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)!

Easy Research Participation Opportunity!

There's a new opportunity for women with v pain to participate in research!

No travel or time in the stirrups required. It's an online questionnaire from the same folks who brought you the VPAQ (and is indeed a followup to that study.)

Most of you are probably eligible to participate:

• you must have regularly experienced pain in your vulvar/genital region for at least six months
• be fluent in English
• over the age of 18
• have access to the Internet

To fill out the survey hop on over to the Queen's University Sex Lab info page. (I wanna work at a place called "Queen's Sex Lab." How awesome is that?) And you can follow them on Twitter, @qsexlab.

It's an easy peasy way to help advance much needed research on this topic. So go ahead, make your voice heard!

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.

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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.

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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.

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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.

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? 

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.