View Full Version : Do I have vulvodynia?
05-22-2007, 09:10 AM
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!
05-22-2007, 09:28 AM
:welcome: 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!
05-22-2007, 09:47 AM
***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!
05-22-2007, 09:50 AM
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!
05-22-2007, 09:52 AM
My ph was normal and my 1 out of 3 cultures was normal the others showed an "imbalance".
Thanks for the reply
05-22-2007, 09:53 AM
When my Vulodynia flares up I do not have any discharge just burning, itching and swelling....
05-22-2007, 10:08 AM
***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!
05-22-2007, 03:49 PM
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?"
05-23-2007, 10:19 AM
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.
05-23-2007, 02:11 PM
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.
05-23-2007, 03:38 PM
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?
05-23-2007, 04:36 PM
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.. :angel:
05-25-2007, 06:15 AM
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.
05-25-2007, 10:21 AM
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.
05-25-2007, 01:34 PM
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!!
05-25-2007, 01:34 PM
All this burning problem reminds me of myself. I have hone to a gyno, ER, my primary doctors and uro. I have had metrogel for a just in casae I had an infection that didn't turn up in the tests. I have been given a steroid cream that hasn't helped either. I have labia burning but no itching and no swelling. It just feels really irritated. I even asked the uro about having VV, but I think he really doesn't know about this. I need to see another gyno sinch my primary care doctors have already tried but haven't succeeded in relieving my burning.
05-28-2007, 05:55 AM
Kristi, you can google Prephresh and go to their main website and see it it is similar to replens. I have never tried Replens. Yes, recurernt yeast infections cause skin and nerve damage (my case). You need to have a culture to make sure you are not having a curent infection.
05-28-2007, 02:40 PM
Kristi if your vaginal symptoms are hormonal it will take more than one week on Premarin cream to solve the problem. It takes using a vaginal estrogen daily for two weeks, then twice a week indefinately. It takes about 4-6 weeks for the vaginal cells to become estrogenized, although after about two weeks things will be noticably better.
RePhresh claims to keep the vaginal PH in the correct area, and also moisturize, I have seen RePlens advertised only as a moisturizer.
Even though women take oral or topical estrogen most of them still need estrogen vaginally along with it.
05-28-2007, 03:14 PM
Im still trying to figure out what is going on. I have alot of swelling/burning and discharge. My gyne says I have Bacterial Vaginosis which I have been treated for 5x now and it still keeps coming back. I will be going to my urogyne next week hoping he has some ideas. I am still very frustrated with all of this. I am taking lactobacillus orally and ALOT of yogurt.
VERY FRUSTRATING and I feel guilty because I am young and my husband is being so patient. How much longer can he wait?
05-29-2007, 04:26 PM
Sammi's suggestion to contact Womens International Pharmacy at their 800 number and ask for lacotbacilli supoositories is a good way to start trying to get your flora in balance, Refresh is a good option too, you should discuss it with your doctor. Also, I've learned from a thread on "Fem Dophilus" by Jarrow contains L. Reuteri and L. Rahmanous (sp?) which help a lot to balance vaginal flora and some women even insert the caps (look for that thread under Antibiotics section of the IC forum). I didn't find that brand and ended up getting one by Nature's Way which contains L. reuteri. I also take VSL#3. But I ordered Fem D and will prbbably try it vaginally at some point.
I hope you get well soon. I understand what you are going through b/c I also get vaginal infections and have a Boyfriend.....:grouphug:
05-30-2007, 02:41 AM
My gynecologist said I had bacterial vaginosis and gave me a standing prescription of metro gel and said to use it on my own when symptoms occured. I have swelling and sores down there. The sores are not viral or bacterial. Is this part of vulvodynia?
I went to my urogyne for a second opinion. He says it looks like vestibulitis and the sores may be a skin disorder. (Mild form of plantus?) I go for a biopsy today. The urogyne reviewed they gynes records and looked under the microscope he says the discharge is White blood cells not bacteria. He told me to stop the antibiotics. He also said not to look on the internet for the skin disorder and if I have plantis it is a very mild case. The internet will only scare me.
No treatment options dx yet till the biopsy results come out. He did mention the swelling looks like vestibulitis.
Who should I believe? Things seem to be getting more complicated. Is this all related to the IC? I feel like my body if falling apart.
Thanks for listening.
05-30-2007, 05:15 AM
If it were me I would stick with Uro's idea, I can follow his thinking and it sounds logical. You need to follow up with him to see just what is going on down there.
As for the Gyn. whose idea of helping you is giving you a standing RX for Metrogel to use "on your own" sounds like a real loser. If I were in your shoes I would fire him and get a new Gyno, that one sounds lazy and mentally dull, and if he practices medicine the way you say, at some point he is going to have a real problem with a patient and it wont be pleasant.
05-30-2007, 08:38 AM
Thank you for the words of encouragment. I will stick w/the urogyne. The biopsy did not go very well. It was very painful and I had alot of bleeding d/t all the inflammation. I now feel worse than before.
I am very sad today.
05-30-2007, 11:00 AM
Biopsys are never pleasant. The good news is your Doc sounds like he is going to get to the bottom of this, and that must take a huge amount of stress off of you? When the biopsy comes back it will either give you a concrete direction or rule out something so you can go on and eliminate the next likely cause.
If you have never taken Elavil, you might ask your Doc about it as it really helps calm the nerve endings. I found it very soothing for both VV and bladder overactivity. It can also be compounded into a cream to apply to the vulva.
Keep us posted, and I know things will get better for you. VV symptoms usually wax and wane, which is what makes us all so crazy because we can never be sure what is working or not?
05-30-2007, 03:45 PM
I also have white d/c and my gyno today didn't find BV or Yeast under the micorscope, which for me I considered as good news. He also found a lot of white blood cells and I asked what that means. He said it is an indication of irritation and inflamation so he put me on valium for 10 days.
After that I can start using refresh and maybe lacotbacili acidphilus. Which he is not very convinced but he is open to it.
How long have you had these vv symptoms?
I've been dealing with V V since the end of last year and comparing my symptoms in my calendar I've seem improvement with pain. I used to sit on ince packs almost everyday, now just a few times a week, sometimes less. Any improvement is a big step for me. Try not to get sad instead think that you'll get better that way you'll help yourself to get better. We are here for you.
05-31-2007, 10:50 AM
***Sammi: You said Elavil can be compounded into a cream--I'm very interested in asking my Dr about this! How much of the drug goes into the cream you used? Do you use it every night or just during flares? Can it get into the bloodstream? I ask because I am on gabapentin right now-not sure how I would be effected by the two drugs.
***Another question: If I wanted to stop gabapentin ( you have to stop this drug gradually-not cold turkey ) and try elavil-would I have to be off the gabapentin completely first? Or do you think I could be taking the elavil while tapering off gabapentin? I know you are not a Dr-just want to know what you think.
06-02-2007, 11:05 AM
Thanks for all the encouragement. I am now in pain have stiches on top of the burrning. Waiting for the biopsy results. To see why I keep getting all this immflamation. I am praying that it will all get better. THank GOD my IC is not in a flare so I can deal with one problem at a time.
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