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!

Participate in an Online Study! VPAQ

I think it is fair to say that ALL sufferers of V pain are pretty frustrated with the lack of research on the topic. Now there's a chance for us to make a difference!

Queen's University in Kingston, Ontario is conducting an online "Vulvar Pain Assessment Questionnaire." So no matter where you are in the world you can pitch in!

Which you totally will because you totally rock. It will be glorious to have someone listening for once, no? 

From their website:

The purpose of the study is to develop a questionnaire (the VPAQ) that will help health care professionals assess symptoms of chronic vulvar pain (CVP; e.g., vulvodynia, provoked vestibulodynia.)...In order to choose which are the best questions, we are seeking help from women who experience CVP...

In order to participate, you must have experienced pain in your vulvar/genital region for at least three months. You must also be fluent, over the age of 18, and have secure access to the internet.

Part 1 takes 30-45 minutes. Part 2, which is optional, another 30-45 minutes. You do not need to do both at the same time. That's only an hour to an hour and a half to help save the world. So worth it!

Here is the link.

Charlie Brown Blues

I know I already posted this cartoon on Facebook, but I love it. I've been headache-y and feeling crummy this week, so a lot of curling up on the couch, which doesn't help.

This connection between posture and attitude is probably why I have found a daily yoga practice to be so supportive in managing my moods, anxieties, and fears around living with chronic pain.

If you prefer to obtain lifestyle recommendations from scientific resources rather than cartoons, you may want to check out this great Ted Talk with Amy Cuddy:

Body language affects how others see us, but it may also change how we see ourselves. Social psychologist Amy Cuddy shows how "power posing" -- standing in a posture of confidence, even when we don't feel confident -- can affect testosterone and cortisol levels in the brain, and might even have an impact on our chances for success.

Stand tall, gorgeous!

How Do Culture and Belief Affect Our Capacity to Heal?

Yesterday I was researching chronic pain and stumbled across a great article on how cultural differences affect the success of treatment outcomes. 

What?

The writers identified two main ways in which their physiotherapy training (that's physical therapy for us Americans) failed them when they went to work in a rural Zulu community in South Africa, serving women with low back pain.

For starters, the way the women used their body (farming, carrying children on their backs, carrying water and other heavy loads on their heads) was so different from how Westerners use their bodies (sitting at desks, driving) that the biomechanical and ergonomic instruction the physiotherapists had learned in school did not apply. 

Second, this population's beliefs about the origin of pain were different than those of the physiotherapists. In the Zulu community pain is "understood primarily as a whole-person illness rather than as a sign of isolated injury."  Frequently this whole person-illness is blamed on being bewitched, and traditional healers treat it by using various methods to counter the bewitchment. The suggestions made by the physiotherapists therefore did not make sense for the patients.

Another obstacle from the clash of two different belief systems is that in Zulu culture healing is received from another, and the sick person is a passive recipient; their continued health is not seen as being dependent on self-care. This led to low rates of follow-through on the self-care techniques the physiotherapists taught their patients, a crucial component of this particular model of healing.

While there were many other obstacles to successful outcomes (insufficient privacy in the clinics, not enough translators, burdensome distance for the women to travel, etc.) the two listed above were the only ones related to the training of the physiotherapists.

I found this fascinating.

Low back pain is a huge problem in the West and though poorly understood, frequently blamed on how we use our bodies. Yet these women were suffering the same pain although they used their bodies in a completely different way (one that had more respect for spinal alignment, it should be noted.)

This implies that the pain is coming from different sources, and therefore our "modern" understanding is limited. Or, the pain is coming from the same source, which has yet to be discovered.

Isn't it interesting that the difference in beliefs surrounding the source of pain made it difficult for people from one culture to effectively treat those from another?

The paper did not include any data on how effective traditional healers were vs the physiotherapists, unfortunately, which I think would be a great avenue for further research.

(Lest you think that traditional healers must have been ineffective or else these women would not have had an incentive to use physiotherapy, the writers did note that a main barrier to traditional healing was that it was considerably more expensive than the physiotherapy clinics, which I believe were state-funded.)

Regardless of which one was more effective, the existence of two different systems implies that there is more than one way to get well, which I was quite pleased with because it is in alignment with my own beliefs and experience.

This paper also demonstrates the shortcomings of allopathic (Western) medicine, which here in the multi-cultural United States is dominant. What are we missing out on by not fully incorporating so-called alternative and complementary medicine into our health care system? What are we missing out on by not developing a model of care that embraces different solutions for different people, not only based on physiology but mentality?

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If you want to read the full article, you can find it here. A summary is here. Should those links ever be broken, the paper is entitled "'Our Training Left Us Unprepared' - Two Physiotherapists' Reflections After Working with Women with Low Back Pain in a Rural Zulu Community in South Africa," and can be found in the Journal of Community and Health Sciences, October 2013, Volume 8, Issue 2. 

Round-up: The Autonomic Nervous System

Got two minutes? This video is about the Rest and Digest function of our nervous system and how you can use it to help heal chronic pelvic pain.