The International Pelvic Pain Society's Annual Fall Meeting Comes to a Close

As I write this it is early Saturday evening and I am on the Blue Line train headed to O'Hare.

There are more sessions tomorrow for providers who want continuing education credits, but for me the IPPS Annual Fall Meeting is over.

It's hard to believe that less than a week ago I was telling you how nervous I was for this conference. Despite my initial jitters, it was so...easy.

At the end of each lecture there was time for comments from the audience, and individuals making said comments were asked to introduce themselves. Aha! Opportunity knocks! I asked a few questions to the early presenters, so people would know me (I figured this technique out at the BlogHer Conference this summer.) When I introduced myself, I did so in a memorable but not over-the-top way, put my intelligence and humor on display, and...it worked!

For the rest of the conference whenever I introduced myself, people would respond "Oh, you're the blogger!"  Victory!

I was happily surprised by the warmth with which I was received.  The majority of attendees were physical therapists, who generally develop deeper relationships with their patients since they get to spend more time with them than doctors do. Being well-acquainted with the struggles of their patients, and well-aware of the negative impact depressing chat rooms have on patient morale, they could see the need for positive patient-to-patient interaction on the internet. (The doctors I met did too, FYI.)

Some attendees wanted to ask me questions about the patient experience: How do I start a support group? Will patients respond to an invitation from me even though I am not a patient myself? I get so upset when patients fail to comply with my recommendations, how can I build trust and help them help themselves?

One keynote speaker even took it upon himself to introduce me at the Friday night cocktail hour to as many people as he could. "Faith, you should meet so-and-so!" It was great, and I was and still am deeply appreciative to him. I think it speaks well not only of his character but the tone of the society that someone who could have easily overlooked me instead welcomed me and did his best to integrate me into the group.

My mind is on autopilot right now, as it reached full capacity a while ago. It is bubbling with questions, ideas, visions. I learned so much - there were ten presenters on the first day alone - and it will take a while for me to wade through the swirl of thought bubbles and turn them into useful information for you.

In the meanwhile, I am so glad I took this leap. Fun fact: as recently as this past May, I wussed out on going to the Alliance for Pelvic Pain's Conference (which is for patients, and therefore wouldn't have been so scary, right?) At that time I already had the idea for this blog, but was waffling. I wasn't quite ready to share this part of my life with the world. I was scared of being vulnerable and exposed. Getting to a point were I had the guts to attend not only a conference, but one for which I was not "qualified," has shown me how much I have grown in only six months.

You may not think of attending a conference as being a healing agent, but for me it was. More than anything else I have done, attending this conference normalized my experience. Everyone spoke about pelvic pain out in the wide open public! The signs saying "International Pelvic Pain Conference - 4th Floor" or "International Pelvic Pain Conference - Registration" were out alongside the signs directing people to the knitting convention being held in the same hotel. The bathroom chit-chat on breaks breezily used such terms as "vaginal" or "vulvar" or "uterine," regardless of the non-attendees waiting in line alongside us. This group of professionals were more comfortable with communication about pelvic pain than even my old support group, whose members had so many past traumas about their pelvic pain that opening up about it was a challenge. Not these folks. They live and breathe painful pelvises and if they have ever had a shyness or an unwillingness to discuss female anatomy, those days are long gone. 

I was touched by how much the attendees cared about helping their patients get better, and saw that many of my frustrations were theirs as well. They too were upset that most medical professionals don't know about pelvic pain, that their patients often showed up to them in tears after years of failed attempts at getting appropriate care, that insurance wouldn't pay them for the time and attention needed to work with people facing the complexities of chronic pain.

It was comforting to be surrounded by 380 people from a variety of specialties who knew what I was talking about, could empathize, and were invested in making my life better. Everyone there realized that our numbers were small given the immensity of the problem at hand, but knowing that there are wonderful clinicians out there - few in number though they may be - made me hopeful.

Yes, this conference was great. Owning my pelvic pain, instead of detracting from my happiness, has instead added to it. Who knew?

Yay!

Here are some fun photos of Chicago I thought I would share with you:

The skyline with the Lurie Garden at Millenium Park in the foreground.

The edge of Lake Michigan. I love that the two boats on the left belong to the Oakland Park District - I wonder what they are used for?

Another shot of the lake.

I spotted this along South Michigan Ave...Swami Vivekananda spoke at the Parliament of the World's Religions at the Chicago World's Fair in 1893, became a well-known orator in the United States and Europe, and is widely credited with introducing yoga to the West - which is why I know about him, and why I took this photo.

Tables set up for chess players on South Michigan Ave. It was fun wandering through the river of big city life, getting caught up in the flow and then pulled into an eddy like this scene, a point of slowness and concentration alongside the zooming current inches away.

Facebook Announcement

This past Friday, August 22 2014, I did something that was very scary:

I came out of the pelvic pain closet - on Facebook.

Some of you may not think that is such a big deal, seeing as I write a blog about pelvic pain for the whole world to see. But I dragged my feet about writing anything about it on Facebook. Somehow, writing about pelvic pain for strangers is easier than telling the vast circle of family, friends, acquaintances, and random people I took a workshop with once. 

I started using Facebook back when it was only for college students. It was a place to share a lot of things, a club whose select few members you handpicked. Then it opened to the rest of the population, and suddenly another generation - parents - joined the fray. Facebook went from being an extension of campus life to something that you edited, whether the content, the friends list, or both. Personally, I have given up on trying to keep Facebook the tight circle of real-life friends it once was, and have shifted to accepting requests I once would have balked at: people I haven't seen since the third grade, and yes, random people I took a workshop with once.

My list of Facebook friends is therefore an amorphous field comprised of people who see me in so many different ways. Most of them only know me in one context. They have known me since birth, as their niece, someone who will forever be younger and of another generation; they know me as the hazy memory of the girl they sat next to in the third grade; or maybe they know me as my body's movement, as a fellow yogi or dancer. Choosing one way to deliver intimate information across a past with so many pathways to human connection was a daunting task.

Coming out on Facebook doesn't only affect my digital life. Many of my Facebook friends are people who I will actually have to face in real life at some point, perhaps regularly at family get-togethers, or unexpectedly, in line at the grocery store. Whether at work, in a networking group, or across the Thanksgiving table, I am now the Pelvic Pain Lady, the story of my lady bits having been officially ushered into the realm of acceptable, indeed encouraged, topics of conversation. 

In the end for my Facebook post I chose video. I was honest, and direct, and to the point, reminding myself that by showing our vulnerabilities we can help others heal. Yes, there is a slice of me that is completely mortified that my private parts are no longer private. But there is also a part of me that is proud I am instigating the change I wish to see in the world.

So. I did it.

...Now my mom is asking when I will do an email blast.