Introducing New Writer Laura!

Hi there everyone! How is it halfway through the year already?? 

Way back in January I realized that it was time for me to move onto other projects, but I didn't want to let this site become a ghost site. I crossed my fingers and asked if any of you would like to step up and take over for a year. Miraculously, my shot in the dark worked!

Over the past few months the new writer and I have been corresponding back and forth across a continent and an ocean and eight time zones, figuring out the details of this transition (and completely neglecting you I'm afraid. Ha ha.)

I am so pleased to welcome LAURA as the new writer on this site! Since I live in the US and she in the UK, her presence will make this site international, which makes me really excited. I thinks it's important to note that v pain is a global issue, though as far as I know we have no statistics on whether rates vary or are similar in different regions around the world. (Research project anyone?)

In addition to writing here, Laura will be playing around with our Facebook page and our new Twitter handle, @myVmatters. If you fill out the website contact form, it will go to her.

As for me, I will still be here, writing posts occasionally. I am by no means leaving my passion for women's and holistic health behind, only exploring new avenues for them. If you are still interested in reaching me, you can do so here.

Although Laura and I have chatted about what we are doing with this site, our plans are not set in stone. We are learning (ahem, making things up) as we go.

I am so excited to read Laura's posts and see what the next year brings for My V Matters!

As always, thank you so much for coming along on this crazy ride with us...

Here's to new adventures!

 

 

 

Write for My V Matters - 'cuz yours does too!

So after a lot of dragging my feet and hemming and hawing, I have finally decided to move on from writing this blog.

What was the clincher? My uterus. I was doing a mind body meditation in which I was chatting with my body and seeing how it was doing and noticed that my uterus was kind of dull and drained. I checked in with it and asked how I could help, and the answer was loud and clear: "Give up the pelvic pain bandwagon for cryin' out loud! You've got one foot in, one foot out, you don't really want to keep doing this, and I am so over it." Since my uterus is the queen of my creativity, I heeded her advice. And immediately felt more energized.

Sometimes no amount of brain thinking gives me the immediate clarity of physical wisdom. 

I have closed my Yoga for Pelvic Pain MeetUp group, and notified another organization that I won't be available to teach for their patients this spring. I withdrew from a pelvic pain workshop.

And it feels GOOD.

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What of this website though? I've worked so hard to make My V Matters matter, isn't that worth something? I don't want it to become one of those sad, abandoned blogs...

One option is to thank it for its service and kill it off, but I wanted to give you, oh wonderful community, a chance to keep it going.

I got this idea from another blog: writer rotation. Rather than remove the blog or leave it as one of those dreadful inactive ghost blogs, I would have another woman take over writing responsibilities for a year. My old posts would stay up, and readers would benefit from another perspective. At the end of Writer #2's year, she could commit to another year or pass the torch.

What is the benefit to you? I learned so much from forcing myself to write consistently on this topic. It encouraged me to be more active in looking for outside resources, and has also been a great tool for self-reflection, confidence-building, and learning to be more loving with myself.

Interested? Here's what I'm looking for in a second writer:

  • Tone: I would like to keep the tone of this blog the same: honest about the challenges v pain presents, while still being hopeful and positive. We want to uplift readers, not bring them down!
  • Content: I have written a lot about spirituality and the emotional side of v pain, but you would be welcome to take it to a more technical or science-y place if that floats your boat! As long as it is about v pain and your experience, that's cool. Also, I have chosen the written word as my primary medium, but you don't have to: you could provide poetry, video, music, visual art, etc.
  • Your writing background: You don't have to have any special degree or background in writing, but it would be great if you enjoy writing and can write clearly, without spelling mistakes or grammatical errors (unless done on purpose for creative expression of course!) 
  • Images: *Any and all images would of course have to be legally obtained,* ie your own or used with permission (no copying and pasting stuff off the web.) I learned how to use Canva (the free version) to create images for each post. You could use Canva as well, or provide your own imagery: drawings, photos, whatever.  If you are really opposed to images, it's not a deal breaker - maybe we can redesign to site to make it look good without an image for each post.
  • Frequency: I currently write once a week and post on Wednesdays. You do not have to keep the same schedule, but I would like you to commit to completing at least 12 posts (ie one a month), preferably on a consistent schedule of your choosing. Of course, this is a hobby and not a job, so you might not hit that target, but I would like you to at least be aiming for one. (I don't want someone to pump out 15 posts in a week and then do nothing for the rest of the year.) Part of what creates community, and the personal growth benefits of writing, is consistency and showing up. :)
  • Money honey! I pay an annual fee to Squarespace for hosting the blog and the use of their tools. If I am to pass the reins onto another writer, I do not want to keep paying this fee. If you are willing to take on that cost yourself, awesome, but if you are not able to than perhaps we can set up a donate button or pass the hat somehow? You don't have to be able to front the money yourself, but I would require a willingness to help me problem-solve that issue.
  • General Awesomeness: Since you and I would be working together to make this happen, it would be cool if you are generally awesome: respectful, responsible, creative, someone who would be great to work with on our little two-person team, but also someone independent and committed enough so that I can step back knowing that the website is in good hands.

 

If you want to write for My V Matters for a year, please let me know by February 1st, 2016, and write a sample post and a paragraph about why you'd like the gig by February 15th, 2016. (That will give you enough time to write a post, but if no one is interested I'd rather know sooner rather than later.) Start time is negotiable, but I am thinking that you would be taking over by March 1st. You can get in touch through the contact page.  

Til then, to a happy pelvis!

 

 

2016 Patient Conference

Here I am, back from my break and armed with oodles of clarity for the coming year!

JUST KIDDING.

Turns out December is a terrible month to take a break from blogging if the goal is clarity of purpose.

I was so distracted by the holidays and its inevitable disruption to routine that I didn't get as much of a sense of how the absence of writing and teaching about v pain affected my life. 

As such I am still feeling it out, trying to figure out what my options are and where to head next.

IN THE MEANWHILE,

the Alliance for Pelvic Pain is having their second patient retreat May 20-22 and discounted early bird registration ends February 1st!

This event is unique in that it is an educational conference for patients, not doctors. If you are interested, you can learn more on their website here.

I hope your holidays were wonderful and you are excited about starting this beautiful new year.

Happy 2016 everybody!

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

* * *

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!