What exactly is Vulvodynia

[Marsupials]

HI,
I am newly diagnosed with IC. Found this sight a few days ago and Im trying to learn more. NOw i have read about Vulvodynia and I think i have some of the symptoms. MY doctor dosent really say much about it though. Can anyone tell me a little more about it and how you hanlde it?

thanks [img]confused.gif[/img]

[Brianna]

There are different types of vulvodynia. Mine causes burining all over my vulva and up inside my vagina. Both sometimes but mine mostly is my vulva only. It also can make it feel like you have a broom handle up inside you when you sit down if you are flared really bad. That is a description of mine but like I said there are different kinds and everyone is different with vulodynia just like IC --from what I have seen.

I follow the low oxalate diet and that is a big help. My dr pres me a cream with elmiron in it that I use on my vulva and it helps tremendously.

hugs

[Marsupials]

Thanks Brianna,
I am pretty sure i have that to. I read it in a book bu my urologist didnt really give me much. I like the cream idea. ILl have to ask about it.

thanks again

[slm]

Brianna,

What is the name of the cream with elmiron in it?
Maybe I could tell my dr about it, I get raw and nothing seems to work.

Thanks

[Kelli]

I have the same symptoms as Brianna, but have never said anything to my dr about it, with everything else I fear they will think I'm a severe hypochondriac. I wear plain white panties, use plain white unscented toilet paper. I don't use tampons or douch, it seems to keep the symptoms down a bit. Also, oral sex is out. Sorry for being so graphic. But it feels like I'm being murdered down there. Don't know how else to explain it.

[Brianna]

All compounding pharmacies have just a plain cream that they can add certain things to. My dr wrote out a pres for the cream with the elmiron. I am sure that they just open up the capsules and stir it up. I can ask my dr for the exact amount or how the pres is written, when I go back for my post op.
hugs
brianna

[Shelleynz]

Hi, I used to have vulvodynia too, burning, stinging and shooting pains in my vagina. Tagamet every day for at least 6 months keeps it 100% under control for me.
Shelley

[Marsupials]

Thanks everybody for your replies. IT has helped allott. everything that you have described i have. Even before o was diagnosed with ic i had these problems. As of late i thought my ic was getting worse, but im not sure if it may me the vulvodynia. We have been trying to get pregnant the last 2 months and thats when my symptoms increased.

Shelleeynz, what is tagamet? and which doc. did you get it from a gyno or uro?

Brianna Same 2 questions for you about the cream?

I would have private messaged you but i dont know how can anyone tell me how?

[kat]

I went to my uro yesterday for an annual checkup for IC. She said vulvodynia often goes with IC and suggested "Prelief" (like I'd never heard of it...duhhh!) HOWEVER, she recommended it because it would make my urine less acidic and less likely to burn my vulva (okay, so I was a know-it-all, but I didn't know THAT!) I thought the Prelief would only keep my bladder from hurting, but it never occurred to me that it would also help with symptoms from vulvodynia. Also, she prescribed estrogen cream because I was extremely dry and the skin was very thin. I'm in menopause and I didn't realize that I had a combination of dry vagina AND vulvodynia. So the estrogen cream is supposed to rebuild the skin there and also act as a barrier.

I mean, how do you know? What do we have to compare it to? Anyway, I'm mentioning this here for those of us who are in menopause...we have so many darned many symptoms, it's difficult to know what to attibute to what!!! If, because of age, the skin around the vulva area is thinning, then the symptoms of vulvodynia could be partly from tearing from intercourse and burning from the urine.

And by the way, KELLI, she said oral sex isn't recommended anyway for those with vulvodynia because of all the bacteria, etc., in saliva. Oh jeez, are they gonna take EVERYTHING away??? Like that's going to make me stop... [img]biggrin.gif[/img]

[Brianna]

Marsupials,
To private message someone, you just click on the little envelope at the top of their post.
The elmiron cream is a prescription from my dr.-he is a gyno but told my uro about it and she pres it now.
hugs
brianna

[Shane]

This is going to sound really wierd, but I think that I am experiencing some of these same problems, except with male genitalia. I was wondering if any of you have ever heard of a male form of this problem. It started shortly after my IC and has never gotten better or worse. I tried searching the internet, but I can't find anything that sounds like what I have. The closest thing I can find is vulvodynia. I feel strange asking this, but I don't know where else to turn. Doctors don't believe me.

[kat]

Doctors didn't believe me either until I found one who had heard of and knew all about it. Doctors hate to admit lack of knowledge...my own gynocologist actually did a biopsy on my vulva before he finally threw up his hands and sent me to a urologist. I was just lucky this uro knew about this. I hope you don't have vulvodynia, but if you do I hope you find a dr. that can help you faster than I got help. Maybe you should let your fingers do the walking and call around until you find someone who knows about it before going to another series of drs. Good luck!

[rnewman]

Hmmmm I wonder....

I just posted something in "HELP IM IN A FLARE!!!" Cause well, I needed help,
I thought I was in a flare...but I wasnt experiancing the usual urgency/frequency. And, I keep my urine extremely alkaline through diet so it usually doesnt burn when I pee. But I am IN SO MUCH PAIN......I have never been in bed all day because of IC until today....I took a muscle relaxer and that was it...now its worn off, and I dont feel quite as horrible and incapacitated from pain, but Im not getting off this couch or leaving my heating pad anytime soon... [img]frown.gif[/img]
If anyone reads my other post and thinks it may be vulvodnia, please let me know. Ive never felt this way before.

rachel

[pennysa]

Hi! I just came back from the doctor and he says I don't have IC, I just have Vulvodynia. Is this likely? Is my plan of action (diet and Prelief) the same? He gave me some oral medication I'm to take for three weeks. He said there's no cure. Sound familiar?
[img]mad.gif[/img]

penny

[Lisa in Iowa]

Hi All!

It has been awhile since I have been on the message boards....I didn't realize how much I missed the support until I just spent 2 hours on the computer reading everything that I have missed! (And I'm still not done!)

Anyway....I also have IC and vulvodynia. I somewhat follow the low -oxalate diet as well but what has helped me the most is that my urogyno prescribed an ointment (instead of a cream) w/3% estrogen mixed in it....I also wear only cotton underwear, cut the crotch out of my pantyhose (anything too constricting in that area seems to irritate me), and use only Charmin or Quilted Northern white toilet paper.

Regarding the ointment...my doc read somewhere that women w/this can have a bad reaction to the cream so that is why he prescribes the ointment...I've never had a bad reaction.

Before I was diagnosed, I had painful sex. I was diagnosed by the q-tip method....my doc would as me if it hurt when he touched a certain area of my labia...and let me tell you....it hurt mostly on one side. I also had burning on the outside of my labia constantly...thought I was going nuts. I was beginning to think I wouldn't be able to enjoy sex anymore but hallelujah....my sex drive is back and it feels wonderful again!!!

I agree w/kat and the issue of oral sex! I've given up chocolate...I sure as heck am not giving up on that! <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />

Take care everyone!
Lisa