Resource Spotlight: Patty Brisben Foundation

During some recent internet wanderings, I came across the Patty Brisben Foundation for Women's Sexual Health. An organization dedicated to improving the sexual lives of women? Sweet. I popped the link onto my Resources page. But I continued to be curious - who was Patty Brisben? Why had I never heard of this organization? - and a few weeks later, when I stumbled across the Twitter handle @PattyBrisben, I decided to poke around a little bit more and get some answers.

The Patty Brisben Foundation was founded by - you guessed it - Patty Brisben, who also founded the Pure Romance adult toy company over 20 years ago, which sells its products to women through in-home parties and online. The Foundation grew out of a desire to give back, and focuses on four underserved areas in clinical research:

• Vulvovaginal Pain Disorders
• Sexual Health Issues during Peri-Menopause and Menopause
• Intimacy Related Issues after Cancer Treatment
• Libido and Desire

I think it's AMAZEBALLS that this organization is dedicated to overlooked issues that affect so many women. For instance, menopause. Kinda common right? And yet very little attention is paid to the sex lives of older women. And I LOVE LOVE LOVE that the PBF is paying attention to women with chronic illness and cancer. So cool.

One of the awesomest features of the PBF website is that you can email their medical professionals with questions about sexual health. Often the information that foundations are collecting and funding can seem out of reach to the general population, so this is a great way to make their knowledge accessible to women around the world.

Three cheers for the Patty Brisben Foundation! Donate to their worthy cause here.

Mind-Body Medicine

Today's post is about what mind-body medicine is and how it can reduce pelvic pain. Click above to watch it!

International Society for the Study of Vulvovaginal Disease

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This past weekend, Chicago was the site of the 22nd Biennial Conference on Diseases of the Vulva and Vagina, hosted by the International Society for the Study of Vulvovaginal Disorders (ISSVD.) The mission and founding document of the society shed light on why so many vulvar and vaginal patients may be frustrated with lack of quality care. (The bold text below is my own emphasis.)

The mission of the ISSVD is

To promote international communication among gynecologists, pathologists, dermatologists, and related disciplines, and to establish international agreement on terminology and definitions of vulvovaginal diseases.

To promote clinical investigation, basic research, and dissemination of knowledge in this field.

The organization was founded in 1970 at the Federation of International Gynecologists and Obstetricians, with the first meeting being held in 1971 in San Francisco. At this first meeting, the founding fellows signed a resolution as to the reason for their existence:

WHEREAS, diseases affecting the human vulva are not confined to the limitations of a single medical specialty, nor to the borders of a single nation, and

WHEREAS, there apparently exists no generally agreed upon terminology regarding classification of vulvar disease, and

WHEREAS, the free and efficient communication of facts and ideas is necessary, if we are to apply the ever-advancing wave of medical knowledge to the field of vulvar disease,

WE, the undersigned, do hereby resolve that there is justification for an international society devoted to the subject of vulvar disease and do hereby constitute THE INTERNATIONAL SOCIETY FOR THE STUDY OF VULVAR DISEASE.”

So...Western medicine dates back hundreds of years, yet a group dedicated to the study of the vulva - the avenue through which most of the world's population is born into the world - didn't start until 1970?! That's less than 50 years ago. Since part of the organization's mission is to agree on terminology, that means we are still finding the words to describe what is going on in women's bodies.

Is it any wonder that there is not sufficient knowledge to keep women's bodies healthy?

Today, the ISSVD only numbers about 300 people. That's 300 people, sprinkled in and amongst the 7 billion people on this planet. That's 300 vulvovaginal specialists for 3.5 BILLION women.

No wonder our lady parts don't get the care they deserve.

While I am saddened that attention to women's care is so behind, I am grateful to the pioneering doctors who are members and I am hopeful that their research will bring much-needed relief to so many women.

The ISSVD has kindly offered me a summary of this past weekend's proceedings, which I will excitedly report back to you when I get it!

PS Isn't the ISSVD's vulva-esque logo rockin' ? More on it's symbolism (besides the obvious) here.

PPS The founding members of the ISSVD were all men; not surprising, given how few women were doctors back in 1970. But still...cray-cray. Thank goodness that while in 1970 women made up 9% of medical school graduates, today that number is 48%. Hopefully this will translate into better care for women over time!

Late Night Q + A: Vulvar Pain

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?

Heck no! 

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!

What exactly is pelvic pain anyway?

You may be wondering what exactly pelvic pain is, or whether you have found the right website to serve your needs.

The pelvis is the basin shaped bony structure at the bottom end of our spines. It houses our reproductive organs, bladder, and parts of our digestive tract. Pelvic pain is pain anywhere in this region. Women may have pain here due to any number of reasons: cyclical pain (cramps), fibroids, endometriosis, vulvodynia, bladder pain or bowel pain. The cause can be dermatological, musculo-skeletal, hormonal, or due to the central or peripheral nervous system.

The reason this blog covers pelvic pain in general, as opposed to only vulvodynia (my specific diagnosis), is because many women don't know the specifics of their anatomy or the appropriate diagnostic names and therefore may not know to what to attribute their pain. In addition, many women have more than one pelvic pain problem, such as both genital and bladder pain. To make things more confusing, female pelvic pain is not well understood, so many doctors are not very helpful at guiding women to a correct diagnosis and effective treatment plan. Due to all of these reasons, I will be writing and providing resources about all kinds of pelvic pain.

Whether you have a diagnosis or not, whether your pain is new or decades old, you are welcome here. We are all learning and teaching together.

Have a question? Ask in the comments!