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!

Is chronic illness good?

This post was inspired by a recent, awesome, thread on ChronicBabe.com, which you can find here. It got tons of comments, and comments on comments, so I highly suggest that you go check it out!

The instigating question: is there any way chronic illness can be viewed as a good thing?

My two cents:

1. Chronic illness = Bad. 

2. Response to it = your choice.

Over my years of sickdom, I started out thinking "Chronic illness is evil." Then when I saw all of the positive changes in my life I made due to illness, I thought "Gee, I guess chronic illness is a blessing in disguise."

I ended up in this most recent paradigm when I realized that there is a difference between chronic illness and the response to it. 

All of the infinite "blessings of chronic illness” came from me: my decisions, my actions, my changes. The illness itself has never-ever-ever produced the tiniest bit of goodness.

When I used to say "Chronic illness has destroyed my life," I disempowered myself. By remaining in resistance, I left myself a victim with no hope.

When I used to say "Chronic illness has made my life better," I again disempowered myself. By attributing the positive change to the wrong source, I glorified suffering (bad idea!) and failed to recognize my own strength, power, and love.

Now I say ”I have responded to chronic illness in a way that has brought me many, many blessings,” and so I empower myself. Not only do I recognize all the work that it has taken to get this far, I recognize that no matter what life throws at me I can again respond in a way that benefits me. 

Is my life better due to chronic illness? Hell no. 

Is my life better due to my response to chronic illness? Hell yes. 

The famous saying does not go

“When life hands you lemons, be grateful, because they will magically become lemonade.” 

Nope, that lemonade ain’t gonna make itself. And so we say:

“When life hands you lemons, MAKE lemonade.”

Whether you choose to or not - is entirely up to you.

Great Post on “When Sex Hurts There is Hope"

Hey all,

I'm featuring a great, recent post from When Sex Hurts There is Hope. This blog started before mine, in April 2014, and it has grown so much since then: there are loads of great posts on a bunch of different topics.

I appreciate how Sarah recognizes that the effects of sexual pain are not only physical but also mental, emotional and spiritual, and therefore healing must address all four factors as well. She generously shares the lessons she has learned, validating the struggle while avoiding despair (which is probably why I am so happy with this site - that is exactly what I wish to provide to my readers as well.)

The site is well-named, hope abounds there.

The post is entitled "Being Comfortable with Your Doctor," and writes about the importance of the patient-doctor relationship when dealing with a sensitive health topic. It goes nicely with the previous two posts from this week, (Flare Update 2 and Flare Update 3,) in which I discuss my recent physical therapy and neurology appointments.  The success of those sessions, and indeed any and all of my doctor appointments, is a result of the quality of the relationships between me and my health care providers.

Bravo Sarah! 

p.s. scroll down for the complete text of ms dickinson's poem

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“Hope” is the thing with feathers - (314)

BY EMILY DICKINSON

“Hope” is the thing with feathers - 

That perches in the soul - 

And sings the tune without the words - 

And never stops - at all - 

And sweetest - in the Gale - is heard - 

And sore must be the storm - 

That could abash the little Bird 

That kept so many warm - 

I’ve heard it in the chillest land - 

And on the strangest Sea - 

Yet - never - in Extremity, 

It asked a crumb - of me.

Featured Post

Hey all,

Today I refer you to the Fangirl Interview with Rhonda Kotarinos, a pioneer in pelvic pain physical therapy. It was recently posted on Blog About Pelvic Pain, a website run and written by by Sara Sauder PT, DPT, a physical therapist in Austin. 

This particular interview is aimed more at physical therapists than patients, but sometimes it's useful to see life from the other side of the lab coat. In reminds me that health professionals are not all-knowing, and behind the scenes they are still figuring out what works and what doesn't in a world where limited information leads to controversy about treatment options.

That in turn means that pelvic pain patients need to be even more active in their own care than patients who have a well-researched medical condition (not that those people are off the hook by any means.)

Thus, there is a lot of relevant material for patients in this interview. 

Due to the lack of physician knowledge about the existence of physical therapy for pelvic pain, you may not have heard that physical therapy is a fit for you. I especially recommend this post if you are not aware of pelvic physical therapy, are currently in physical therapy, or have had limited success with it - who knows, you may learn something that you can pass on to your PT so they can treat you better.

While you're there, check out the rest of Sara's site - there's all kinds of good stuff there!

Gettin' yer sexy on...Yes, it's possible

Highly relevant post over at ChronicBabe.com this week!

Jenni answers a great question from a reader, "How can I learn sexual confidence in spite of my illness/disability?"

I hope that her answer will be of use to you. I found it very encouraging since it reminded me of the fact that pelvic pain sufferers are not the only folks challenged with creating rewarding sex lives. Yup, it affects other folks with chronic illness, and let's face it, pretty much any human being.

Sexuality is about the whole person, not just the parts.

Remember to read the comments to see additional resources suggested by the awesome Chronic Babe community, and hear about their challenges and successes. 

Here's to a randy weekend!

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A note on the heart graphic:

One of my Women's and Gender Studies friends in college told me that the heart symbol evolved from a stylized depiction of a woman's vulva, viewed straight on, with her lifting the top two corners to show it off. I have no way to verify this, but I love the idea of replacing the heart's sappy innocence with something brash and carnal. It makes me smile a subversive smile whenever I see them...Rowr!