I've gotta ask someone and I figure who better to ask than my friends here? Does anyone here have experience with vestibulitis or vulvodynia? Strange terms I know, but even stranger symptoms. My OB/GYN dx'd me with this after frequent complaints to my regular doc of repeated yeast infections and constant irritation... I finally went to the OB/Gyn specialist and seems that rarely is there yeast present (but that's the awful feeling I always get - you know that itchy raw ouch feeling) and nothing we've tried seems to help.

I've been doing a lot of research and have heard about changing to a low-oxalate diet (which is recommended since I take Topamax for seizures and migraines anyways) to help.

Anyone ever heard of this or have any suggestions?

Hello vodpop,

You might get some answers also on the sexual disorders and sexuality forum.

I know a few of the thoracic outlet syndrome group have started a thread there and they take a variety of meds. So they may relate in some way to your question.

I remember finding a forum of lovely people a while ago with this and other similar complaints...do a "google" and have a look around...I know there is one out there...If I remember its name or find it I will post here for you...dont give up , you are not alone and these girls were really really nice and I'm sure they would love to see you.

Okies...found the site I was thinking of...
http://www.tipna.org

there is also this onehttp://www.vulvodyniasupport.com

hope you find some new friends...good luck

Thanks for the reply Tonia, the last one was exactly what I was looking for. I see my doc again this week and will be discussing a few of the suggestions from that site with her. At this point I'm willing to try just about anything. Imagine my surprise when I read at one point the recommendation (from another site) that anti-convulsants were sometimes prescribed for pain relief and I'm already taking them-maybe they will work for this too! I'll just have to try adding a little more to my daily regimine and see...
Wish me luck.

Thanks again.

Hello,

I have a suggestion.

I had the same problem with constant irritation. Went to the doctors and compained, got creams and nothing helped. One day I was reading the directions on a Zinc Oxide Ointment tube which said may apply to area. It couldn't hurt, so I decided to use some. After urination spritz the area with water to get it clean and dry with paper then apply the zinc oxide. I am happy to say after a few days my irritation got better and now it is gone. I do apply every now and then when I feel the irritation coming back. I believe that my urine was irritating that area.

Hope this helps. . . . .

I've had that problem too with the raw irritation and itching . But the pain they speak of.. its not always there. My doc dx'd me with vaginosis. And he put me on amyltriptiline for it. Which is an antidepressant. But somehow helps the nerves. It doesnt help much for me though. So I dont know what he will want to do next. I hate talking about it. Its so embarrassing. But what do you do?

So much fun isn't it? I've just started a new anti-depressant to help with my moods and I'm hoping that it helps with the rawness.
I've gone to the low oxalate diet and can tell you that it does indeed help. It has made a difference. Now I'm cutting out wheat (not completely yet) and doing more rice products to see if it makes a difference, that will be the next big tell tale step. I'll let you know how it goes. Hopefully it works.

I have heard that the antiepileptic drug neurontin is sometimes prescribed for this condition (I'm half tempted to ask my neuro to switch me to that one except that my current AED is working so well I don't want to mess with a good thing).

Hi,
I started reading your thread wondering if your problem was going to be a prolapse. I've had a bit of experience with that.

But... no, something quite different.

By the end of the thread, when two of you had mentioned antidepressants, I wondered if the ob/gyn problem could be nerve related.

I wondered that because there are a lot of nerve symptoms when someone is low on vitamin B12, and a huge symptom of low B12 is depression.

If you aren't taking Methylcobalamin, that's the best form of the vitamin to take, then I would get some if I were you. I'd get the sublinguals just in case you have no intrinsic factor, or not as much as you need.

Another way to tell if you have low B12 is if you have ridges on your fingernails, or if you are losing the moons on your fingernails. If you have either of those things, then check the whole list of symptoms.

Vitamin B12 is much more tricky than the other B vitamins because the process to get it out of food is complicated and as we age our ability to do it effectively decreases. So slowly, very slowly over time we have less and less B12 in our bodies because it slowly leaches out of all the muscle and tissue where it's supposed to be.

The other thing is that stress seems to use it up really fast.

When you get the methylcobalamin, keep some notes on your symptoms. That way you'll be able to see what it actually does for you.

Since low B12 affects memory, keeping notes can be quite revealing. In a very good way.

I hope this uncomfortable problem goes away for you!