“Are you pain-free now? "

"Are you pain-free now?"

I recently got this question from a reader, who pointed out that it wasn't clear from my blog. Good question, I thought. I should clarify that!

Why the hesitation, you may wonder? Isn't that a simple yes or no answer?

Well, kinda. The simple answer is "Yes" but I have so much hesitation about declaring it. This question made me realize that I fear saying "Yes, I'm pain-free," because if I then ever had a flare-up, people would think I was dishonest or fraudulent.

On the other hand, if I boldly state my success and do remain healthy, then people may develop some ridiculously high expectation of me. I fear saying "I'm pain-free" is the equivalent of saying "I'm perfect for forever and ever and shall never have a health problem again because I've figured it all out!" - and well, I am human. While I acknowledge that I put a ton of work into my recovery and it paid off, life is still a huge mystery, and there is so much I don't understand about how human bodies work.

So, let me explain the gray area between "yes" and "no."

One of the things I have learned from chronic health issues is that they ebb and flow - like, oh, EVERYTHING in life. There is HUGE, ginormous misunderstanding about this in our society, which leads to unneccessary stigma - that we are somehow in one bin (healthy) or the other (unhealthy). People in the "healthy" bin supposedly live happy, productive lives, while those in the "unhealthy" bin wither in obscurity (or something like that.)

But life is not like that. Some people seem "healthy" on the surface but are struggling to manage anxiety, depression, digestive problems, or whatever behind the scenes. Many people with long-term health challenges lead joyful, productive lives both personally and professionally. Also, even robust physically "healthy" folk are still human and face other challenges. We all have ups and downs of some kind or another. We all have strengths and weaknesses, blind spots, and beautiful gifts to share.

So, if you want more detail, and for me to answer the question already, here is my story, using the commonly understood pain experience of migraines/headaches as an analogy for v pain:

From 2004 - 2007 I had 365 migraines a year. It was hard to function or be happy then, although I still dragged myself to school and then work and back home again.

After three years I finally found some help. The migraines went away for a few months, but then I experienced some very stressful life events, and they came back. I then managed to find some other, new help, and learned and grew and changed, and my daily migraines dissipated. They became just plain old headaches, and then only intermittent headaches.

Now I have headaches a few times a year. They are usually pretty mild, the kind I don't even need Tylenol for, but on the rare occasion they warrant a Tylenol, I'll take it.

I think going from 365 debilitating migraines per year to the occasional mild headache is pretty impressive on the healing-from-chronic-pain scale! It is a fan-frickin'-tastic, raging success story.

As far as translating that analogy back to the v pain experience, in my "migraine" days I was in constant pain that would be exacerbated by even a slight touch, like wearing properly-sized underwear. All of my pants were two sizes too big, and I sought out jobs that allowed me to stand, as sitting was excruciating. Intercourse was a no-go (although I still had consistent pleasurable sex thanks to my clitoris. Oh how I love her!)

Now, with only the occasional headache, I live a normal life, with pants that fit - even tight jeans. I never worry about "How long will this activity require me to sit?" and enjoy intercourse and sex in general with such enthusiasm that my husband worries the neighbors will hear. 

Functionally, I am a totally different person. 

Another huge shift in my experience is that I no longer see pain as the enemy. It only crops up when my body is like, "Hey lady, I need a little adjustment here." It's my body's way of telling me that I need to change something, often in my relationships with myself or the outside world. I think the reason I so rarely need "Tylenol" these days (aka topical estrogen or some other kind of intervention) is because I have become so good at reading the messages of my body and responding in a loving way.

For instance, I get actual headaches when I am dehydrated, overdoing it, sleep-deprived, or stressed out. I get shoulder tension, forearm tension, and wrist pain when I am too long at the computer. Yes, these cues are annoying, but on the other hand if I take care of myself  - stay hydrated, get sleep, take breaks from the computer - the physical cues to "adjust please" don't happen because there's no need for them. That's pretty reasonable, right?

It's the same with v pain. I feel little warning twinges when my boundaries are being disrespected or I feel really angry but am trying to hold it in. Since I know this about myself, the slightest hint of pelvic floor discomfort helps me stop, take a moment to figure where I am being violated, and then adjust course. Presto, pain averted.

Am I guaranteed to be pain-free every moment of every day, for forever and ever? No. Have I become the absolute master of my body and can fix everything about it exactly the way I want, every time? No. Have I achieved some mythical state of perfection, and no longer need to keep growing and learning? No. Am I still a work in progress? Yes. 

Am I pain-free enough to live the life I want? Yes. 

* * *

I share this level of detail with you all because when I first started having pain, I couldn't find a single role model! I wanted to hear a hopeful story, but there were none to be found.

So now you have it. I have become the (flawed, totally human) role model I wanted, ta da! Even if your pain is debilitating and you are having 365 "migraines" a year,

getting better is possible.

I'm proof.

I'm here. I'm real. I climbed this mountain and you can too.

HUGS!

~ Faith ~

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.

Good Times

Hey all! Last week's posts were inspired by a trip to Florida with my in-laws. This week I thought I would share some images from the trip and thoughts I had, for funsies....

Here's one of the postcards I sent out:

We started out in Orlando cuz the in-laws had to hit up the theme parks and the outlets. Theme parks and shopping? This is exactly the kind of trip I would  never take. But as my sister says, we have family so we hang out with people we never would otherwise, so off I went, determined to go with the flow and have tons of fun.

And gosh darn it I did. 

I screamed on the roller coasters, stared in awe at penguins and dolphins, and went on every ride at the water park. I made up fairytales featuring my niece and her favorite Disney princess, Cinderella, as the heroines. I ate my weight in candy, and went along to the outlets and happily got some great finds.

It was really great having an opportunity to be with my in-laws in an energetic and happy, pain-free state, something I have (almost) never experienced.  This trip was even more fun than my first trip with them - before I developed vulvodynia - because I have grown so much and become a much stronger, more relaxed person. 

I share this to let you know that there is light at the end of the tunnel, that you too can heal your body, mind, and soul. Pelvic pain won't necessarily be around forever. Keep truckin', darling.

Good things await!

Welcome to YatraYoni

Welcome to the YatraYoni blog! I'm so glad you're here.

On this blog you'll find hope and resources for what can be a very difficult and scary time. When I was first diagnosed with vulvodynia, one of many varieties of chronic pelvic pain, the only information I could find on the internet was from some abandoned blogs written by women venting about how miserable and small their lives had become. 

That was super depressing.

It was also ten years ago. Though we still have a long way to go in research and education, there are more resources now, and perhaps just as important, there are more ways for patients to connect. We have fun tools like Twitter, Facebook, and yes, blogs, where we can tell our stories and make our voices heard, to other patients, healthcare providers, and the general public. Where there used to be darkness, there are sparks, hints that things can get better. Together, we can take those sparks and turn them into a raging fire.

Yes, pelvic pain sucks. It hurts, and its scary, and its frustrating. But you CAN get better, and we are here to show you the way!