseases gyno says that a negative culture doesn't mean you don't have an infection. May times, this bugs just don't grow when tehy are culture or they die before they get cultered (?). He is been working with me for almost 2 years.
                            While other Gynos I've seen, once they get the result for a negative culture, they think that's it. You are fine. There's nothing to treat! It is very frustrating.
                            Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
                            UTIs since mid 2004
                            Recurrent yeast infections since mid 2005
                            IC dx 3/2006
                            V V dx 12/2006
                            Other conditions: IBS, allergies, dry eyes.


                            Current IC medications:
                            Elavil (since 12/06) 10 mg;
                            Cysta Q (since 5/07)
                            Rephresh acid jel every 3 days
                            D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
                            Probiotics Femdophilus or other brands
                            Gy-Na-Tren for yeast infections (started using it as needed since 2010)
                            Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


                            Past Meds and why I stopped them:
                            Elmiron: March to September 2006: headaches
                            Lyrica:2 weeks in 2006: headaches
                            Cystoprotek: from Jan to April 2007: nausea

                            Femcon Fe (2/07 to 10/07):caused spotting/bleeding
                            BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


                            "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

                            Comment


                            • #15
                              Is rephresh different then Replens? I am using Replens twice a week and do not feel as dry the next day but once day two and day three roll around, I feel pretty dry again. I think it is dryness because I have no vaginal discharge and it burns. My gyno put me on some Premarin cream about a month ago for a week and I did not notice a difference at all. He told me to stop taking it. I am wearing cotton panties, white and I have rinsed them a second time without soap. I do not think that I am allergic to my detergent, toilet paper, soap, etc. because I do not itch every single day. I go in spurts. I think it is hormone related. I am going back to the gyno on June 6, and am going to see my uro on June 5. Could my nerves just be sensitive down there from damage because of my yeast infections? Is there anything over the counter I could take? I am going to start taking AZO yeast tonight and see how that works. Thank you for all your responses!!
                              Diagnosed with IC - March 2007
                              Diagnosed with vulvodynia - June 2007
                              -Lots of prayer
                              -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
                              -Taking Prelief as needed (stopped because of pregnancy)
                              -IC diet

                              Comment

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