Okay, so, I've had this condition chronically since 1987. Seen a lot of doctors, including so-called specialists. Tried a lot of treatments. I steered clear of surgery. Topical mycolog cream helped for awhile but eventually, over time, it actually made things worse. Dietary changes have been huge in treating this pain. However, it's also been quite a rat's nest of confusing food lists and reactions in attempting to really pin down what's irritating food-wise and other culprits. A relatively low-oxalate diet, as supported by the Vulvar Pain Foundation, has helped to a degree. Daily calcium citrate supplements didn't do much for me. In fact, I actually felt better once I STOPPED taking them. Treating intestinal candida with a very difficult and strict anti-candida diet coupled with daily and then weekly Diflucan helped a great deal. However, I was also receiving specialized pelvic physical therapy treatments at the same time. Both of those regimens improved my pain about 80% within a year.
More recently, I am being treated for allergies with sublingual desensitizing drops. (I know; it hasn't been given the FDA seal of approval yet.) I tested out with several allergies, some more potent than others, including a few allergies to my body's own hormones (progesterone, luteinizing hormone and more recently, estradiol). I really do feel that the allergy treatment is helping, but it's a little too soon to tell yet, and the treatment is very tricky.
Two years ago I was tested for Lyme disease through a specialty lab that concentrates specifically on testing for that infection. The result was positive. I was ambivalent but decided to try the antibiotics regimen although I feared it would flare up candida yeast. I took an antifungal at the same time. I did not experience flare-ups unless my I strayed from the helpful diet. I took the antibiotics for a little over a year. I really am not clear as to whether this had any positive impact on the vulvodynia.
I have tried both skin-patch and topical estrogen in the past; however, the failure of this treatment for me was most likely due to the estradiol allergy and I will have to wait a long time to try it again.
What can usually make me feel worse are very hot (especially humid) weather, probably because of the sweating. Sweating during heat OR exercise can be very irritating. Stress also appears to make pain worse IF it's already bothering me somewhat. I'm not sure but it has seemed like exposure to certain environmental chemicals have been guilty of helping cause painful flare-ups. And any sort of vaginal infection is capable of worsening the pain without fail, as is wearing tight clothing or fabrics that do not breathe well (in the stride area).
Supplements have come and gone. I took B-complex for the B6 but ended up with too high a blood test result so had to cut back. Magnesium supplements seem to afford a little improvement. Herbal treatments usually caused flare-ups; I steer clear of herbs these days. Relaxation therapy as put forth by Dr. Herbert Benson definitely helps reduce pain levels if I'm stressed out.
These are all I've tried thusfar (but doesn't it sound like enough?).
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