VPAQ Reminder - Due March 1st!

Hey everyone! I wrote about this back in January but here is your timely reminder in case you missed it:

The VPAQ questionnaires are due next Monday March 1st! So hop on over and get yours done!

What is the VPAQ? The Vulvar Pain Assessment Questionnaire, conducted by Queen's University in Ontario. They are trying to get more information about vulvar pain, from the perspective of patients.

It's a lot of multiple choice questions, but you also get to respond to open-ended queries such as "What has seeking medical attention been like for you?"

It was sweet, sweet pleasure answering that one...I could finally unload all of the miserable details of the past ten years in a productive way.

So curl up with your computer and help others help you!

 

PS If you found me over the weekend thanks to my winning B-School video, WELCOME! I am so glad that you are here. As you may have guessed given the B-School application, I've got a lot going on in the background to grow this little website in the coming months. 

Contact me, even if it is just to say hi. It's fun to when a new subscriber becomes more than an email address and I get to hear a bit about you.

PPS As of this morning that little YouTube video had over 920 hits. Maybe by the time you receive this it will have reached 1,000? 

i won I Won I WON!

Remember that Marie Forleo B-School scholarship contest I told you about, the one for big-hearted peeps who want to make the world a better place and need to learn online marketing skills to do it?

HOLY COW I WON.

A very big THANK YOU to everyone who watched and passed along my video!

I was one of 54 scholarship winners selected out of 1,500 applications. (Thats a 3.6% acceptance rate, more competitive than Harvard's 6.9%. I know it's different, but it still makes me feel special...)

I am SOOOOOOOOOOOOOO excited, and thrilled that someone with Marie Forleo's clout and visibility was willing to back our little YatraYoni.com. Never heard of Ms. Marie? Here are some highlights from her bio:

  • Named by Oprah as a thought leader for the next generation
  • Head of one of Inc’s 500 fastest growing companies of 2014
  • Reaches over 275,000 readers in 193 countries worldwide
  • Featured in Entrepreneur Magazine, Fast Company, Glamour Magazine, Self Magazine, Forbes.com and The New York Times
  • Has mentored business owners at Sir Richard Branson’s Centre of Entrepreneurship

Pretty awesome that from an 89 second video she thought I was worth $2000 of free education. 

I'm excited I got the attention of Marie and her team, I am excited to work with and alongside the other ambitious dreamers of the 2015 B-School class, but mostly I am thrilled to learn this get-your-message-out-there thing and knock it outta the park!

To happy vaginas everywhere! CHEERS!

 

Evidence-based Medicine Part 1: What the heck is this and why should I care?

"Evidence-based medicine" (EBM) is exactly what it sounds like: healthcare based on rigorous scientific evidence.

Call me crazy, but isn't that what we get any time we go to the doctor?

Turns out, no. The reality of clinical practice is more complicated than that, not everyone is on board with this concept, and due to the dearth of research on V pain, knowing about the pros and cons of EBM is very, very relevant to you.

* * *

Part One of this blog post discusses the general background controversy of EBM, and some examples of how that is playing out in the pelvic pain world.

In Part Two I'll bring up a big ol' red flag that is not being discussed in the EBM controversy.

In Part Three I'll break this mess down and discuss what it all means for you and the health of your lady parts.

Ready, set, go!

* * *

Here's a little background on the controversy...

Supporters say that EBM improves care by reducing the use of unproven treatments, variations in clinical practice, and the failure to follow consistent guidelines; i.e., it corrects the problem of doctors doing way too many different things for patients facing the same issue, including the use of treatments that may have no evidence to back them. Don't patients deserve to get the best treatment available and not be yanked around on wild-goose chases of potential quackery?

Opponents say that doctors need to respect patient preferences, that just because something works statistically doesn't mean it will work for a particular individual, that insurers will use EBM to deny patients care because there isn't enough evidence to support it, and - this is where it matters most for you - for little researched conditions like V pain, there often isn't any evidence anyway.

Also and ironically, as of the writing of this admittedly old article (2004), there isn't any evidence that evidence-based medicine works. (I tried to find more recent studies investigating this question, but was unable to. Doesn't mean they aren't out there. A lot of scientific evidence isn't available to the public as it is published in super expensive journals which are only found in libraries with restricted access - i.e., university libraries that are only open to students.)

If you want more information on the brou-ha-ha surrounding EBM, you can find various articles here, here, here, and here. The Center for Evidence-Based Medicine can be found here.

* * *

How is this playing out in the world of V pain?

At the International Pelvic Pain Society's annual fall meeting this past October, the keynote speaker implored the audience to launch and participate in studies on pelvic pain. He said it was the responsibility of all health care professionals to do so; failure to participate was failing one's patients. For the record, the speaker was Dr. Khalid Khan, the editor-in-chief of the British Journal of Obstetrics and Gynecology. (You can like BJOG on Facebook and follow them on Twitter.)

At the same event, Dr Christopher Payne at VistaUrology said "Evidence-based medicine is holding us back." (Thanks to Sara Sauder, DPT, for taking good notes and actually having that quote.)

On the surface it looks like these two doctors are on opposing sides, but they aren't. Dr Payne's point was that patients can't wait for trials and studies to be done; they need care now. Dr Khan was frustrated at the slow pace these studies were coming out.

In this blog post, you can read Sara Sauder's take on the problem of producing and relying on EBM, and on Dr Jen Gunter's blog you can get a perspective from someone who is whole-hog pro-EBM to the exclusion of everything else.

* * *

My two cents as a V pain patient is that EBM is not the gold standard.  

As a patient, I'd rather try something untested than not try something at all. I'm bummed Sara doesn't contribute to research when it's exactly her knowledge and experience we need. I appreciate Dr Gunter's generous sharing of her knowledge - a lot of us don't know how to interpret studies and are misled by the media as to what they mean - but at the same time in at least one post through flippant generalization she wrote off a treatment that I and, anecdotally, many other women have benefited from.  The tagline for her blog is "I wield the lasso of truth," but I don't buy it. A more accurate, but less catchy, tagline would be "I provide education on how to interpret scientific evidence, and point out inconsistencies and misinterpretations of said evidence in the media." But "truth?" Eh.

* * *

So that's the very brief overview of EBM in general and in the world of V pain. But wait, there was something missing here...

Who decides what gets studied?

We'll be looking at that can of worms in Part 2. Stay tuned.

 

PS Remember to tweet and FB post about my scholarship application!

 

Help me End V Pain with a Tweet and a Post!

We all want effective treatments for V pain, right? In order for that to happen, we of course need to build public awareness. Without public awareness, there will be no demand for treatment, and without demand, there will be no supply!

Therefore in order for hurting vaginas to become happy vaginas, we need to create an effective communication, i.e. marketing, campaign. Which is exactly what I am going to do. 

I've entered a scholarship contest for Marie Forleo's B-School program, a course about non-sleazy, totally awesome online marketing for big-hearted people who want to change the world.

It will increase my chances of winning if my 90 second video is tweeted like crazy and posted on Facebook a gajillion times. Please help me out!

Note: If you don't want to "out" yourself, you can totally get around that by framing it as "I heard about this from a friend of a friend and thought it was cool, re-tweet this!" or "I know someone who is affected by this health issue so I'd love to spread the word! Re-post this!" (and the person you "know" can be me, not you, ya know?)

The contest goes from now to February 20th, so a Tweet and a post (or five) a day would be much appreciated. Put it on your calendar!

 

Guidelines 

Twitter

1.) Use the hashtag #winBschool and the link http://joinbschool.com (That's what the scholarship committee is looking for.) 

2.) Use the combo of #womenshealth and #painfulsex to maximize the chance of re-tweets. Even people who have never heard of V pain will get it, and women generally care about women's health.

Sample - (It's tough getting an effective message into 140 characters, so feel free to use this verbatim):

#WomensHealth=important! Build awareness re: #painfulsex. Watch http://bit.ly/1zIdRsQ and re-tweet! #winBschool http://joinbschool.com

 

Facebook

1.) Use the terms @marieforleo's B-School#winBschool, http://joinbschool.com (again, this is what the scholarship committee is looking for.)

2.) No one really "gets" terms like pelvic pain, pelvic health, or vulvodynia, so framing it in terms of women's health and painful sex makes it more likely that you will get people's attention. Include a "call to action:" an easy thing that people can do right away, like "watch the video," "like this!" or "please re-post." If you just say "Geez, this is depressing" or "Did you know about this?" the message won't get passed on.

Sample:

"Holy crap have you seen this video? I had no idea lady part pain was so common! Build awareness about #painfulsex by helping this bad-ass lady win a scholarship to @marieforleo's B-School. Re-post and tweet the video with the #winBschool and http://joinbschool.com link."

You can also re-post my posts ;) which can be found at facebook.com/yatrayoni and facebook.com/faithcornwall. (The first is public, the second private - feel free to friend me if you are not comfortable being publicly associated with the YatraYoni page.)

 



Happy Valentine's - I mean, Vagina's Day!

Tomorrow's Valentine's Day! And you know what that means - it's the most vulvovaginal day of the American year.

(If you know of a country or culture that has a more juicy V day than this, you know I need to hear about it.)

It's the time of hearts - believed to be a symbol descended from images of women with their legs spread wide, and using their fingers to pull the labia upward, turning the vulva into the heart shape we know and love today!

It's the time of year when stores and offices and homes are draped unabashedly in feminine red and pink, and rose sales skyrocket. It's the time for stupid articles about "What Women Really Want," hopeful yet unrealistic expectations, and many many bottles of wine drunken by hordes of both the depressed and proudly single.

But it ain't all about boxes of chocolate. It's probably the most popular time of year for productions of The Vagina Monologues. It's the high holiday for V-Day, the organization that fights violence against women and girls, the organization that birthed One Billion Rising. One Billion Rising puts on events in 200 countries in which women and men dance to protest the fact that one in three females will be raped or beaten in her lifetime.

And - with the notable exception of gay men - it is a time when millions of people have an extra excuse to relish the pleasure that the almighty V brings.

For better or for worse, Valentine's Day reflects the conflicted emotions, beliefs, and (mis)understanding that our nation has about women and their sexuality.

Yes, it's ostensibly about love between couples - but really, this one's about the ladies. Maybe that's because our national stereotype is that romance is inherently feminine.

And frankly, I'll take it. As a female I love to be associated with love, with romance, with pleasure. In fact, I want more of it. This planet could use a healthy dose of feel-good sumpin' sumpin' and I'm happy to supply it.

This vulva-shaped box of chocolate is for me? I thank you sincerely! I don't care how trite it is, I like vulvas and I like chocolate. Boom. A luscious bouquet of flowers in the middle of winter? Yes! That is perfect, as indeed my lady parts are springlike all year round.

I am happy to ignore the many ridiculous aspects of this day as I am too busy making it my own.

May you relish this Valentine's Day. May you celebrate the V however you damn well please: listening to symphonies, enjoying the company of your vibrator, dancing with the one billion, crying at romantic comedies, reading erotica, hugging a tree, getting swept off your feet by your favorite painting.

This is your day, and you and your vagina can do whatever the hell you want with it. 

Happy Valentine's Day, hot stuff!