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)!

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. ;)

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.

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.