Vulvodynia?

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I have this. Does anyone else on here have this or heard of it? It's a nerve condition down there.

Never heard of it. Had to Google it. I feel bad for you. That sounds really awful.

errr ummm thanks I guess? Don't know how to respond to that comment exactly. Thanks for looking it up though.

EDIT: "The pain in your pelvic area has lasted for months. You're so uncomfortable you can hardly sit. Having sex is unthinkable. Nothing alleviates the pain, burning and irritation, at least not for long."

Is that what you read? Because that's a very severe case of it. I've actually never heard of anyone having it that bad. I only get pain during and after sex basically. I have to use lydocaine. If I don't use lydocaine when I have sex then I'll be in pain for a couple of days after.

Sorry, did not mean for that to come across wrong. Aspie/Empathy...well, ya' know? I seem to be saying all the wrong crap today anyway. Here and real life.



Yes, and some other stuff. Thank you for clarifying.

Well I have people saying that stuff to me all the time when I tell them I have certain things. It's not you. lol I just don't know exactly how to respond to someone telling me they are sorry for me. It makes me feel kind of awkward. I think it's more my issue than yours.

No sweat.

I wonder if it's like interstitial cystitis. I thought I had that, but it just turned out that my diet was such that it was matabolizing as acid. I wonder if that could help you.

You can look up the diet on the Internet, but they may make it more complex. The idea is that you generally should have 80% alkaline in your diet and 20% acid to be healthy. Acid and alkaline foods are defined as how they metabolize. So, for example, lemon actually metabolizes as alkaline, even though out of our systems it's acid.

If you want to try it (and it's good for your overall health, so it's good to do anyway), just prefer:

lots of fresh salad greens
cooked greens
most vegetables, preferably raw
most fruits (excpet for prunes and blueberries--these are acidifying)--berries, grapefruit, and lemons are great
avoid sugar, soda, coffee, black tea (a little green tea is ok)
take it easy on the meat, eggs, and dairy (yogurt is one dairy that is neutral)
try to stick with whole grains, better yet prefer yams and acorn squash for carbohydrates
lemons, avocados, watermellon, raw almonds, papaya are especially alkalinizing
Oils: Prefer virgin olive oil and flax seed oil
avoid all sugars, except for xylitol (low glycemic natural sweetener from fruit), brown rice syrup, and raw honey

It's worth a try and may help your overall health.

However: be persistent in looking for an alternative cure. I suffered with interstitial cystitis for 17 years because doctors can't make money on telling you to follow an alkalinizing diet. They tend not to believe in nutritional cures. If you are persistent in looking into alternatives, I believe you could find a solution faster than I did. Believe in yourself and please be persistent in your search. Good education for all of us for you to have the fortitude to ask for help here. All the best.

I have vulvodynia....well actually vestibulodynia, which is a form of vulvodynia that only effects the vestibule. Right now it's actually sort of in "remission" if that makes sense.......when it's here it's horrible.

It doesn't hurt 24/7 like with vulvodynia, just when I try to have sex, during sex and after sex, although it could sometimes itch or burn there for no reason. The pain during sex can be excruciating. It causes my muscles to spasm, which actually hurts him...It feels raw, like the skin is splitting open. When I described it to my doctor I described it as a a paper cut in the skin between my forefinger and thumb being pulled apart while vinegar was being poured over the wound. I ended up seeing four different OB/GYN's before one told me no it wasn't all in my head, and the whole diagnosis process took almost five years....I didn't need more lube, I didn't need to relax, I probably wasn't reliving a sexual trauma from childhood (yeah, one doctor tried to tell me that one)....

It actually went into remission last year when I began having seizures as a side effect of a medication I was taking and I had to start taking an anticonvulsant called Neurontin. I was taking about 3000mg a day and after a few months on the Neurontin, I discovered sex didn't hurt any more and within six months I didn't even need the lidocaine anymore. I came off the Neurontin about six months ago and that pain hasn't come back (and neither have the seizures). Turns out Neurontin is used off label to treat nerve pain.....interesting.

From my understanding vulvodynia is caused by a reaction of the nerves to irritation, which causes them to actually proliferate. Only they aren't the right kind of nerves....normally there are both A fibers, that respond to touch and C fibers, that respond to pain in the vulva. Chronic irritation, caused by yeast infections, bacterial infections, contact dermatitis from detergents, mechanical irritation or any allergic response can trigger the release of prostaglandins and histamines that affect the C fibers......eventually this constant triggering of the C fibers alters nerve centers in the spinal cord.....then the nerve centers mix up the signals from A fibers with those from C fibers....and the lightest touch becomes excruciatingly painful.

It's not something I want to experience again. I'm hoping this is a lasting effect of the Neurontin......

It might actually be vestibulodynia that I have. I know the gyno said something about the vestibule and then she was talking about vulvodynia. I was luckier than you I only had to change gyno's once to find out WTH it was. The first one kept saying that I was using the wrong soap and all that. lol She retired and actually recommended the one I have now though. So I guess I do owe her thanks for that. I'm on neurontin too but I'm not only on 400 mg. I've had people suggest to me to take more. I'll have to talk to my gyno about that.

I have a feeling a lot of females have this and are just in agony and don't know what the heck it is.

Wonderwoman, is that when you get cysts a lot? I actually thought that I might have problems with uterine cysts at one time because I was on the patch and when I would go off it to have my period I had horrible cramping and stuff. It turns out the patch was just no good for me. lol I'll have to look that up.

I've had vulvodynia for 12 years and know what you're going through. I've started a community to share resources related to vulvodynia - check it out at www dot curetogether dot com
Hope that helps and good luck
Alexandra

My OB/GYN didn't put me on the Neurontin. He did suggest Elivil, but it's an antidepressant and I can't take antidepressants because I'm bipolar. The lidocaine worked when I needed it too usually, only sex was only possible about every three days, and I'd have a horrible buring feeling afterward as it was wearing off.

It was kind of by chance that I ended up taking Neurontin. It was actually prescribed by a neurologist for seizures. I was on a dose that high because of the seizures... It was actually a side effect that it helped with the vestibulodynia. So far it hasn't come back. I can have a little pain every now and then, but it's nothing like it used to be. If it does come back I can always go back on the Neurontin.

Oh I see, I think you said that in your post earlier (about why you were on the Neurontin) but I wasn't reading close enough. Sorry about that. Sometimes I just skim through things and miss important points. That's something that I'm working on.

Yeah there is this one message board for people with vulvodynia that I was posting on and a lot of women use Neurontin for that. It might have worked better for you if you hadn't have been on such a high dose, or if he gave you something else with it. I'm on meds for anxiety and stuff so I know how it is. It's funny because my gyno called my shrink and told her that she was putting me on Neurontin and my shrink said, oh this might actually help you with your anxiety too. lol So my experience with it was kind of the opposite. But yeah different doses work for different people. It might not actually be that good for me to go on that high of a dose because I am very sensitive to medication and side effects, but you never know until you try.


accarmichael, I will definitely check that out.

I wasn't too keen on taking that high of a dose, but I can say it was way better then taking 600mg of Seroquel a day (that's what gave me the seizures). That dose of Neurontin was required to stop the seizures. I was pretty happy to come off the Seroquel.....the side effects of the Neurontin weren't too bad, only I think it made me a little more absent minded than I already am...

I eventually came off it just because I didn't feel like taking medication anymore. I tapered my dose down, and finally came off it....I haven't had a seizure since, and the vulvodynia hasn't come back so far. I'd say it worked pretty well. If it does I could go back on it, but at a much lower dose.

WOW!

yes! i have never ever known someone else who had this! could it be related to AS?

ok- making it short-

i have/had vestibulitis... i had surgery to remove the bottom portion of my inner vulva. to the untrained eye- i look completely normal down there. what i mean is that the surgery did NOTHING to change how my va-jay-jay looks... only removed the nerves and some of the minor glands down there.

anyway, i HIGHLY recommend the surgery. it wasn't as bad as i thought. 6 weeks later i was healed and had REAL sex with my husband of 4 years for the first time. now were like rabbits... without the annoying little litter every few weeks.



anyway, if you have anything to add or ask me, let me know.


oh, and yes, i did try medication and other things first. surgery was the only real option for me that was lasting. and YES- i have no problems now. i do sometimes find that near that time of the month i'm more 'sensitive' and well... can do as much as i would like so to speak... but any other time its like the olympics.

I'm seriously thinking of doing this because I really can't take it anymore. I don't need a constant reminder that I was raped and I feel like I'm being punished.

Was that operation covered by insurance and how painful was the heeling process? I mean could you go back to work afterward?

You can pm me about it if you don't feel comfortable talking on here.

my name on here is my gmail account- if you want to email me.

also-

yes- completely covered by INS. out patient procedure. it wasn't pleasant, but i imagine i could have gone back to work in a few days... maybe if i did it on a friday back on wed? or done on a wednesday back on a monday? in other words, not BAD, but i wouldn't have been able to go back the next couple of days.

i'm sorry to hear what you went through. as for being punished- i hope you know that you aren't. i often wondered if it was that way for me (i wasn't raped, but don't we all assume our situations are 'our' fault?

i'm completely comfortable talking about it- i realised a long time ago that if someone had talked to me about it sooner- maybe i wouldn't have suffered like i did.



i hope that helped, ask me if you need to know more.

i can say this- once it was done- it was DONE.