Support Group Meeting

A long time ago I was channel surfing and noticed a show called Strange Sex, out of curiosity, I watched the episode that was on and was intrigued. It was about a woman who had vulvar pain. After watching the show, I typed her name in Facebook to see if I could contact her and she was there! Long story short, I wrote her an email and crossed my fingers that she would be open to talking to me. She was very sweet, supportive and told me about a support group in Washington that had women who had vulvar pain and diseases. I did some research, contacted the lady in charge (Gerry) and joined!

I went to my first meeting on Saturday. The group leader lives about twenty minutes out of Seattle, so I drove early in the morning for three hours, attended the meeting and drove straight back. I was exhausted from all that driving and my rear end was extremely sore from all that sitting (I have a huge fissure there). When I got home Matt had tucked and re-tacked the carpet, put up more baseboard in the front living room and bought me a huge bouquet of flowers at Costco. The first thing I did when I got home was crawl in bed, pull the covers over my head and take a quick 20 minute nap before joining the family. It was much needed.

Matt took the day off work so I could go-it was an important meeting because a leading doctor in vulvar pain was speaking and I really wanted to meet some of the ladies, especially Gerry the group leader. She has been so supportive, done research for me and given me more support than any friend I've ever had (in relation to my LS). She suffers herself from MS and vulvar pain and I can relate on some levels to her life. I did not have a whole lot of time to visit with her, but hope to in the future. She is an inspiration.

Here are some tid bits I learned at the meeting that you all may be interested to know:

• The chances of a woman having vulvar pain (not LS-what I have) at some point in her life is 15-20%.
• Pelvic Floor Muscle Therapy (good for women with IBS)
• 25% of women with Vulvodynia (again not LS) noted onset of pain after giving birth
• Oral contraceptives can cause a decrease in estrogen effect and contribute to increase nerve growth and pain (which can increase Vulvodynia (not LS) pain
• Douching upsets the normal flora in the vagina making you more likely to get an infection
• Use mild soap-Dove, Neutrogena, Castile soap, skip bubble baths and pat dry
• Use vegetable or olive oil for lubricants, not KY Jelly because it contains chlorohexidine

Cathy Brinton, ND 2011


The meeting was informative for Vulvodynia patients, but I found little of it relevant or useful for my disease. It was refreshing to meet and visit with other ladies that have vulvar pain and I got the name (my third so far) of another great doctor in Portland-Dr. Tori Hudson. Have you heard of or seen her?

If you suffer from ANY kind of vulvar pain here are two books you might want to check out:

• When Sex Hurts: A Woman's Guide to Banishing Sexual Pain
• Heal Pelvic Pain by Stein

Also, if you want to keep yeast infections at bay, you can take this over-the-counter medication called Kolorex. It's an advanced candida care supplement (775mg each).

I'm not sure if I will go to the next support group in May. Like I stated before, all the ladies suffered from Vulvodynia not LS. However, if I do go again, I think I will get a hotel and maybe invite a friend and make a little trip out of it :) One thing is certain, I need my immune system and thyroid antibodies tested. I will be calling all three of the doctors that people have told me about to see which one is best equipped to deal with LS and go from there. ~S