I'm early in my journey through the huge number of supplements I've seen recommended for vulvodynia and interstitial cystitis. I'm adding them to my routine one by one so far so I can see their effects. My current and past lists are below, plus reviews.
At the bottom I've listed the other supplements I've read about that I might explore later. Most of those I've gathered from forums, like the one at ic-network.com (is there a vulvodynia forum ANYWHERE?), or on vulvodynia sites like vulvodynia.com.
Probiotics -- I started with these because I know my gut's not in fantastic shape. I take Acidophilus and Lactobaccillus. Alone, I haven't seen much effect from these, which I know is weird. The brands are reputable (one is Culturelle, can't remember the other), so it's probably not that the little germies in the pills are dead. Still, I don't eat yogurt so I might as well take them.
(Dosage: 1 Culturelle/Lactobaccillus capsule, 2-4 Acidophilus capsules a day)
UPDATE 2/23/2013: I've been taking Saccharomyces boulardii (a probiotic yeast, I use the Jarrow brand) and was taking Fem-dophilus (brand name, simply haven't bought more yet), and these combined have greatly helped my digestion. S. boulardii eats bad stuff in the gut, including bad yeast, and leaves the digestive tract after you stop taking it. I figure I should replace the bad stuff, so I take Femdophilus too, which has strains of bacteria that naturally populate the vagina. I think probiotics are all about finding what works for you. We all have different balances and imbalances in our digestive tract, so don't stop just because a popular strain or brand doesn't work for you. I tried Florastor, for example, which is a more expensive version of the Jarrow S. boulardii, and I didn't see a difference. Jarrow works fine for me.
Magnesium -- I've read good things about this one for fibromyalgia, interstitial cystitis, and vulvar pain. I didn't notice anything from adding it, but it's also supposed to be good for pooping, and I need help with that.
(Dosage: 250mg chelated magnesium twice a day with food)
UPDATE 2/23/2013: I don't take this regularly, but I still have it on my counter to take. I've started taking multivitamins (irregularly) and mine doesn't have a full day's worth of magnesium in it.
Fish oil -- anti-inflammatory. I think it has a subtle effect for me, but maybe not. Still taking it as it's good for you in general and it doesn't cause a flare.
(Dosage: 1200mg Omega-3 twice a day with food)
UPDATE 2/23/2013: I don't take this anymore, but I think it is a good one to take for general health, and it is super-cheap. I will add it back.
Colostrum -- good for intestinal health; supports your immune system. Just added it a few days ago and it's been the most interesting one so far. The first several times I took it, about 45 minutes in, I felt a cool shaft (ugh I hate that word) stretching down from about my belly button to my crotch. It was like I had applied a non-crotch-destroying Vicks Vaporub directly to my coochie. Woo! But now it seems it might be making me flare. I've read that sometimes it sets off a flare for a while that then subsides, so I'm going to stick it out at least through this bottle.
(Dosage: 2 pills (1920mg) on an empty stomach twice a day; Brand: Symbiotics)
UPDATE 2/23/2013: I stopped taking this a while ago, probably when a bottle ran out. I still think it might've been beneficial. Worth a try.
Calcium citrate -- for binding to oxalates in food; the oxalate theory of vulvodynia. I've written about this before -- the low-oxalate thing never worked for me. Never saw an effect from this so I don't take it anymore.
(Dosage: 600mg with every meal)
Glucosamine -- good for cartilage; some theorize it helps with all pain. Didn't see an effect, stopped taking it.
(Dosage: 1000mg 1-2 times a day with food)
MSM -- again, promoted for pain, but I didn't see an effect so I stopped taking it.
(Dosage: I can't find the bottle! Whatever it says on the bottle)
Grapefruit seed extract -- helps balance intestinal flora by killing off yeasties. Omigod this one is a mistake for me. First day I took it on an empty stomach -- stomach burn. Then several hours later, lower abdomen burn, right above where I figure my internal female goods are. Then bladder burn on the outer face of it, like right under my skin (a familiar burn -- acidic foods). So the next day I took it with food. Didn't get the stomach or bladder burn, but did get the same intestinal burn. Stopped taking it, but it furthers my suspicion that my intestines are completely corroded down there.
The Rest of the List
Please remember to research supplements yourself and choose wisely (especially the ones that affect hormones -- avoid if pregnant!). There's no set way for someone to react to a supplement -- for instance, some people report flares from marshmallow root, listed below as soothing.
Also, please know that while I try to keep my facts straight, I'm not an encyclopedia. I've just done way too much surfing and taken a lot of notes.
Chondroitin -- often coupled with glucosamine to treat pain; many with IC say this causes a flare
Quercetin -- marketed as immune support; many with IC say this addresses their pain
Marshmallow root -- soothing
Baking soda -- IC sufferers might stir a teaspoon into water to quell a flare quickly UPDATE 2/23/2013: This has worked inconsistently to quell my vulvar pain.
Guaifenesin -- sold as an expectorant; cited by Dr. Glazer on vulvodynia.com as another doctor's "cure" for vulvodynia UPDATE 2/23/2013: I have taken this while sick (the brand Mucinex, for example) and haven't seen an improvement from it, but it may be worth another try.
Grape seed extract -- antioxidant
L-Arganine -- amino acid
Fish Max Ultra (product name) -- fish oil
Min-Inflamm (product name) -- marketed for general inflammation but some IC sufferers say it helps
Turmeric -- yes, the spice
Corn silk -- also a diuretic
Flax seed oil -- same idea as fish oil, but some say we don't absorb it as well
Vitamins A & E -- general anti-inflammatory or anti-itching
Dong quai -- general maintenance of reproductive system
Licorice root -- balances estrogen levels
Dandelion root -- cleanses liver which (supposedly) helps balance hormones UPDATE 2/23/2013: I can't speak to its hormonal effects, but it makes a strong but delicious tea!
Black cohosh -- menstrual aid
Motherwort -- menstrual aid, antibacterial
Intestimax (product name) -- supports health of small intestine's lining
Permeability Complex I or II (product name) -- support intestinal flora & mucosal lining
FloraMax (product name) -- probiotic
VSL#3 (product name) -- super-heavy-duty probiotic UPDATE 2/23/2013: I trield VSL #3 and it gave me a serious increase in my vulvar pain. It was very strange and I have no idea why it caused me such pain. I was taking a low dose recommended for IBS. Use with caution!
Prelief (product name) -- neutralizes acid in food
Garlic -- antimicrobial
Cranactin (product name) -- concentrated cranberry; cranberry can cause horrible flares for IC sufferers, but some feel this helps more than hurts
SuperGreens (product name) -- urine pH
Uva ursi -- antimicrobial
Pipsissawa -- antiseptic