Introduction to Melissa Jones: Interview Part 1

I had the immense pleasure of interviewing Melissa Jones of the Sexology Institute and Boutique in San Antonio, Texas last week. A few weeks ago, through the magic of social media, I stumbled across an announcement for a workshop on dealing with painful sex held at her shop. Whaaaa? Intrigued, I looked up her site, was impressed, and arranged to speak with her.

While the Sexology Institute and Boutique opened this past February 2015, Jones has been a sex educator and coach since 2008. A member of the Church of Latter Day Saints, aka a Mormon, she  led summer camps for girls as her kids were growing up. One night after the campers were asleep in their tents, the moms were sitting around the fire and started talking about how unhappy they were with their sex lives. They felt like it was a job, or didn't find it very pleasurable, or were frustrated in their attempts to improve it. 

A lightbulb went off. Jones, who had been raised by parents who portrayed sex in a positive light and were open to discussing it, thoroughly enjoyed the sex life she had with her husband. In her view, sex was a gift with the potential to bring couples closer together; it could be empowering and loving, and she wanted other women to have that. In addition, she was troubled by the negative attitudes towards sex that her children were picking up at school and in the wider community.

She became a Certified Sexologist and started offering private coaching sessions in her San Antonio office in 2008. She also offers sessions for individuals and couples for out-of-towners through Skype. Along with a great team of women, she opened her shop, which also includes an erotic art gallery and workshop and event space, this past winter. It's walking distance from the Alamo should you ever find yourself in San Antonio! While she personally reserves sex for marriage, she realizes that the world is a diverse place and works with men and women of different sexual orientations, partnered, polyamorous, or single. Her goal is to empower men and women to have a healthy sex life.

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Usually at this point in hearing about some awesome sex-positive resource or person, I scan their offerings and notice, hmm, that's great but they don't seem to know anything about v pain. Blerg.

But this is where Jones is different! On her website under coaching services, she specifically notes painful sex as an issue she helps with; and she has had not one but TWO workshops on painful sex, presented by Peggy Francis, DNP (Doctor of Nursing Practice,) within six months of opening her storefront.

Turns out roughly 30% of her clients deal with painful sex. Whaaaa? Thirty percent? Yup, you read that right.

Not only that, Ms Jones has interstitial cystitis and lupus, so she is no stranger to the challenges chronic illness can bring to the bedroom.

Nest week, part 2! Let's learn what this rockin' lady has to teach us about how v pain doesn't have to keep you from a rewarding sexuality.

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Did you know that you can comment anonymously?

Yup! Feel free to start a conversation with your fellow readers in complete privacy. ;)

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!

* * * PS * * *

Did you know that you can comment anonymously?

Yup! Feel free to start a conversation with complete privacy. ;)

Sweden = Awesome

Amazeballs!

I stumbled across this article the other day in the Women section of the Huffington Post. Apparently a sex ed group in Sweden decided to do something about the fact that there is no Swedish word for female masturbation, held a nationwide competition, and recently revealed the winner: "klittra," a combination of the Swedish words for clitoris (klitoris) and glitter (glittra.)

From their spokesperson Kristina Ljungros:

"If we don't have a word in the language, how can we even talk about it?"

Well said, my dear, well said.

The sponsoring organization, the Swedish Association for Sexuality Education, is currently lobbying to get klittra added to the official Swedish dictionary. It's not their first time playing with language - in 2010 they translated a Swedish pamphlet combating misinformation about virginity and the hymen, instead using their newly coined English phrase "vaginal corona." 

I'd love to see a national competition to create new English words not only for female masturbation, but also for female anatomy and experiences, words that celebrate sexuality, the body, and the feminine. Anyone else? Adding it to my to do list...

“I know someone who had that."

For many years after my diagnosis, I didn't speak of my v pain to anyone other than a few close friends and my sweetheart. But when I started teaching yoga a few years ago, I wanted to be honest about what drew me to the practice. In the yoga world people often chit-chat about what brought them to the mat, and while I didn't want to be detailed in my honesty, I didn't want to lie, either.

At first I would say that I came to yoga because of a variety of chronic illnesses, but apparently that was too vague as people would always press for more. If I mentioned the pain disorder, the person conversing with me would then say "Oh, fibromyalgia?" (always fibromyalgia) at which point I would reply that no, it wasn't. Pause. Unwilling to say "vulvar pain" or explain the term "vulvodynia," I would simply say "I have a pelvic pain disorder."

At the mention of the word "pelvic" men would get uncomfortable and quickly remove themselves from the conversation, and sometimes that would happen with women too. But often - if it was a woman - she would lower her voice and say:

"I know someone who had that."

Had WHAT? Do you recall that the pelvis includes many different organs and body parts, any of which could experience pain? Some would leave the conversation at that, but often she'd talk about how horrible it had been for this person she knew. I'd try to look sympathetic and nod, having no idea if we were talking about endometriosis, interstitial cystitis, lichen sclerosis, vulvodynia, or something I'd never heard of. 

I can't pin this peculiarity to the yoga world either, as over the years these conversations took place in other contexts as well.

In all of these these situations I clearly had boundaries about how detailed I was willing to be about my health history, so I have never thought it fair to call anyone out and actually ask them what they meant. But it never ceases to amaze me how many women out there will go on about something - furtively - when it is not clear if both people are discussing the same thing.

Like last week's post, these veiled conversations have highlighted the fact that we won't make any progress without first learning how to communicate about the pelvis.

The other odd thing is that the phrase is always the same - I know someone who had that. Let's break it apart, shall we?

1.) Part One: "I know someone..." No one has ever admitted me to me right then and there that they themselves struggle with chronic pelvic pain. The closest I've gotten to that is a woman who said she would like to meet with me to talk more about this topic - we did meet, and in that safe space she did say that she had been having some struggles and asked me about my experience.

I'm not sure if women are simply more willing to discuss something sensitive with the safety of distance, while women struggling with these health issues themselves remain silent. Or perhaps "I know someone" sometimes means "I know someone - me?" I think usually the situation is the former, but I have sometimes wondered.

2.) Part Two: "...who had..."  For some reason, this person my conversation partner knows is apparently beyond her pelvic pain - it's in the past. Again, is it because sensitive topics are easier to discuss with distance, not only in terms of who it is happening to, but at what point in time? 

Statistically, it seems very unlikely to me that ONLY women who know women who had "that" in the past should ever meet me, and never the women suffering themselves, or the friends of women suffering currently.

Or is that some of these sufferers are still struggling, but its just easier for the friend to communicate about if she pretends its in the past? Maybe my conversation partners don't want to stigmatize their friends, even anonymously, by advertising her "broken" lady parts? Or is that the friend heard about it in the past and is assuming the sufferer has recovered, when in fact perhaps the sufferer has just not talked about it for a while? Given how persistent many pelvic pain disorders are, and the lack of good treatment options for many of them, I find it hard to believe that 100% of the cases women tell me about are neatly and tidily taken care of and in the past permanently.

3.) Part Three: "...that." Ah yes, "that." Which again means what??? When it comes to pelvic pain, intelligent and otherwise articulate women are reduced to communicating via pronouns without bothering to specify what that pronoun is referring to. 

No one has ever said to me "I know someone who is struggling with a pelvic pain disorder as well." No, no, this person always had "that" as if "pelvic" as an adjective only described one body part, as opposed to a region of the body with many different parts and functions contained within it.

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These conversations have been very educational, in that I have learned women do not have the tools to talk articulately about issues of the pelvis.

Also frustrating, in that they don't really come to anything. The woman I am speaking with generally tells me quickly how horrible it was for her friend, warmly wishes me good luck, and then runs for the door. 

As I write this, I think I need to re-think my policy of responding with sympathetic nods. How can I shift the conversation while still keeping my conversation partner feeling safe enough to continue the discussion?

"Oh, I'm sorry to hear that someone you know is suffering - we may not have the same issue, however, as there are dozens of pelvic pain disorders affecting all of the different systems in the pelvis. I'm always looking for resources for my own health as well as to refer to others, so I would love to get your contact information - would you be comfortable asking your friend if she would be willing to talk to me and exchange resources?"

or perhaps

"You know, it's funny, I get that response a lot even though there are dozens of different pelvic pain disorders. Many women suffer from one or more of them, so I am always looking for more resources for myself and others - do you think your friend would be willing to talk with me? Maybe she and I can help each other out."

The next time this situation arises I will try and remember to use one of these responses instead. It would be great to be able to build on these points of contact - get a referral, meet someone new, whatever. Maybe by providing a woman with an experience of an articulate but still discreet and respectful conversation, she will have an easier time talking about pelvic pain in the future.

I'll let you know how it goes. In the meanwhile, does this happen to anyone else?

Say It

Victory! This past weekend I was totally validated for my Facebook post of last August, in which I announced the birth of this blog and thus the existence of my own history of v pain to what felt like an uncomfortably large sum of people.

At the time it made me feel soooo vulnerable, but I now have evidence that putting myself in that super-uncomfortable position paid off.

I was at my 10 year college reunion this past weekend, and I ran into an old friend of mine. He told me that he has been trying to refer a friend to this blog (which he heard about on Facebook, wink wink), but she's so upset about her v pain that she hasn't been able to bring herself to check us out. 

Yes, it sucks that she is struggling, but on the plus side she knows where to find us if she ever wants to reach out, AND how amazing is it that she has a friend who is has already heard of v pain, is comfortable talking about it, and is cheering her quest to get better (she has found a PT who is helping!)?

The fact that my Facebook post, as vulnerable as it made me feel, could facilitate someone I have never met having a supportive friend walk beside her during a miserable time made me feel so good. (It does help that Josh is freakin' amazing already.)

At the reunion I also got a chance to chat with a biology professor conducting research on vulvodynia and the immune system with funding from the NVA (again, I was referred to her by someone who had seen my Facebook post.) She said that her students are always nervous when they start to work in her lab, but after a while they would get the hang of it: terms like "vulvodynia" and "vulvar pain" are soon no big deal.

These two experiences reminded me of the (freeing) power of communication and the  (oppressive) power of silence.

Our future potential progress on finding treatment and care for v pain depends completely on our ability to communicate about it.

Staying silent is understandable. We don't have pre-existing ways of discussing this topic comfortably and we have major cultural baggage around it and it's many cousins. But if we stay silent, we will never build the communication structures we need and life will continue to suck for us and millions of other women. 

So...

I challenge you to push your boundaries and communicate about v pain in some way that is new to you. If it's too scary to think of telling someone else about v pain, start by communicating with yourself. Here are some ideas to get you started:

• Draw a picture.
• Make a self-portrait. 
• Write a poem.
• Make a movie poster for a documentary about v pain that could happen some day.
• Make a list of all the women you know who have been affected by v pain.
• Write about what you wish your medical care experience was like.
• You could even post about it on Facebook ;)

Over time you can build up to talking with other people. If you are not ready to tell them your personal story, you can always share information about v pain itself - how it is an important women's health topic that affects many and is being brushed under the rug, etc.

And if you still think all of that is too scary, I ask you this: is it scarier to talk about v pain, or to live in a world where no one talks about v pain and millions of women and their loved ones suffer as a result?

I mean really...

So. Happy talking and art-making and communicating! It may seem small, but what you are doing is actually quite bad-ass. Who knows who you may help in the future...?