Is There a test for vulvodynia?????

[rita45]

i am going to see my gyno's associate on thurs for appt about this vulwodynia. I have ic and over the years have had alot of problems with yeast and vaginal irrritation and usually the culture comes back negative
for nothing other than yeast and one time a tric infection and a few bacterial infections

my regular gyno never saidanything about vulvodynia!
Can someone tell me if there is a test I can ask him to do to check this.

Iuse estrace cream and diflucan as needed and also started elavil
I take elmiron too 100 mg 2x a day.
I feel like a fool when i go there and they said it is not even red down below so to them that means nothing is wrong!
i still get stinging and irritation and sometimes even underwear hurt!
Any advice would be helpful!! I need to prepare for this appt!!
Thanks


I do not always have redness in the vaginal area either but a stinging /buring

[shel]

There isn't a confirmed test for vulvodynia but one of my drs did a test like the potassium sensitivity test for IC. HIs nurse put 2 cottonballs one at a time on my vulva and I told her really quick which was which!!
It is kinda like his own experiment though!
hugs

[kat]

Rita, I had the same problem as you. My obgyn kept looking and saying it wasn't so red and all vaginas have different colors and he couldn't see that I was on fire! I mentioned it to my cousin, Nina, and she said she'd had it in the past and was told to use a spray bottle to spray on her vulva each time after she peed and it helped her.

Instead of that, I just wet some toilet paper and rinse off after I pee and it helps a LOT!!! The urine itself is so acidic that it burns and just keeps getting worse if you don't wash it off each time.

Since I've been taking Elmiron and changing my diet, it's been a lot better, but every so often I get it again and I just start rinsing off each time and it goes away. Also, when it's bad after I dry off, I use an over-the-counter cortezone cream as a "barrier."

I'm pretty sure it's connected with IC and also pretty sure that the Elmiron (also Elavil), my change of diet and drinking lots of water to keep my urine less acidic has helped. Give it a shot! Good luck.

[rita45]

thanks kat

I will give that a try. i will keep the appt and see if this gyno thinks I'm crazy at this point i really don't care.

[lilac22362]

Hi Rita,
I saw a vulvar doc and he used a Q-tip to apply pressure and rub on different parts of the vulva and if you react with pain, it is considered positive for vulvodynia. He also went inside the vagina with the Q-tip. I also did not have any redness or fissures, which are common with vulvodynia. I was positive for vulvodynia aka VV. I was most positive around my skeens glands, which are located on the outer part of the urethra. My symptoms were burning and a rawness feeling when wearing undies or pants, anything touching my vulva can start a flare. I wear only skirts now and it does help. I still get some burning, but not as bad as when I first got diagnosed. I use a steriod cream three times a week and Estrace cream everynight. I use Neurontin also. I truly wish this would get better, my IC has responded well to Elmiron if only something would bring complete relief for my vulvodynia.
Rene

[kat]

Rita, I forgot to mention that I switched to Dove soap for Sensative Skin. Made a real difference.

[Ginny Doll]

I had the same test Renee had my OBGYN did not see redness but I responded with pain to the Q-tips and diagnosed with vulvodynia. We did not do the Estrace cream because my OBGYN wanted to try Neurontin first. I had immediate relief from neurontin. The vulvodaynia acts up usually if my jeans touch that area on some days. I am much improved and symptoms sometimes escalate before my period when my IC is the worst.At first vulvodynia felt like yeast but it wasn't and then it got to where I could not sit. It also felt like bees stinging the vulvar area.Between the burning IC and the vulvar stinging i thought I would go crazy. Yes, keep the appt for sure. The emergency room OBGYN missed my symptoms completely. It was my regular OBGYN who picked them up fast. Also I had been taking Pyridium and stopping this cleared up all the outside irritation Renee is speaking about. i use that DoveSensitive Skin soap too and nothing else. For about a month I slept at night without undewear which helped. Now undewear is not an issue but jeans are!! Even loose ones can cause me trouble if i wear them too long. It is really odd. I take elmiron also and Celebrex on bad days. I had to work up to the 300 mg dose of neurontin, 3 times a day. But now it is a lifesaver! Dizzy symptoms subsided in a few days! Good luck! Carolyn

[Ginny Doll]

Another point. You can't take Elavil AND neurontin. It is one or the other as i was told. We had tried Elavil for IC for me and I trouble with it. It also did nothing for my vulvodynia . But the neurontin for me helps both IC and vulvodynia. if the Elavil works for you it may address both problems if you give the Elavil time to work. They say a few weeks. I bet your OBGYN will make you hang in there with the Elavil a bit longer. But if you have Ealvil side effects, speak up!!! If you quit Elavil be sure you do it gradually reducing the dose and not cold turkey. Again good luck! there is relief from this condition!!! My guess is one or the other of these drugs will do the trick to give you some relief. Take care! Carolyn

[Ginny Doll]

Oh, I take elmiron too and you are not a fool! My OBGYN has seen many women with just vulvodaynia and very few with the IC-vulvodaynia combo. Sounds like we got both barrels here! Carolyn

[shel]

The cream that my dr prescribed for me that is just a plain vaginal cream with elmiron in it is helping my vulvodynia so much!! My pharmacist compounded it. I have only used it less than a week and it is already helping. He said since I instilled elmiron, he didn't think it would help my vulvodynia. He puts his patients that only have vulodynia on elmiron. So he said I was the first patient he would try this on and it is working. I never really "looked" down there with a mirror to see how red it was until I had to whenI inserted the cath. Boy was it red and it is already looking better!! Still not a pretty sight (ha) but not red at all!
HUGS
PS In all my 44 years -I have NEVER been able to use anything but ivory soap and white unscented toilet paper.