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Vulvodynia???
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Vulvodynia???

Hi again ladies...I posted on here a little while ago but have a follow up question.  I was being treated for yeast infections for about 2 months- I used monistat 3 two times, one dose of diflucan, and terazol 3 cream one time.  Although my internal itching has finally seemed to go away, I still have a slight burning feeling around my vagina/perenium (sp?).  Sometimes there is also a slightly painful feeling that feels like maybe the skin has a cut on it or something, maybe like a raw feeling yet visibly there is nothing there.  I've heard some of you talk about vulvodynia and I have done a little research on it and quite frankly it's making me pretty nervous.  It seems like most women don't get any relief from the symptoms and further more, it seems like most doctors either don't know what it is or don't know what to do for it.  I have a doctor's appointment this week and if I tell her about the burn/slight pain/rawness I'm afraid she will tell me it's yeast and give me more medicine for that, when most of the vulvodynia stories i hear are just like that and seem to be caused by all the yeast medicines.  Do you think vulvodynia could be something I have or maybe just a reaction from the yeast infection or medicine?  What treatments have given you relief?
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Avatar_f_tn
Has your doctor actually tested you for yeast, or is she just assuming that's what it is?  If you aren't happy with what you're being told, ask to be referred to a specialist.  I am under the care of one right now who specializes in pelvic pain and vulvar disorders.  He did a swab test on my vulvar region (which I must say was most uncomfortable) and believes I may have vulvar vestibulitis.  I have to go back in on November 3rd, because he wants to run some other tests as well.  What are all of your symptoms?  The reason I ask is the specialist told me vv a lot of times is found in women who also have interstitial cystitis, IBS and Fibromyalgia.
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Avatar_n_tn
emsuc,  That is almost exactly what happened to me.  Resistant strain, seen once, cultured once. Symptoms kept returning. Tried monistat, diflucan, teraconazole, then boric acid forever (at least it seemed that way).

While using the boric acid, my symptoms would go away, but as soon as I stopped they came back.  'Just stubborn, you need a longer course of treatment'.  Well, after nearly 14months of using the darn things, my symptoms were creeping up in intensity.  Off white, pasty discharge that burns, 24/7 burning of the lower vulvar area, and only a slight reddness in the area of burn. Couldn't ride my bike, hike or have sex. Working at the computer was becoming incredibly uncomfortable.

Finally after stopping the last 6mo treatment of boric acid, symptoms back to severe, I was officially diagnosed with vulvodynia.  I was put on lidocaine 1x at night, and estrace, an estrogen cream 1x in the morning (to help rebuild and strengthen the tissue). Plus I went to a pt who knows something about pelvic muscle disfunction and vulvodynia.  At first, the lidocaine can burn worse than your symptoms, but within 15 minutes can start to bring sweet relief. I also found that the estrace burned a little when things were inflammed.  The pt showed me that my pelvic floor muscles were in a constant state of tension, it was really high around 15-18uV. The normal resting rate is around 2!

Here I am 6 weeks later, pretty much free of pain. I went for a 1hr mtbike ride this weekend with very little discomfort. I think I am one of the lucky ones. There is hope and treatment. It is up to you to be informed and to make sure your doc is informed or willing to listen and learn. If not, go to another doctor and don't stop looking for one until you find one that knows about this. Just recently in the news, it was estimated that 1 in 6 women suffer from some form of this syndrome, i.e. close to 13 million women. That's scary considering so few docs are aware of this.  

Good luck.
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Avatar_n_tn
Each time i went to the doctor she took a sample and looked at it under a microscope- she did not culture it.  The first time she said she saw some yeast.  The second time she said she did not see any yeast but saw some white blood cells which she said was indicative of an infection but I tested negative for everything else.  I don't think I have any of the other problems that you mentioned.  My symptoms started when the internal itching (that I thought was a yeast infection) finally went away about a week ago.  There is like a burning feeling around the opening to the vagina (on the outside) and on the perenium.  It sometimes also feels like the skin there is raw or has like a cut but there is nothing there.  It's not really painful to the touch just a little irritated.  That's why I'm not sure what it could be- whether it's still be the infection, a skin irritation due to the infection, or vulvodynia.  Also, I just feel generally heavy down there, I'm not sure how to describe it and there were a couple of days when I felt like I had to urinate often even though I wasn't drinking that much. Thanks so much for your advice!
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Avatar_f_tn
Hi there.  I was actually lucky, I guess.  My gyn office referred me to a specialist after 2 years of poking and proding without any diagnosis.  Your gynecologist's office didn't know of a specialist?  That seems odd.  Even if there isn't one close by, they should know of one within a certain radius.
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Avatar_n_tn
Yeah,  the wait time can be really infuriating.  I used red wine and a frozen water bottle held in place to ease things while I waited.

I got lucky. I work in a large medical university / hospital, and had some friends that had been around here a long time that I could talk to to find out about those docs. I also have a really great pcp who will refer me to anybody I feel I need to see.

  Join one of those yahoo groups and ask them if anyone knows of a doc in your area. There are women from all over on those boards.  The vulvar disorders group has more folks on it.

Simple things that might help, I'm not sure what you do already.
Plain white cotton underwear. Do not wash the are with any type of soap, and try not to get your shampoo on it either. Use a laundry detergent that is free of scents and dyes. No dryer sheets. Loose clothes, jeans suck.  I've recently discovered Rt66 drawstring knit pants. Very comfortable and look good enough for work.  

If you want to yack off of the boards, you can e-mail me at
free_spirit_05158***@****
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Avatar_n_tn
Thanks free spirit...it's good to know that some women have actually had relief from it!  Just wondering, and this is to anyone...how did you find doctors that knew what they were talking about/specialists?  I've been calling around asking and I keep getting the same response when I ask if anyone at their office specializes in chronic vaginal infections- they all say well no one specializes in it but they have some experience with it (not to mention that the appointments they do have open are for so far away!!!)
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Avatar_n_tn
thanks for the advice ladies- i'm happy that you've figured out what treatments work for you, gotten some straight answers, and i'm open to suggestions...i have an appointment thursday and i will let you all know what happens.
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Avatar_n_tn
Did anyone experience internal itching with vulvodynia?  Of course, the internal itching is back so I don't know now if I'm dealing with my ongoing yeast infection or still maybe vulvodynia.  I was also curious if anyone else has had this dull itch inside that comes and goes and is more persistent/noticeable later in the day?
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Avatar_n_tn
At first, I had the internal itch, now I don't. Symptoms do intensify as the day progresses, by the afternoon I would be a wreck.

If you are showing signs of a YI, don't treat. Try to beg your way into the doc's to get swabbed for a culture.  If it is yeast, and it keeps coming back, then maybe you have a resistant strain.  If it isn't yeast, then you  need to find someone who works with vulvodynia to start to try and figure out what will work for you.
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Avatar_n_tn
Well, I went in yesterday to a new doctor and they're finally doing a culture for me.  What will the culture pick up?  Does it pick up yeast and bacteria?  Figures though that when I went in I felt pretty good and she said she didn't really see much going on, which seems to always be the case until the evening when it seems to start bothering me.

When I went to my first doctor she looked at the sample under the microscope and said there was no bacteria- is it possible that it just wasn't showing up as my new doctor said it might be bacteria and not yeast.  Some of you had mentioned a "yeast imbalance"- would the culture pick up on that?  My new doctor said if it is yeast she's going to treat me with a 14 day treatment (I'm not sure of what)...many of you have mentioned vulvodynia as a result of continued topical creams and whatnot and i'm going to be a little nervous to use more creams.  She also gave me a cream for a bacterial infection that she said I could try if I wanted to, but again, I'm hesitant to use more topical creams that I'm not sure will help.  Any advice?
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Avatar_n_tn
Does anyone on here with Vulvodynia experience actual cuts? I do. The last one I had persisted for 13 days. It may also have been due to the Aldera cream I was using.

This is my situation:

Painful burning/itching/found a sore all started 3 months ago.

Sores would come and go but the pain persisted for all this time (since July/Aug '06).

Cultures/blood tests came back Neg for STD's including Herpes 2.

Pap smear came back Neg for HPV in Cervix.

Pap smear came back Pos for High Risk HPV on Vulva... this supposedly doesn't cause symptoms but can lead to cancer.

Gyno put me on Aldera cream to clear HPV which he said was causing Vulvadynia symptoms... Aldera side efects are cuts/sores and of course I got those side effects.

Came off Aldera after just 2 weeks of treatment, cuts cleared and pain is subsiding... so is my anxiety... HOWEVER... I am too chicken to go get another Herpes blood test. Have to do that.

I know it really stinks to have vulvadynia, but if there is anyone out there with Vulvadynia and painful cuts/sores please post a comment! I am holding on to the hope that vulvadynia is all I have... and I am going to get my blood drawn once and for all this week.
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Avatar_n_tn
Does anyone on here with Vulvodynia experience actual cuts? I do. The last one I had persisted for 13 days. It may also have been due to the Aldera cream I was using.

This is my situation:

Painful burning/itching/found a sore all started 3 months ago.

Sores would come and go but the pain persisted for all this time (since July/Aug '06).

Cultures/blood tests came back Neg for STD's including Herpes 2.

Pap smear came back Neg for HPV in Cervix.

Pap smear came back Pos for High Risk HPV on Vulva... this supposedly doesn't cause symptoms but can lead to cancer.

Gyno put me on Aldera cream to clear HPV which he said was causing Vulvadynia symptoms... Aldera side efects are cuts/sores and of course I got those side effects.

Came off Aldera after just 2 weeks of treatment, cuts cleared and pain is subsiding... so is my anxiety... HOWEVER... I am too chicken to go get another Herpes blood test. Have to do that.

I know it really stinks to have vulvadynia, but if there is anyone out there with Vulvadynia and painful cuts/sores please post a comment! I am holding on to the hope that vulvadynia is all I have... and I am going to get my blood drawn once and for all this week.
Blank
Avatar_n_tn
Does anyone on here with Vulvodynia experience actual cuts? I do. The last one I had persisted for 13 days. It may also have been due to the Aldera cream I was using.

This is my situation:

Painful burning/itching/found a sore all started 3 months ago.

Sores would come and go but the pain persisted for all this time (since July/Aug '06).

Cultures/blood tests came back Neg for STD's including Herpes 2.

Pap smear came back Neg for HPV in Cervix.

Pap smear came back Pos for High Risk HPV on Vulva... this supposedly doesn't cause symptoms but can lead to cancer.

Gyno put me on Aldera cream to clear HPV which he said was causing Vulvadynia symptoms... Aldera side efects are cuts/sores and of course I got those side effects.

Came off Aldera after just 2 weeks of treatment, cuts cleared and pain is subsiding... so is my anxiety... HOWEVER... I am too chicken to go get another Herpes blood test. Have to do that.

I know it really stinks to have vulvadynia, but if there is anyone out there with Vulvadynia and painful cuts/sores please post a comment! I am holding on to the hope that vulvadynia is all I have... and I am going to get my blood drawn once and for all this week.
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Avatar_f_tn
I have the same problem which has occurred for about a month. My GYN says I am suffering from Vulvodynia Intestitial Cystitis which is caused by an infection surrounding the bladder (don't be alamed). She has cured many of her patients and says I will be next. It is something that is very common in women. She prescribed:
Elmiron 100 mg for me to start taking as of today.
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Avatar_f_tn
Just wanted to add what has helped me. I suffered from undiagnosed vaginal pain for almost a year before I was diagnosed with vulvodynia. My doctor thinks it was caused by an e.coli and/or herpes infection. The virus damaged the nerves. Well, I have been taking Lyrica for about 9 months, and it has been a life saver. I have almost no pain. I feel 99% better!
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