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.

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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!

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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.

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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.

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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.

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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!

Habits, Fears, & Pants

I hit another milestone during the IPPS Annual Fall Meeting.

About a year ago, two friends asked me why I always wore yoga pants. I was taken off-guard. It was not the time or the place to go into a lengthy medical history and explain that I wore them for pain management (ah! didn't want to go into that,) so I blubbered something about the fact that I am a yoga teacher, and that for two of the past three years I worked as a massage therapist, and that in that world yoga pants count as professional attire (justification, justification, justification.) Never mind that yoga teachers and massage therapists don't wear yoga pants all the time...

The truth is I didn't know how to answer my friends. I had slid into my daily yoga pant habit over time, and never thought about it. Their comment brought my attention to this routine, and inspired me to do some unwanted reflection. (Apparently you can think deeply about yoga pants. Who knew.)

I realized a few things. First, I thought no one had ever noticed me from the waist down. I don't present myself as a slob - I wear make-up, love earrings and pretty shirts. But below my belly button? I'd rather not think about it. Surely no one notices that on the rare occasions I need to wear something nicer than yoga pants, I just dress up yoga pants. A dress over leggings. A cool tunic over leggings. I fooled them all! (right?) 

As Stuart Smally would say, "Denial ain't just a river in Egypt."

Second, years of living with chronic pelvic pain had made my relationship with pants fraught. They reminded me that I was "broken," that I hurt, and that I didn't know what to do about it. I either wore pants a couple of sizes too big - which was sloppy, and I hated it - or sweatpants, also sloppy. While I love a good summertime maxi dress, I have never been a fan of skirts as I don't find them to be flattering. So by wearing yoga pants and leggings I avoided the unwanted skirts and took a step up from ill-fitting slacks and frumpy sweats. Ta da!

I felt and still feel pretty in yoga pants. They make me feel athletic, strong and confident. While in the early years they would've hurt a lot, as my symptoms reduced they became the only pants I could wear with almost no pain...and then, no pain. Regular dress pants were still uncomfortable, and jeans I could wear if I limited the time to only a few hours, but wearing pain-free yoga pants allowed me to blissfully deny that I hadn't totally figured out this monster of a health problem.

The story continues. After years of symptom management being the best I could hope for, I finally found a doctor who not only correctly diagnosed me as being centrally sensitized (meaning that my central nervous system was the root of my pain, not my skin, muscles, bones, etc) but who also stepped up to the plate and became a true partner in healing my CS. 

My symptoms dropped dramatically, until...they were gone.

The yoga pants remained.

Trigger-avoidance was a coping mechanism that had deeply ingrained itself into me over nine long years. In the back of my mind I feared that if I stopped avoiding situations that had previously caused pain, then the pain might come back. That included wearing regular dress pants. What if I put them on and the pain returned and I wasn't as healed as I thought I was? That possibility was too terrifying to contemplate. 

A few weeks ago I was traveling with my in-laws, who love to outlet shop. Wandering the vast Floridian malls, I remembered my friends' question, and for the first time in almost a decade I bought three pairs of properly fitting dress pants. Holy God.

Last weekend was the IPPS Meeting. While packing, I scanned my closet. Wearing yoga pants to a professional medical conference was not the image I wished to project. 

But there were those pants. Three pairs, hanging, as yet unworn. Professional, flattering, with an unusual edge I so appreciate in my attire. I carefully folded them so they wouldn't wrinkle and added them to the suitcase.

Dear reader, I wore them. Three days in a row I wore them. Through hours of sitting I wore them, through eighteen hour days I wore them, through an airplane ride I wore them.

And you know what? They didn't hurt at all. I didn't even notice them.

And just like that, I became a "normal" person. A person who wears yoga pants to yoga, and regular pants the rest of the day. A person who doesn't have to stand in the back because it hurts to sit. A person who can focus on the task at hand because she isn't trying and failing to ignore her ouch-y crotch.

So, thank you to my dear friends Subechya and Andrew for asking me why I always wear yoga pants. And thank you IPPS Meeting for being unrelentingly professional, and thank you to my own sense of social propriety and fashion sense and bravery which all contributed to me wearing Those Pants, Those Pants, which from this day forward shall be known as

Those. Awesome. Pants.

Here they are, my glorious, awesome pants.

The International Pelvic Pain Society's Annual Fall Meeting Comes to a Close

As I write this it is early Saturday evening and I am on the Blue Line train headed to O'Hare.

There are more sessions tomorrow for providers who want continuing education credits, but for me the IPPS Annual Fall Meeting is over.

It's hard to believe that less than a week ago I was telling you how nervous I was for this conference. Despite my initial jitters, it was so...easy.

At the end of each lecture there was time for comments from the audience, and individuals making said comments were asked to introduce themselves. Aha! Opportunity knocks! I asked a few questions to the early presenters, so people would know me (I figured this technique out at the BlogHer Conference this summer.) When I introduced myself, I did so in a memorable but not over-the-top way, put my intelligence and humor on display, and...it worked!

For the rest of the conference whenever I introduced myself, people would respond "Oh, you're the blogger!"  Victory!

I was happily surprised by the warmth with which I was received.  The majority of attendees were physical therapists, who generally develop deeper relationships with their patients since they get to spend more time with them than doctors do. Being well-acquainted with the struggles of their patients, and well-aware of the negative impact depressing chat rooms have on patient morale, they could see the need for positive patient-to-patient interaction on the internet. (The doctors I met did too, FYI.)

Some attendees wanted to ask me questions about the patient experience: How do I start a support group? Will patients respond to an invitation from me even though I am not a patient myself? I get so upset when patients fail to comply with my recommendations, how can I build trust and help them help themselves?

One keynote speaker even took it upon himself to introduce me at the Friday night cocktail hour to as many people as he could. "Faith, you should meet so-and-so!" It was great, and I was and still am deeply appreciative to him. I think it speaks well not only of his character but the tone of the society that someone who could have easily overlooked me instead welcomed me and did his best to integrate me into the group.

My mind is on autopilot right now, as it reached full capacity a while ago. It is bubbling with questions, ideas, visions. I learned so much - there were ten presenters on the first day alone - and it will take a while for me to wade through the swirl of thought bubbles and turn them into useful information for you.

In the meanwhile, I am so glad I took this leap. Fun fact: as recently as this past May, I wussed out on going to the Alliance for Pelvic Pain's Conference (which is for patients, and therefore wouldn't have been so scary, right?) At that time I already had the idea for this blog, but was waffling. I wasn't quite ready to share this part of my life with the world. I was scared of being vulnerable and exposed. Getting to a point were I had the guts to attend not only a conference, but one for which I was not "qualified," has shown me how much I have grown in only six months.

You may not think of attending a conference as being a healing agent, but for me it was. More than anything else I have done, attending this conference normalized my experience. Everyone spoke about pelvic pain out in the wide open public! The signs saying "International Pelvic Pain Conference - 4th Floor" or "International Pelvic Pain Conference - Registration" were out alongside the signs directing people to the knitting convention being held in the same hotel. The bathroom chit-chat on breaks breezily used such terms as "vaginal" or "vulvar" or "uterine," regardless of the non-attendees waiting in line alongside us. This group of professionals were more comfortable with communication about pelvic pain than even my old support group, whose members had so many past traumas about their pelvic pain that opening up about it was a challenge. Not these folks. They live and breathe painful pelvises and if they have ever had a shyness or an unwillingness to discuss female anatomy, those days are long gone. 

I was touched by how much the attendees cared about helping their patients get better, and saw that many of my frustrations were theirs as well. They too were upset that most medical professionals don't know about pelvic pain, that their patients often showed up to them in tears after years of failed attempts at getting appropriate care, that insurance wouldn't pay them for the time and attention needed to work with people facing the complexities of chronic pain.

It was comforting to be surrounded by 380 people from a variety of specialties who knew what I was talking about, could empathize, and were invested in making my life better. Everyone there realized that our numbers were small given the immensity of the problem at hand, but knowing that there are wonderful clinicians out there - few in number though they may be - made me hopeful.

Yes, this conference was great. Owning my pelvic pain, instead of detracting from my happiness, has instead added to it. Who knew?

Yay!

Here are some fun photos of Chicago I thought I would share with you:

The skyline with the Lurie Garden at Millenium Park in the foreground.

The edge of Lake Michigan. I love that the two boats on the left belong to the Oakland Park District - I wonder what they are used for?

Another shot of the lake.

I spotted this along South Michigan Ave...Swami Vivekananda spoke at the Parliament of the World's Religions at the Chicago World's Fair in 1893, became a well-known orator in the United States and Europe, and is widely credited with introducing yoga to the West - which is why I know about him, and why I took this photo.

Tables set up for chess players on South Michigan Ave. It was fun wandering through the river of big city life, getting caught up in the flow and then pulled into an eddy like this scene, a point of slowness and concentration alongside the zooming current inches away.

IPPS Annual Fall Meeting - It's Here!!

Today (Thursday) from 8:00am to 5:00pm I was at the IPPS Annual Fall Meeting Basics Course, a one day seminar

• ...for medical students, residents, gynecologists, physical therapists, urologists, primary care physicians, nurses, surgeons, pain management physicians, psychologists, neurologists and basic science researchers who would benefit from a more detailed introduction to the concepts and terminology of pelvic pain issues and treatments before attending the IPPS Annual Fall Meeting on Chronic Pelvic Pain.

Wow. Looking at the list of all the different professions represented here makes me appreciate how multi-faceted pelvic pain is.

It was great. Over the course of a whopping ten lectures, a few breaks and a cocktail hour, I learned a ton, met fabulous people, and got a lot of ideas not only for future blog posts, but also for how the medical world can change to better serve both patients and clinicians.

It's now 9:30pm and I am snuggled in the top bunk of my HI-Chicago  hostel room, just a few blocks away from the Palmer House Hotel where the conference is being held. 

I am so grateful to be here. I would love to fill your brains with all the wonderful things I learned today, but that will have to wait for future posts...yawn... It's bedtime, people. 😴

IPPS Annual Fall Meeting Starts on Thursday!

Oh boy oh boy oh boy! This Thursday through Saturday I will be at the

International Pelvic Pain Society's Annual Fall Meeting 

Yikes.

It is intended for doctors, physical therapists, and students, not patients, so it took a lot of guts to sign up. "Who am I to crash their party?" I wondered. And yet, and yet. I am so looking forward to learning, and sharing that information with you. I also hope to spread the word about this website, so more women can find it and get the sisterhood they need to make it through to the other side.

The meeting is in Chicago, which I have only driven through once before, and happily the event is downtown so maybe I will get a chance to see a few sights between sessions. (Very few - the schedule is packed.) I'll be crashing at the local hostel, and perhaps will pass the word on there about YatraYoni as well.

I am excited, but also nervous.

I'll be traveling alone to an unfamiliar place, going to an event for which I am under qualified :). My good girl complex is rearing it's ugly head - I am not one to bend the rules like this - so I am trying to remember two favorite quotations of mine:

Well behaved women rarely make history.

and, from Eleanor Roosevelt,

Do one thing every day that scares you.

(Okay Eleanor, I am and I will!)

Of course, other than my handy dandy quotations, the other motivation I fall back on is YOU.

You are the reason I write, the reason I research, the reason I fly halfway across the country to attend a medical conference when I am not a medical professional. I write for you because ten years ago, no one wrote for me. 

Please know that when you are in despair, there is a real person who has walked this path and won, and she is reaching back to help you along. Not only that, but she is thrilled at the support YOU are giving HER by reading this blog.

We can do it! Hugs!

Oooh, the Chicago Skyline. Windy City, here I come!

ADDENDUM: November 3rd, 2014. I found the name of the woman who coined the phrase "Well-behaved women rarely make history" in this article here! Her name is Laurel Thatcher Ulrich and she is a history professor at Harvard.