Sweden = Awesome

Amazeballs!

I stumbled across this article the other day in the Women section of the Huffington Post. Apparently a sex ed group in Sweden decided to do something about the fact that there is no Swedish word for female masturbation, held a nationwide competition, and recently revealed the winner: "klittra," a combination of the Swedish words for clitoris (klitoris) and glitter (glittra.)

From their spokesperson Kristina Ljungros:

"If we don't have a word in the language, how can we even talk about it?"

Well said, my dear, well said.

The sponsoring organization, the Swedish Association for Sexuality Education, is currently lobbying to get klittra added to the official Swedish dictionary. It's not their first time playing with language - in 2010 they translated a Swedish pamphlet combating misinformation about virginity and the hymen, instead using their newly coined English phrase "vaginal corona." 

I'd love to see a national competition to create new English words not only for female masturbation, but also for female anatomy and experiences, words that celebrate sexuality, the body, and the feminine. Anyone else? Adding it to my to do list...

Evidence-based Medicine Part 3: How is this relevant to me?

In Part One of this post I discussed the general background controversy of evidence-based medicine (EBM,) and some examples of how that is playing out in the pelvic pain world.

In Part Two we looked at a big ol' red flag that is not being discussed in the EBM controversy.

In Part Three - that's this one! - I break this mess down and discuss how it applies to you and the health of your lady parts.

* * *

What does all this discussion about the strengths and limitations of EBM  mean for you?

Rather than waiting for someone else to fix us, we have the opportunity to step up and be in charge of our care. Be a partner rather than a patient.

To start, you'll want health care providers who have experience working with your issue. They have a higher probability of following the research out there, and will have the most anecdotal evidence to guide their suggestions.

You can find some of these people through "Find a Provider" pages at the International Pelvic Pain Society, the National Vulvodynia Association, and the American Physical Therapy Association's Section on Women's Health.

If you can't find anyone in your area, you can always try contacting someone close by to see if they have any suggestions.

What if you don't have access to someone with this experience? 

Then you need to be proactive and find the doctor who is most willing to take the time to find what little research there is, and combine their knowledge of your situation with the information they get. You can find great tips on how to do this within the limitations of our convoluted and time-strapped medical system in 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 you should totally have anyway - in my opinion it's one of the best and most comprehensive books out there for V pain.)

No matter what doctor you have, you will have to be willing to take risks and try new things, and be prepared for some of those things to not work. No need to despair if that's the case. Bring your new information back to the table and keep working on the puzzle.

Since your doctor is going to be more humble about the limits of their knowledge, they are more likely to be open to whatever feedback and research you provide. 

How do you find research? You can access it through the NVA. You can also participate in studies through the NVA, helping to create more research. (FYI they recently overhauled their site, so if you haven't been there in a while, check it out.)

Another way to incorporate EBM into your care is to research information from studies on related topics. For instance, Dr Dean Ornish has extensively researched the impact of lifestyle choices on chronic illness.

If you are interested in trying something that doesn't have evidence behind it, or that is outside the bounds of Western medicine, your doctor may be more willing to support you than a doctor who is used to relying on evidence alone. Your experiment stands to benefit not only you, but others as well; your doctor can add your experience to his or her anecdotal evidence.

* * *

A great example of someone who successfully healed with zero evidence of any kind is Sarah Kennedy.

Faced with painful sex but never getting an official diagnosis, she stumbled upon a technique called Orgasmic Meditation. Invented not for pelvic pain but to enhance one's sexuality, OM involves gentle repeated stroking of the clitoris, alone or from a partner. Boom. Regularly practicing OM healed her V pain and she is now a life coach who specializes in helping women experiencing painful sex and low libido. You can learn more about Sarah's story and her coaching practice here.

Even if you feel like you are running out of options on the EBM for V pain front, there is always something else out there. The world is a big place.

* * *

It's true that we don't have as much evidence to go on when it comes to treatment for V pain. That doesn't mean we can't benefit from EBM. More importantly,

The lack or existence of evidence on treatments for V pain is not the sole determinant of whether or not we get well.

These bodies are ours and no one else's.

And we are 100% capable of taking care of them.

Getting Your Providers to Communicate

Sara Sauder, DPT over at Blog About Pelvic Pain just wrote a great post on how to get your providers to communicate.

As a patient I appreciate her perspective as a health care provider. She is very honest about how hard it is to get doctors to talk with each other.

Seeing this helps me realize that the struggles I face as a patient are not unique to me, but are part and parcel of a system that unfortunately isn't often designed to care for patients.

Thank you Sara!

Evidence-Based Medicine Part 2: Who Decides What Gets Studied?

In Part One of this post I discussed the general background controversy of evidence-based medicine (EBM,) and some examples of how that is playing out in the pelvic pain world.

In Part Two - that's this one! - I 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.

* * *

The big ol' red flag: 

Who decides what gets studied?

Think about that...

It's complicated right? Someone has to get an idea, they have to convince other people it's a good idea, they then have to convince still more people to give them money to research this idea, and then after that study comes out, well, one study doesn't mean much, so lots of other people have to jump on the bandwagon and get money and research the same topic until there are hundreds of studies, most of which have the same result, at which point we have a body of evidence.

What could possibly be imperfect about this system? Some roadblocks:

(1) Problem Identification Bias: If someone is not aware of a problem, they cannot be expected to solve it. (This is why v-pain usually doesn't make it out of the gate.)

- You need demand to get supply.

(2) Idea Generation Bias: Good science comes from good scientists, who have been trained in western scientific methodology and know a lot about western science and western medicine. But they may not know anything about other healing traditions from beyond their cultural experience and training, thereby cutting them off from potential avenues for research. 

- Scientists aren't going to propose solutions based on something they don't know or understand.

Both the genesis of the question and the proposed solutions are inherently biased, therefore worthy problems and worthy solutions may never make it past this point. What happens to the ideas that do?

(3) Salesmanship Bias: To convince others to join them and give them money, scientists have to have clout, they have to be able to sell their ideas to other people. Just like anything else, there's gonna be horse-trading, office politics, personal and institutional agendas, competing financial priorities, personality differences, and a whole host of other human realities at play here. 

- The road to funding is paved with politics. 

(4) Funding Bias: Studies are expensive. The largest funder of medical research in the world is the National Institutes of Health (NIH,) which is funded by the US government. Pharmaceutical companies spend more than any other industry lobbying... the US government. How science gets funded is a post (actually, a library of books) in and of itself, but for now, you do the math.

- There are many agendas other than a patient's well-being that determine what studies get funded.

(5) Publication Bias: The study has to get published in a reputable medical journal. No one along the road to funding will greenlight a project that has little chance of publication, for whatever reason. 

- The road to publication is also paved with politics. 

The initial idea had to go through a lot of hoops in order to complete one study, but EBM requires many high quality studies.

(6) Repeat Studies Bias: Where's the professional acclaim and advancement for researchers, funders, or publishers to churn out endless studies looking at the same thing? No one gets credit for replicating a study for the 700th time, even though mundane grunt work is the foundation of solid evidence. 

- Ideas may not get the follow-through necessary to create a substantial body of evidence.

In short,

Equally good avenues for research may not get equally good support.

Even when a great idea makes it all the way past step (6), it still needs to be taught to doctors and translated into clinical practice before it can actually reach patients.

* * *

We as patients and medical providers need to discuss and understand the benefits and limitations of evidence-based medicine. It is not a panacea.

On the winding road outlined above, it is easy to see how problems and solutions worthy of research can get overlooked or left on the cutting room floor.

And yet people still have to make medical decisions regardless of whether or not research exists.

In Part 3, we'll discuss how to do just that.

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!