Welcome to the first installment of "Late Night Q + A." Over the past decade, it was so hard for me to find help. I often found myself googling late at night, anxiously trying to find answers. Sound familiar? If that describes you, read on. Then go back to sleep!
Is it all in my head?
Nope, nope, nopity nope. Check out this Canadian PSA on vulvodynia (defined as "persistent vulvar pain with no known cause.")
Am I the only woman with vulvar pain?
One study found that 8-28% of women experience persistent vulvar pain lasting longer than three months over the course of their lifetime. Another study put that number at more than 25% of women. That means you are probably more likely to develop vulvar pain than get breast cancer, which has a lifetime risk of 12%. Or asthma, at 8%. Even heart disease, so well known in our culture, affects considerably fewer people than vulvar pain at 11% of the population.
If vulvar pain is so common, why is it so hard to get a diagnosis?
Good question. According to the book Healing Painful Sex: A Woman's Guide to Confronting, Diagnosing, and Treating Sexual Pain by Deborah Coady MD and Nancy Fish MSW, MPH - which I highly recommend - "There's no focus on sexual pain in medical education, no residency rotations, no fellowships." (p.38) That means doctors have to go out of their way to study vulvar pain; and frankly, why would they? Obstetricians are focused on pregnancies and childbirth, and gynecologists can specialize in any number of fields: surgery, hormonal problems, cancer, infertility. There are plenty of established options without having to go out on their own to study vulvar pain.
Of course...if we as patients speak up and demand better care, then one day there will be a focus on vulvar pain in medical school, and getting help will be easier for our daughters and granddaughters.
Will I ever get better?
Yup, yup, yupity yup. It may take a long while, and you may have to go through a lot of crapola to get there, but it is possible to get better. Again, from Healing Painful Sex: "Sexual pain is almost always caused by an identifiable, verifiable medical condition; it can be treated; and it is not in your head." (p.2) Phew! Thanks Deborah and Nancy!
Will I ever be able to date/marry/have kids/ have a career...etc?
Yes! See above. You can get better.
During my worst flare-ups, I always felt like my life was ending, that I would be curled up on the couch forever, and that all of my dreams would remain just that. But over the last decade, my decade of vulvodynia, I also managed to graduate college with honors and Phi Beta Kappa, get married, create a great sex life with my wonderful partner, backpack through Southeast Asia, travel to Brazil seven times, move to a place I absolutely love, buy a fixer-upper, fix said fixer-upper, become an aunt...the list goes on.
Did everything happen when I wanted it to? No. Am I where I want to be 100%? Not yet. Have I had to spend A LOT of time taking it slow and taking care of myself? Yes. But my vulvar pain has not stopped me from living a full, brave, adventurous life, and it doesn't have to stop you either. The choice is yours.
So how do I find help?
Start by purchasing Healing Painful Sex, available wherever you buy books. I wish this book had been out when I first started having pain, but even though it wasn't published until 2011 I still found it immensely helpful and deeply validating. The ISBN number is 978-1-58005-363-1.
In addition to providing a thorough run-down of the many different types of pelvic pain and how to figure out which category you fall into, the book has tips on how to navigate a medical world in which many doctors are ignorant and a social world in which the topic of sexual pain is taboo.
While you are waiting for the book to arrive, you can hop on over to the Resources page. Of special interest to the vulvar pain patient is the National Vulvodynia Association, and the Physical Therapist Locator on the Section on Women's Health site.
Lastly, if you can go to one of Leslie Howard's pelvic floor workshops, I highly recommend it. Even if you are not a yogini (Leslie is a yoga teacher), you will learn a ton. I learned more about my anatomy from her than I have from all of my doctors combined. Bonus: you will be in a room chock-a-block full of women with pelvic pain, which will do wonders for your self-esteem.
Is it time for me to go to bed?
Yes. This is enough for you to get you started. Sweet dreams, little ducky!