Vulvodynia
 

I've had vulvodynia for several years now. It gets worse just before and during my period. On looking it up, apparently that's thought to be linked with candidiasis, but my gynae says not. More of a nerve problem, she thinks.

My gynae is lovely but seems to have run out of things to try. Gabapentin didn't seem to help, and did cause no end of trouble when I came off it. I don't get on with amitriptyline. Lidocaine merely stung, and other topical treatments weren't any help either.

I think I may have had some relief from going on combi antihistamines last summer, although it's hard to tell as I also became single at the same time.

At the moment I'm messing around with herbal oils applied topically. I started off with calendula oil, which is meant to be generally soothing for skin and also antifungal (just in case), and am now adding St John's Wort oil, which is meant to be good for nerve pain. I've checked with a herbalist, and the amount I'm using isn't enough for the St John's Wort to start acting systemically and interfering with medication. I apply that twice a day, and also apply aloe vera gel occasionally through the day. I haven't found anyone using St John's Wort as an oil for this purpose, but I've heard of a few people getting relief from hypercal cream/ointment, and that's the same herbs.

This period, there's practically no pain, so something seems to be working. I don't know if it's the oils, as I also increased my multimineral supplement and started taking the 25,000iu beta carotene supplement every day, instead of once a week as before. If you look up beta carotene and vulvodynia, there's one doctor reporting success with it at higher doses, 75,000iu to 150,000iu. I'm thinking of giving that a try, depending on how this works out. I've had occasional good periods for no reason, so I'm not going to assume I'm cured yet, especially since it's not being put to the real test of having sex.

Has anyone used any of these things for vulvodynia, and if so, what did you find?

Hi Batik

I suffered from what I considered vulvodynia for the first 30 years of my life, including childhood. I would have about 4 pain free days per month. Many doctors and gynecologists said, don't know what it is and its not that bad. So I put up with the pain.

My sister found an article that described me perfectly. It talked about trying the Low Oxalate Diet. My life has been literally pain free since then, I stay away from the high oxalate foods and it works well for me.

Just google Low Oxalate foods, and there are quite a few links.
Hope this helps, I really do, I know how debilitating this pain is.

I've heard very mixed reports of the low oxalate diet, though I suppose it's worth a try. I'm vegan, though, so I'm not even sure if it would be possible for me.

Further update: it's recently been suggested to me that I should get checked out for Sjogren's Syndrome. I had a chat with the SS helpline, and it does indeed match me suspiciously well, but I'm having so much trouble getting the dysautonomia diagnosed right now that I think I'll have to shelve investigating it for the time being. Meanwhile, it's food for thought. I'm considering raising the dose of my Omega 3 oils, and wondering if the vulvodynia is indeed connected to my dry eyes (and mouth. And nose. And my skin's none too happy either). If it were SS, would that lead me anywhere in terms of treatment for the vulvodynia?

Hi Batik,

I'd say you're on the right track with the oils etc. I've had this as well.. along with a host of other autoimmune type things like endometriosis and interstitial cystitis, chronic fatigue syndrome and some kind of weakness I haven't figure out yet..:confused: I think your gyn may be mistaken about the candida, I think it is commonly a factor in this kind of thing, and I'd load up on probiotics and cut out sugars and starches as much as possible fora while to see if it can help.

The vulvodynia is definitely a bummer.. it' been a problem for me to varying degrees since I was a young girl and had had a fall. Things I've noticed that make a difference:

~**a bit graphic here, but hopefully not TMI...** Having a compatible, gentle lover.. perhaps uncircumcised, or at least willing to be gentle for you, willing to increase his own sensitivity.. it seems there is less friction stimulation necessary with men who are uncircumcised. Circumsized men seem to have less sensitivity in lovemaking, I'm guessing because of the exposed glans, and in my experience they want a lot more friction and force. Lots of lube is also very important. Get a good organic one with no carcinogens, sugars, or weird chemical flavourings. Organic coconut oil, or olive oil are great, but stain the sheets :/ There is one I've found called Blossom Organics that seems pretty good but I'd make sure you cleanse it off with a damp cloth afterwards because I've notice an irritation reaction to it if I forget and just go to sleep after love.

~Keeping stress down, meditation, etc, relaxation is so important. There is also a particular form of meditation happening in some larger urban centres called Orgasmic Meditation, or "OM" that you might consider checking out, if you're open to it.. it's kind of "out there" in terms of many people's comfort zones, but worth some thought in my book. The founder of this method, Nicole Daedon, has written a book about it called "Slow Sex" that might also be an informative read. She also has a TEDtalk out there too.

Pleasure is very healing for these tissues, and it is neurological (as well as psychological and emotional!) retraining as well, to orient to pleasure rather than all that stuff (physical as well as emotional) that comes up when one anticipates pain with what is supposed to be pleasurable. We release oxytocin when experiencing pleasure, orgasming or feeling close, so the more of this you can get flowing, the more healing I suspect can happen. So this is why a compatible, gentle and caring partner is so important.. try and choose a guy who is also sensitive for a lover.. but there is a lot you can do on your own too for yourself here.

I wish you loads of luck.. feel free to PM me too!

:) T

hi batik,

I was diagnosed with vulvodynia at first, now I just call it nerve pain.
it sounds like you have a skin problem, or a small fibre neuropathy,
have you tried long term probiotics?
if gabapentin didn't work for you, it's not purely a nerve problem....
physical therapy works wonders. Uk has some good ones, especially at the royal free hosp in london.

sometimes the pelvic floor goes into spasms and this can create nerve pain because the tissues are not getting the oxygen they need.

Have you seen Wendy Reid? she is the best from what I gather

anyway, you are lucky. I have pure nerve pain down there and I can barely wash it and wipe