(Editors Note: I'd like to take a moment and introduce my mother, Helen Osborne. A retired elementary school teacher, she literally saved my life during the early years of my IC. When I couldn't drive myself to the doctor, she drove. When I was crying in pain, she held my hand and took me to the emergency room. Her hugs, kind words and soothing voice kept me grounded. And, yes, she even started driving "freeways" again just to bring me home from an acute flare while we were. At the age of 74, she is also the energizer bunny of our family. She volunteers frequently at a local museum, nurtures my father Jack, and watches over her children and grandchildren like a hawk. She often talks with IC patients, especially when she's volunteering in our office. She has also traveled around the world to attend IC events, including London (UK), Vancouver, Orlando, Chicago and, this month Alexandria VA. As if the above wasn't enough, Mom has wanted to contribute to the ICN for some time as a correspondent for senior citizens. Her first brief article is on vulvodynia, a common condition that women with IC often experience. Characterized by burning, itching or pain on the vulva, it can be excruciating. Sitting can be painful. Sex impossible. Even wearing clothes can exacerbate pain during a vulvodynia flare. Mom is happy to share the many strategies that she has used ease her often severe symptoms of vulvodynia, including her success using the Low Oxalate Program of Dr. Clive Solomon's. Thank you Mom! You are truly an IC angel!)

"Living with Vulvodynia"

"The Low Oxalate Program Has Helped."

By Helen Osborne (Submitted September, 2003)

My vulvodynia symptoms first became apparent after I became post-menopausal, more than twenty years ago. My primary symptom was a burning sensation along the vulva that came and went in no rational pattern. It was difficult to sit or drive. When it was severe, I spent a great deal of time in sitting in the bathtub hoping that the water would soothe those tender tissues.

My experience with doctors is very similar to yours. Over a period of several years, I saw three male gynecologists who never quite understood my condition. They basically recommended that I wear white cotton underwear and use vaginal creams like Premarin, which helped marginally. Finally, I decided to see a female gynecologist. Seeing her was one of my better life decisions. She had many suggestions for me, some of which were helpful and others that weren't. You may recognize a few of these:

Perineal Wash Bottle - One of the most effective strategies I found was just using a "perineum wash." Every time I use the restroom I use a small wash bottle filled with room temperature water to rinse myself vulva & urethra off. I didn't realize that urine, or toilet tissue, could be irritating. Water is very soothing, cleansing and has helped keep my inflammation under control.

Baking Soda Baths - Baking soda in my bathwater seems to have a calming effect on my tender vulva. I take these baths five days out of seven.

Underwear - During a vulvodynia flare, even wearing underwear can be uncomfortable. I've invested in a supply of pretty cotton housecoats, dusters and flannel robes that I can wear around the house without underwear. Having more air circulation around the vulvar area seems to help.

Powdering with Cornstarch - A dermatologist recommended this to me but, after about six months, I decided that it wasn't helpful.

Laundry Detergents - My family has always been quite sensitive to laundry detergents. My husband will break out in a rash if I use a new laundry detergent and I've discovered that some detergents definitely bother my vulvodynia. I use a very mild laundry detergent, Ivory Snow, for my underwear and always rinse them twice to remove any soap residue. It definitely has helped reduce chemically induced irritation that I was getting when I used Cheer.

Vitamin E Daily - Vitamin E is an antioxidant and it is necessary for normal red blood cells, muscles and tissues. This is definitely part of my regimen.

Black Tea Compresses - These have been soothing and helpful during severe bouts of irritation.

Peanut Oil - One dermatologist suggested that I swab my vulva with pure, virgin peanut oil. He reported that this was used commonly as a preventative measure by women in Asia. I followed this suggestion for a year or so and then gradually discontinued its use.

Baby Wipes - Someone suggested that I try using Baby Wipes instead of Toilet tissue but I was too sensitive for the chemicals in the wipes. But, I do use Kleenex instead of regular toilet tissue when needed.

Yogurt Compresses - These were too messy for me and not particularly helpful!

Low Oxalate Program

Eventually, through the Vulvar Pain Foundation, I learned of Clive Solomon's research program for vulvar pain. He feels that calcium oxalates can be a strong contributing factor. To become part of his pain project, it is necessary to collect ten urine specimens over a 24 hour period to assay oxalate content. If your oxalate level is high, then they suggest avoiding the high oxalate foods like: coffee, beans, beets berries, chocolate, cranberries, cranberry juice, peanuts, peanut butter, spinach, etc.

The Pain Project also suggests taking calcium citrate daily, the dosage to be determined from the urine testing, as well as Ox-Absorb, which binds with oxalates in the intestine and is eliminated through the GI tract. I also use hydroxyzine, an antihistamine that helps reduce inflammation, and a compounded estrace cream (made without propylene gycol) on a daily basis. Since using the hydroxyzine & Ox-Absorb, I no longer experience vulvar burning. It has been a thankful four months of feeling "normal" once again.

For anyone in the throes of vulvar discomfort, don't give up! I would strongly suggest contacting:

The Vulvar Pain Foundation
PO Drawer 177
203 ½ North Main Street, Suite 203
Graham, NC 27253
Phone: 336-226-0704
Website: http://www.vulvarpainfoundation.org

Revised: 3/01/05 - kj