Research Participants - that's YOU! - NEEDED

I was renewing my NVA membership recently and the "Urgent Appeal to Vulvodynia Patients" on the home page caught my eye.

Apparently some studies on v pain have been cancelled because researchers couldn't find enough patient volunteers. Yikes!

For so long v pain was completely ignored by the medical community, so understandably many women are frustrated by the lack of attention and quality treatment options available. But now that they ARE beginning to research it, well by golly, we'd better step up and help out!

I mentioned an online study that you can easily participate in not long ago - you can find it the post about it here or jump right to the link here.  You can find additional studies you may be qualified for through the NVA's web page on the topic. 

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I can't help but wonder why researchers are struggling to find subjects. Is it because suffering women don't know about these opportunities? The cultural silence and shame around this topic would definitely help to explain that, and encourages me to continue to be the change I wish to see in the world by writing this blog, among other things. 

Or is it that enough women know about the studies (again, doubtful)...but they are too shy or scared to step up? Is it because they are afraid treatments could make things worse, or the proposed treatment is somehow unappealing? Are they averse to being labeled, or coming out of the denial closet? Or do they just not prioritize v health, an understandable situation given the many pressures women face? (Note all of these reasons can be traced back to cultural shame and silence.)

If you are interested but concerned about volunteering for medical care that doesn't jive with your preferences, fret not: some studies are researching acupuncture, others looking into drugs, others are simply gathering data on the people affected. Peruse the listings, you might be surprised to see that there is something in your comfort zone. (Or ya know, in the neighborhood at least. Because nothing having to do with v pain is in anybody's comfort zone, amirite?)

It could be that there potential recruits who are willing but ineligible - for instance, studies often require that women are not pregnant or trying to get pregnant, or focus on a very specific set of symptoms or age bracket, or require that you aren't taking other medications.

Regardless of the reason, I would hate for the emerging research on v pain to fall apart because we the patients didn't supported it. Noooooooo!!!! That would suck so hard.

I strongly encourage you to consider participating in scientific research, for your health and those of others. Check it out! By participating we get to be each others' medicine. How cool is that?

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PS Did this post get your brain gears crankin'?

Feel free to start a conversation below (it's okay, you can be anonymous)!

Lube-a-licious! Interview with Sarah Mueller of Smitten Kitten

Woo hoo!

I am so excited to share this interview with Sarah Mueller, an employee at progressive sex toy store Smitten Kitten in Minneapolis, Minnesota. I didn't know how much I didn't know about lube until talking with the fabulous Ms Mueller!

We like to assume that personal care products would not be on the market if they were not safe for use, but sadly that is not the case. Sarah's research led me to throw away all of three of my water-based lubes and replace them with more v-friendly versions.

Listen to the interview to learn more about lubes and how to select one that will enhance instead of harm your v health! You will notice that we reference some charts and educational materials Sarah made in the interview - you can see them below.

(If you're not sure what lubes can do for you, check out last week's post here.)

If you have follow-up questions you can hop on over to www.smittenkittenonline.com and Sarah will hook you up!

Without further ado, the interview:

...and the material we reference in the interview:

Click here for the link to the World Health Organization Advisory Note: "Use and procurement of additional lubricants for male and female condoms: WHO/UNFPA/FHI360." 

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PS Did this post get your brain gears crankin'?

Feel free to start a conversation below (it's okay, you can be anonymous)!

College Students Researching V Pain

I had the pleasure this past Friday of giving a Skype presentation to a group of five rising sophomores studying vulvodynia and immunology as part of a summer research project. I met their professor a few weeks ago at my college reunion, and she asked me to talk to them so they could have a better understanding of what v pain patients go through.

I sketched out my journey for them, and then led a discussion on how societal values shape scientific research - i.e, helping them understand WHY it was so hard for me to find care. Within the lab scientists work hard to eliminate bias, but what question they are researching is subject to the blindspots and prejudices of the society in which that scientist operates.

I hope that they took away an understanding not only of the importance of the research they are doing and ideas for how they can support and create change outside the lab, but also a greater sense of the context in which they practice science. It was fun to hear their comments and questions, to see the gears whirring as they took it all in.

I have to say it was SO AWESOME. If you told me ten years ago that I would one day talk about my v pain in public to strangers, I would have been have been mortified. But - with a mere eleven years of processing my shame and baggage around the topic under my belt - it was great. V pain is connected to so many topics I already love talking about: the role of women in society, sex, feminism, social change, justice, class, race, power structures, history, relationships, emotions, spirituality, personal growth...the list goes on. I am by nature a very holistic, big picture thinker, someone who loves to see how everything is connected, and v pain lends itself to that ability very nicely.

This was the first time I have ever (1.) done a presentation on v pain and (2.) told complete strangers about my experience of v pain in a conversation rather than via writing (totally different not hiding behind the keyboard!) and (3.) given a presentation of any kind in an college setting, as a non-student.

It was a big step for me. This Skype presentation helped me see how much progress I've made in learning how to communicate about v pain, and it was so validating to see that others could benefit from my knowledge. Sure, I stumbled and was less than articulate at times, but isn't there a saying about "Speak the truth, even if your voice shakes?"

So the moral of the story is: 

Even if you are deeply troubled by your v pain and have a tough time talking about it today, that doesn't mean that you won't someday shake off those shame-shackles and be completely capable of telling your story from a place of power and pride.

You are amazing, wherever you are on your journey. Remember that!

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Did you know that you can comment anonymously?

Yup! Feel free to start a conversation with complete privacy. ;)

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.

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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.

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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.

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?