What's Helped My Vulva
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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Contact the National Vulvodynia Association at www.nva.org . They will have a list of physician's that you can see in your area for help. It isn't just about diet and supplements. It is often a structural issue and physical therapy is necessary. Good luck and never give up.
I wish they would allow us to edit these posts.
I did have physical therapy, for a good year. Saw a P.T. in Mill Valley who specializes in pelvic floor muscle rehabilitation. It did help. I don't have all the equipment to do the at-home biofeedback yet, but should be getting it soon. However, getting the structural issues addressed still didn't prevent sudden flare-ups from eating the wrong foods, and that's why I think the diet is a very important part of the treatment, for me. It may be different with other women as they might not be as sensitive or reactive to various foods (and allergies can vary).
I'd contacted the NVA years ago, but not recently. There were no doctors in my immediate area so I've always had to drive at least an hour away to get any decent help for this. It would be interesting to find out if there are any now ....
Thanks for your comment. :)
Flashcat-
You should be able to edit your posts. There is an edit option at the top of posts that you start, and an edit button at the bottom of posts that you add.
Please give us a nod if you need more help with editing your posts and we'll be happy to help you!
I don't see an edit on the posts. I do see that for the comments, though. (Thanks. :))