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The pain that is vulvodynia

VulvodyniaVulvodynia is pain of the vulvar area which is currently described by the  International Society for the Study of Vulvovaginal Disease as “discomfort, most often described as burning pain, occurring in the absence of relevant visible findings or a specific, clinically identifiable, neurologic disorder”.  Meaning, in layman’s terms:  there doesn’t seem to be a specific reason found for it occurring.  Research is ongoing and there are several theories developing, but so far no single or even regular grouping of causes have been identified.

The number of females who experience vulvodynia, depending on the study, has ranged generally from 5-19%.

While it is most often a burning pain, it can also be throbbing, itching, pain during intercourse, irritation or rawness, stinging, and other painful sensations.

Vulvar pain can be localized or at various points.  It can cause entering the vagina or even touching the vulva to range from uncomfortable to unbearable.

Vulvodynia can be short term or chronic.

Due to no known, set origin treatment methods are also widely varied and hit-or-miss in effectiveness.  Some involve physical therapy, psychiatric care and therapy, medication for pain and topical anesthetics, anti-depressants and anti-convulsants to address potential nerve pain, local injections of various medications, dietary changes, clothing and soap changes, hormonal treatments, and more.

Given these facts it’s easy to see how this can interfere with many females’ sexual lives and for some even daily non-sexual activities.

It can be not only physically painful but also emotionally distressing for both the female effected and for any partner(s).

I can speak on vulvodynia’s effects to an extent personally.

At first, there was rare and minor discomfort during sex and nothing that was enough to cause concern.  It was the type of thing one associates with being positioned just wrong or perhaps not well enough lubricated that time.

Then it became slowly more common and intense during any insertions into my vagina… eventually the sensation was that of being burned by acid when anything even slightly entered me.  It stopped any type of sexual encounter of that type between my partner and I and I decided it was necessary to pursue help from a gynecologist.

I was given pelvic examinations a couple of times, by two different doctors, which were excruciating. As each time no irritation or unusual discharge could be found and the STD testing they did each time came out negative, I was told to come back in a few months if I still had pain.  They couldn’t see anything wrong with me, so I was brushed aside so to speak.

On my third visit to the gynecologist, the second one pelvic exam doctor, I had expected more testing or another pelvic.  I was told frankly and directly at a sit-down office meeting that they did not know what was wrong with me and they couldn’t do anything for me.  He then got up to end the appointment.  I stayed seated.

Through pure stubborness on my part he eventually offered to sent me to both a psychiatrist to try and find out if my pain was caused by a mental health issue and to another gynecologist that specialized in vaginal pain.

The psychiatrist referral never came through, but the gynecological one did.  I was given a pain-mapping procedure where the doctor uses a swab and touches various areas of the vulva and vagina to find where exactly the pain is occurring.  Mine was not deeply internal so he chose not to subject me to an internal ultrasound due to the extreme pain any insertions caused.  I was put on an anti-depressant used for nerve pain and assigned a course of 5 weeks of daily lidocaine application, with the plan for physical therapy to be started.  However, I had to move states shortly after and could not follow with this gynecologist further.  He assured me that at that point I would have his files to continue forward with care at my new doctor.

The trip to that specialist helped to such an extent I cannot say emotionally.  With no diagnosis and essentially no treatment prior to him I was at a loss as to why I was experiencing such intense pain, concerned it may be something along the lines of cancer potentially, and I was frustrated with my body and my sexual limitations with my partner.  But now, finally, I had a name for what was wrong, vulvodynia, and a doctor who was completely honest about the facts concerning it but had begun a course of treatment.

Given the word, I was able to better Google.  I found other females experiencing the same and similar pains; I found sites filled with information.  I was no longer completely blind as to what was going on with me.  Still concerned, still morbid worries, but no longer at a complete loss and alone.

Moving states and file-transfer issues have started my treatment from square one again, but thankfully with another gynecologist who is motivated to help me find a cure if possible.  A doctor who has sent me for an external ultrasound to rule out more possible causes and who has expressed full willingness to refer me to a specialist again if the basics he wants to cover don’t find anything.

Thankfully, my ultrasound has come back just fine.

But it has now been twenty-one months, a year and nine, that a part of my body has been only a source of pain with no explanation as to cause, no set and reliable course of treatment known, and has hindered my private and partnered sexual life.  It is frustrating.  It is scary.  It is something awkward to explain to new potential lovers… “No, I can’t have anything involving my vagina. Yes because of pain. No, I don’t know why. Yes, I promise it is not due to infection as I’ve been repeatedly tested”.

If you are female and experience unexplained vulvar pain or are involved with one who does, know you are not alone.  Push for testing to rule out what can be.  Don’t let yourself be set aside medically.  Seek out support groups and information in hard copy and online.

Try to be understanding and accepting of yourself or your partner.  Patience is hard, especially when it comes to such an important part of one’s identity, physical functioning, relationship interactions and how or if the cause will be resolved.

It has a name, many of us experience it, and help can be pursued.  Again, you’re not alone.

 

 

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Articles

Sex Related Podcasts

There are a number of great sexuality related podcasts out there, here are a few of my favorites

Graydancer has been running the Ropecast for many years and doesn’t *just* talk about rope :)

Cunning Minx runs the fantastic Polyamory Weekly “Responsible non-monogamy from a kink-friendly, pansexual point of view”

The Masocast offers “casual conversations with intelligent, funny and all around interesting kinky people

Raven Lightholme runs Freedom of Fetish that shares “sex, relationship, and fetish advice”

The Big Little Podcast which is “an audio program by, about, and for age players of all kinds”

The Erotic Awakening podcast is hosted by Dan & Dawn Williams, Barak & Brat Sheba and Lee Harrington

Categories
Interviews

Sarah Sloane – Community Leader

How long have you been teaching?

I’ve been teaching technically since 2000, at the behest of the members of the club that I was pledging (though I’d done some corporate training prior to that). I started to teach at other local groups, and then offered to present at Black Rose’s big event a year or two later…and I was off and running.

How did you get started in sex/kink education?

I’ve always felt a passion for teaching – starting in college, when my intended major was geared to prep me to teach high school (though that never materialized). Finding the connection between my own personal growth as a sexually aware and responsible adult and the ability to help give other people the opportunities for learning & growing really charged my “calling” to be an educator. In 2004, I started taking that calling very seriously, and put myself out there to events & groups as a skilled educator. Since then I’ve taught over 650 classes to an immense range of people, groups, events, and professional organizations.

Are there any topics that you consider your specialty?

When it comes to a “specialty”, you have to look behind the class descriptions. I have a tremendous range of classes (which I believe makes me an easy fit for a group or event, as I can tackle a wide variety of topics), but one of the core concepts that I talk about in every one of my classes is communication. Learning to build the skills necessary to communicate with our partners is important, whether you’re talking about open relationships, g-spot play, butt sex, or even impact play!

Have you seen any changes in the BDSM community education over the years?

BDSM community education has really grown and stretched in ways that I think are amazing. We’re integrating more concepts from social media and crowdsourcing for opportunities to learn in more hands-on, informal ways, rather than in the traditionally structured manner that most of us are accustomed to. Sadly, some of the result of that is that there are people teaching out there that lack the combination of technical skill and interpersonal communication skills (not to mention the ability to get- and hold – the audience’s attention), and so there is little in the way of discourse on how to gain those skills. I’m trying to change that in small ways, by talking about becoming a sex or kink educator, helping facilitate conversations & workshops on skill building, and other things – but there is still  a long way to go!

You’ve been head of education for a few events, can you talk about what the pro’s and con’s were of those experiences?
When I’ve been the programming director for events, it’s been a joy – and a pain. The class offerings that educators submit range from the super basic to the highly arcane – no event needs 15 basic play classes, and for many events, something that is highly specialized or specific isn’t a good choice. I have seen classes that, based on the description, could not have been done in 90 minutes, and classes that had one good, 30 minute class with too much padding – and neither of those serve the attendees well at all. What I have loved is working with educators who really do focus on what they can bring to the attendees to help them learn & grow; I’ve seen so many people who have been flexible, responsive, professional, and really “got” that they are the key to a successful event, and they make doing the programming side a true joy & pleasure. What really made the events amazing for me is hearing the chatter between classes or after the event on mailing lists or forums that spoke about those perception-changing moments that people have when they’re in classes – when they learn something in a way that really clicks for them, or when they hear an idea that they’d never explored, but was a perfect fit for their next step in growth. The knowledge that all the work that the staff and the educators had done was really yielding benefits for the attendees is really an amazing gift.

Now you work as a manager/education booker at the Pleasure Chest in Chicago, what’s it like to schedule educators in a brick & mortar store?

Scheduling educators for us at The Pleasure Chest is very different than at events. We definitely go through a vetting process with any outside educators that we bring in; we often have conversations with other store managers and owners to try to find great educators, and we have to ensure that the people we bring in are giving education in a way that’s compatible with our own corporate brand – so their point of view, their ability to teach to all genders, orientations, backgrounds, and socio-economic levels is a key part of what we’re looking for. Because we are a retail store, we also have to ensure that our educators bring in a crowd and help them feel great about their experience with us, because that experience will determine whether the attendees shop & recommend us to others. Fortunately, we have a lengthy training process that our own staff go through to become Sex Specialists, so we have the ability to have our educators on premises regularly – and that helps our customers to learn & grow, even outside of normal class times.

Do you have any pet peeves about sex educators?

I have pet peeves about everything – just ask anyone who knows me :) Seriously, though, there are a few things that really turn me off when I see them in educators:

-Overly competitive attitudes – I promise you, there are enough places for educators without having to fight over them. When a presenter touts themselves over others, it creates a situation which isn’t good for any of us. And educators do talk with each other & with the people who book us; if we don’t feel like someone has our backs, we won’t recommend them. Ideally, educators should be able to help each other rise to their greatest abilities, not serve as backs for another person to stand on.

-Big egos – a lot of us to go into events where we teach or play, and constantly hear how awesome we are. Unfortunately, some folks get into teaching because they want the attention or approval of others, and that can end up setting the educator up for a big ego challenge that’s based on surface performance, not true inherent value. Most people go through this on some level or another, but when it’s too prominent, or turns into the educator feeling that they have a license to act in whatever way they want regardless of the rules or of community standards, it can become poisonous.

-Lack of professionalism – It may not be a written contract with a gold seal on it, but when an agreement is made, everyone should do their best to fulfill their end of it. If I agree to come to your group & teach, I also agree to show up on time (or early), treat everyone there in a friendly & professional manner, do my best to educate, clean up after myself, and offer follow-up documentation or assistance as needed.

– Likewise, if your group asks me to come teach, I expect that you’ll communicate what you need from me, honor your compensation agreements, and treat me with respect. And while for some folks, talking about professionalism in the BDSM community education outreach seems anti-community, the reality is that the professional attitude towards education can provide a foundation that leaves everyone – the group, their attendees, and the presenter – feeling really good about the results.

If you’re getting started as an educator, here are a few things I recommend:
-Start out small, and grow. Don’t expect that the 800-person event is going to give you a comp, or even ask you to teach. Offer to lead a discussion at a munch, or teach at a small local group. Do that as much as you can. You’re getting two things – practice, and a resume. And both of those things are what will help you become more successful.

-Practice, practice, practice. The classes that I am best at are the ones that I have done multiple times. Call your friends, and ask them to help you with a dry-run. Write your outline and talk yourself through it a few times. Have mini-conversations about different parts of your class. The more you practice, the more fluid your delivery will be, and the more able you’ll be to handle the questions that take you a little off-topic.

-Be a partner with the group or person that books you. Promote the hell out of your class & the event. Tweet, facebook, fetlife – whatever. Understand that their success and your success are intertwined. Encourage your friends to show up. If you have a great relationship with them, say thank you (a written thank you note is a great way to do that, so they can look at it when they’re not up to their eyeballs in event- or group-running). Going above and beyond the call of duty leaves them wanting to see you again – and leaves them recommending you to others.