Minor decisions – WellSphere

08/26/2009 at 7:46 pm | Posted in Uncategorized | 1 Comment
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I have been invited to join WellSphere.

Should I do it? Y/N

I’m not fully understanding the pros & cons of joining. I’ve been thinking about it. I am probably overthinking things again.

Some of the other vulvar pain/”Crotch bloggers” (I hope you don’t mind me using that term – you can use it when you refer to me if you want) are members of Wellsphere – how is that all working out for you?

Feedback is appreciated if you have any.

Old books added to the queue

08/25/2009 at 8:32 pm | Posted in Uncategorized | 3 Comments
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I have suddenly found myself in possession of several used Olde Timey books on human sexuality and marriage. Some of these are seriously old – the Margaret Sanger book was published in 1926 although this copy is dated 1940. The “Hygine of Marriage” book is dated 1932. There’s another dated 1957, and others from the 1980s.

augustnewbooks

The books that do not have jackets are – “BioPotency – a Guide to Sexual Success” (Looks to be something about erectile dysfunction exclusively,) “Happiness in Marriage” (by Margaret Sanger,)”The Hygiene of Marriage” (old & kind of creepy), and “Men Who Hate Women and the Women Who Love Them” (I seem to vaguely recall hearing something about this when it first came out when I was a child… something about the grown-ups were talking about it…)

Do not ask me how I came in possession of these books, as I am still somewhat distraught over the circumstances myself. I am further disturbed by who had these books, and what my relationship with this person(s) means. I am not yet ready to disclose the how and who and what it means.

Do not ask me what I intend to do with the books either since, I don’t know. I have newer books on sexuality. There’s been a lot of research and a lot of cultural shifts in ideas since those Olde Timey days. I know that the books are probably outdated, or at least, I should certainly hope so. A few of them use old, offensive terminology. In at least one of them, the word “Frigid” is still used in all seriousness, and others predate the DSM-IV revision, which removed homosexuality as a psychological disorder…

I don’t know if I’m going to read them, since I don’t even know if I’m going to be able to stomach some of them.

::Shudders:: I just read a passage on homosexuality from that “Hygiene of Marriage” book. It’s pretty disturbing. Oh my god this book was in print once. Oh my god how many people read this?

I glanced through the indexes. The Masters & Johnson book is the most “Progressive,” in the sense that, its copyright date is sometime in the 1980s, and it contains the term “Vaginismus” and “dyspareunia” (painful sex.)

The people I got these books from… Were you looking for answers just like me? You never had a computer. You wouldn’t have known what to do with one, even if you had. You couldn’t have found the answer you were looking for online, because you didn’t know where online was. Why did you have all these books? Why these titles?

An old list of doctors fell out of one of the books. Were you looking for a doctor equipped to handle sexual difficulties? You were looking for help, weren’t you, previous book owners.

This is the first time in my life I feel any sort of emotional connection to you.

Why didn’t you tell me? I could have helped you. You could have helped me!

Why didn’t you tell me?

Now it’s too late & I’ll never know.

Interesting posts, weekend of 8/23

08/23/2009 at 3:24 pm | Posted in Uncategorized | Leave a comment
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It’s that time again. Posts I found particularly interesting over the last week.  Share links if you got ‘em. I’m sure there’s more…

The making of a disease: female sexual dysfunction – not a blog post and not new, but new to me. Backlash against the backlash against “Creating” female sexual dysfunction. I should not feel grateful when I see professionals actually acknowledging that there are real, biological changes (and accidents) that can lead FSD. But I do because such sentiment is rare and overlooked. Especially lines like this:

The common error of equating self reported sexual problems with medically diagnosable disorder is well recognised.

However, to focus only on this and neglect the need for research into aetiology, pathogenesis, and treatment of women’s sexual dysfunction from disease, medical, and surgical interventions, is unfortunate. To date, neither the major neurotransmitter involved in vaginal congestion nor the autonomic innervation of the vulval structures has been established. Industry funding facilitates research of interrupted sexual responses from chemotherapy, pelvic surgery, neurological disease, premature menopause, and drug treatment, as well as healthy sexual physiology.

YES.

Nipple and Clitoral Stimulation and Sex During Labor – A bit strange, but kind of interesting.

Judge Reportedly Questioned Whether Woman Was Raped Because She Was “On Top” - appalling; Marcella picks apart everything that is wrong with this situation.

Phil Bronstein on Good Vibrations: not for women anymore? – I vaguely recall hearing something about GV’s sale a few years ago; Violet Blue (in reference to a Phil Bronstein article) talks about some subsequent, and unfortunate, changes since then. See also friday nibbles – VB’s link roundup with commentary.

In defence of feminists’ weddings – Another case where I should not have to feel grateful for hearing an opposing viewpoint, but I do, especially since Snowdrop Explodes does a good job presenting another side.

This is how the world ends – Grim outlook on global warming.

Eve’s Bible – because I am one of those people who “wanted to read the Bible, but…'”

13 years ago – Regina Lynn on her personal history with sex & the internet. Kind of reminds me of Audacia Ray’s Naked on the Internet book. Man, and to think, I’ve been on the internet for 11 years now…

Twisty Faster Shares Definition of “Porn” with Anthony Comstock! Film at 11. – Holly critiques everything wrong with TF’s critique of a … DeviantArt photographer. See also Part 2, TWIFI, The Inevitable Sequel: Comments!

Colbert Reacts to Archie’s Comic Proposal – Video clip worth viewing.

How to explain the public option for healthcare reform. Really. – Delivers what it promises.

Goverment Health Sources on Twitter, Including Women’s Health – something to add to your “Follow” thing if you use that them thar Twitter service.

Saturday: movies, meds, more – including, among other things, the lines,
I should back up and say, this is after my doctor’s appt. where I did not get an EKG, because the nurse informed that “last year was a good year” (I had an EKG last year), whereas this year the insurance companies are “being weird” and some of them have “decided not to pay for it,” and they (the doctor’s office) doesn’t know if the insurance company will or won’t pay for the EKG until after they file the claim, and if the insurance won’t pay it, they have to bill the patient. So she asked if I wanted the EKG and I said no – taking a gamble that because it was fine last year, no hidden problems have crept up since then. But this is just a perfect example of the big fucking problem in this country. I mean, okay, first, if you don’t have coverage, you’re just screwed – and don’t I know that all too well. Then, if you do have coverage, an insurance company gets to decide which procedures and medications you should have. Your decision on how to manage your health is based on if you can afford it or not, which is so fucking perverse that I hate even typing it. So, how many people are skipping the EKG and then they’ll have a heart attack and then the insurance will cover only 50% of their ER visit because the hospital was “out of network,” and on and on like that. The other perverse thing is, once you’re given a death sentence, Medicare will pay for pretty much everything hospice-related (as happened w/ my dad). They can’t be arsed for preventative care or maintenance medication, but if you’re about to die, well, they’ll help with that, they’ll pretend to care.
YES.

Ask Professor Foxy: How Can I Be Sexually Active with HPV? – Prof. Foxy addresses ways to talk to your sex partner about transmission of STIs. This sounds like something that could have multiple applications.

On swallowing shit – why bootstraps logic doesn’t work.

The Perineum, Privacy and Normal Birth by Evelyn Ojeda-Fox – mostly I like the picture that says “I <3 MY PERINEUM,” but besides that it talks about how pressure to perform during childbirth can hinder the birthing process, and damage the perineum (which I hope to avoid if/when that time comes.)

Still struggling with sexual fear

08/21/2009 at 11:41 pm | Posted in Uncategorized | 3 Comments
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A few weeks ago there was a post over at Renegade Evolution, a response to something feminist blogger Heart had said about heterosexual sex. Essentially Heart said something to the extent of, women are threatened by sex with men. It’s never truly consensual.

Heart said, “Women are *always* vulnerable in sexual encounters with men. Every single time. All het sex is threatening to some degree to women”

It’s a pretty broad generalization, and precisely because of its breadth, it fails to account for a large chunk sexually active women who feel no threat, and maybe even enjoy heterosexual sex. So Ren posted a response…

Unfortunately, Ren’s response post degenerated into victim blaming and bootstraps logic in the comments, to the point where Ren closed the discussion. Rather than address Heart directly, Ren addressed the women who express these feelings of sexual vulnerability. I’ve had some time to think about what she said it still doesn’t sit well with me.

Ren said,

You know what? I feel sorry for any woman who has that attitude. For whatever reasons, whether it be abuse at the hands of a man (or men), or how she was raised, or whatever. I can’t be angry at that kind of fear…no room for anger at that kind of fear. I mean, I look around and I read all this stuff how women just “come up” feeling inferior, to know that they are second best, what that spawns…and you know, it makes me want to slap the shit out of some peoples parents, teachers, extended families, whatever. I want to scream at them “What the hell is wrong with you??” But I don’t want to scream at people who have that kind of fear. In fact, it makes me sad. Very much so.

And then there’s me.
Someone who has experienced some type of sexual fear.
Enough for it to interfere with my sex life.

I don’t want your pity. I don’t want your sorrow, as I bear enough of it on my own. Do not add to my pile, as your pity just adds more stigma & social  pressure to perform “Correctly.” I’ve let down yet another person for failing to live up to arbitrary sexual standards.

“I’m not mad. I’m just disappointed.”

Pity doesn’t carry me far. I want your fearlessness. I want your respect. I want your understanding.

I’d never, as a het gal, want to feel that damn powerless when it comes to sex. Here is one woman who does not feel that fear every time…hell, hardly any time at all…if any. And I thank whatever powers that be for that…especially today after reading that statement. I do not want that kind of fear. I don’t think I could deal with it.

I don’t want that fear either, yet it’s there. I have learned it and I don’t know if I’m ever going to completely un-learn it. I think on some level, it will always be there, lurking just under the surface.

Yet somehow, I’m dealing with it, in my chosen manner.
And I’m still standing.

I don’t want to deal with it; I want to be sexually pain-free and carefree, relaxed, assured, bold. I’m not.

Yet still, here I stand, even as I acknowledge having sexual fear.

There’s no single person or event for me to blame for my dysfunction & sexual anxiety. I do not have a history of sexual abuse. My health history is too jumbled to pick out any single variable as THE definitive cause. While I’m still interested in learning the causes for vulvodynia, vaginismus, and their ilk, I do not blame anyone or anything for my case.

Who are you going to “Slap the shit out of” about this hot mess I find myself in?
Who is there to correct?

No one “Did” anything to me to cause the pelvic & sexual pain disorders to develop. It just kind of happened. My partner, family and friends were all (and remain) supportive. The pain & injuries I sustained during sex with my partner were unforeseeable accidents (especially the pain that happened after we took proactive steps to prevent it from happening again.) I cannot see a direct link between my sex-negative sex ed teachers and biological changes on a cellular level in my vulva. As far as I’m concerned, I did everything exactly the way I was supposed to.
It still happened.

I’ve come a long way from where I was during those peak pain days. I can enjoy non-sexual activities that nonetheless still employ my pelvis. I can usually sit comfortably for long periods of time. Following treatments, I’m getting to a point where inserting things into my vagina is starting to feel good in and of itself. Slowly but surely, my body is beginning to learn sexual pleasure, and un-learn fear & tension.

So we’re getting there. It’s a slow and bumpy ride, and there are times when I backtrack. But I see how far I’ve come already. I’m going somewhere.

But the kind of fearlessness Ren and others enjoy when engaged in sexual activity remains the elusive carrot on a stick. How are you people doing that?

…I really am still vulnerable during sex.
At least, a little bit.
I’m reluctant to admit it, since I don’t want to feed Heart or stereotypes about women in general. Not everyone feels the way I do. This is all on me.
But I can’t deny it – the feelings of vulnerability & anxiety, it’s there.

I fight against negative attitudes toward sex that I find myself mired in and acutely aware of. Yet despite US culture’s mixed feelings about sex, it seems like nearly everyone in the media and online is nonetheless having sex, especially intercourse. How can I possibly measure up? Then there’s the whole virgin/whore dichotomy to overcome, questions of how to give enthusiastic consent to sex, what kinds of sex I can safely & comfortably engage in, have I thoroughly examined my thoughts and desires, where they come from and what is inherently problematic with them etc etc… It goes on. It’s complicated, often needlessly so. It’s enough to make my head hurt and my vagina clamp shut. So many things to worry about.

When it comes to sex, physically and emotionally, I remember the pain and fear. It only took a handful of consistent “Failures” to associate intercourse specifically with fear & pain – and unfortunately, that fear & pain just went on and on long after the actual event. The vulvovaginal discomfort remained for days – weeks – months, prompting multiple doctor visits. The discomfort ate away at my patience & mental health. There just seemed to be no end in sight.
And to think I felt ~mostly fine before attempting intercourse… sure there were some little warning signs here & there but how would I have even recognized them for what they were?

My body may be slowly lowering its defenses, but they’re not completely down yet. Physically, my body is still holding onto tension in the pelvic floor, perhaps in an attempt to defend itself. It’s going to take time and training for my body to learn that there (hopefully) isn’t much left to be afraid of.

Emotionally, I still fight against feelings of sexual inadequacy. How can I possibly measure up to competition? Should I even be in the dating pool? What does it mean when I do not meet rigid requirements for a satisfactory sex partner? What does it mean when I can’t pass rigid requirements for being a sexual being alone, in and of myself? What does it even say about me that I continue to pursue an active sex life, even though it will not be a completely fearless one?

On some level, I know, I will always have to fight that little nagging “What if?” voice in the back of my head.

“What if I can’t perform? What if we can’t get it in? What if I develop a post-sex infection? What if the infection wipes me out? What if I reset back to zero?”

“What if it hurts?”
“He’s bigger than me…”

The fear remains. It’s still there.

It’s there when I am safe & alone in my room, lying comfortably on the floor, maybe even aroused – yet my right hand holding the dilator still quivers, and my heart beats faster as I get ready to start the dilator exercises.

It’s there when it takes several minutes of additional coaxing to relax the vaginal muscles enough to allow the dilator entry – and even then, only slowly. I won’t be able to handle the biggest one that day.

It’s there when I’m at the gynecologist, and although I need to “Scoot down to the edge of the table,” I instead recoil & draw my pelvis away from strange hands and devices.

It’s there when my partner gently places his hand on my visibly shaking leg when I know he is about to go down on me.

It’s there when there is still some muscle resistance just before I push him inside of me.

How do I turn this residual fear off?
Do I even need to?

These fears don’t usually interfere with me nonetheless having a good time or making it through the day.
Sometimes though, the fear wins.
Sometimes I wind up not going through with some sexual activity I originally set out to do. Sometimes the anxiety is just too much and it’s just not happening at that moment. So my partner and I instead change course and explore something else.

I mean, I don’t want to feel powerless either – that is why I speak up about using such de-powering language with regards to women’s sexuality. I can’t be told that I’m just a fuck hole. I can’t listen to messages that say I don’t measure up but oh if I would just do this thing or that thing to improve my looks or my virility then maybe I could please my man. I have to not read between the lines. I have to block out reinforcement that I’m just damaged goods.
I can’t listen to this shit, I have to tune it out.

So, I come away feeling like, I’m still not doing it right. I’m still not living up to outside arbitrary standards of sex & sexuality.
Because, despite all my best efforts, there is still, on some level, a little fear there.

Interesting posts, weekend of 8/16

08/16/2009 at 8:26 pm | Posted in Uncategorized | Leave a comment
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It’s that time again. Posts I found particularly interesting for one reason or another. This is a pretty big round up this week; lots of blogging going on. Share links if you got ‘em.

Why ignore misogyny? (Because it hurts less.) – More on the Sodini murders and the way the media (and those who make it up) responded to it.

I’ll have the rainbow sherbert, please – The sound of an ice cream truck is without a doubt the best sound in the universe, to me. If I saw this truck driving down my street I’d have to take pictures. Delivers what it promises.

Epic battle of Nice Guys® vs. common sense at Penny Arcade – I like this web comic but I gota tell you, that conversation in question seemed kind of… weird to me too. I couldn’t tell if the writers were writing in-character or not (I’m hoping it was in-character…)
There was also a follow up, Penny Arcade update.

since the nation is abuzz with health care talks, I think I’ll join in – a post from another vulvar pain blogger discussing the double standard for men & women who seek permanent birth control for one whatever reason. The reason may not necessarily be primarily for birth control, that’s merely incidental to maintaining or improving overall health.

On a somewhat related note, Actually, we already -have- “death panels.” – Putting up with shit from insurance companies when attempting to get proper care. I’m familiar with this phenomenon.

Cosmocking: September ’09 – I like these posts.

Harrison Ford: Aggrieved Patriarch – lol I just watched Air Force One today.

Sex Radical is a Dirty Word – lots of discussion brewing about an anti-sex work group in Rhode Island.

The people and their cultures: POC and the movies – very comprehensive post detailing whitewashing and racism in film.

What is “Natural sexuality” anyway?

08/14/2009 at 7:10 pm | Posted in Uncategorized | 6 Comments
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I’ve been struggling with an idea I’ve run into a couple of times. Usually I see it mentioned online, but sometimes I’ll hear about it in the media or during a face to face encounter with a close friend… The idea is that of “Natural sexuality.”

It sounds like something that should be intuitive. It’s two very simple words, put together. Something that comes from nature, and nature is good. Something about sex, and sex is good. I feel like should automatically know what natural sexuality is.

But I really don’t know.

I’ve seen natural sexuality mentioned a few times before. I’ve seen well-meaning messages of encouragement online that say we are all naturally sexual creatures. (What if you’re asexual?) A few months ago on another blog, there was an analysis about an e-zine that questions whether kink & BDSM activities are natural or whether they are a symptom internalized oppression & abuse. More recently a comment on Renegade Evolution’s blog addressed a tangent about natural sexuality. I’m struggling with the idea independently, although it turns out that Dr. Teifer, whom for the most part I don’t like and don’t trust, may have beaten me to the question by writing a whole book about it.

And I still don’t get it.

Natural sexuality, what does that even mean?

Is it heterosexual intercourse for procreation? Is it something that forms in a vacuum, and is only tainted by outside influence? Does being naturally sexual mean being driven by instinct? Is it something you just know how to do? Is it eros, a latent drive to act as a sexual creature? If it is a drive, then what do you do when you feel it? What is the natural way of expressing sexual desire? I didn’t automatically know how to express my sexuality. I’m sure much of it has been shaped by the media and teen girl magazines.

Like, I really need someone to sit down and explain to me exactly what natural sexuality looks like. It sounds like it should be so easy, but for me, I struggle with the idea. Am I over complicating things? Am I, still, somehow, doin’ it wrong? Who is to say what I’m doing wrong?

Because so far very few things I have done sexually have come naturally.

I still feel like I have no idea what I’m doing. I’m still exploring & testing my limits. I’m not sure exactly what I’m “Supposed” to be doing,  since I’m getting mixed messages from different sources. Depending on who I’m listening to, certain activities like BDSM mentioned above are either acceptable as healthy sexual outlets to explore, or a sign of major psychological distress & dangerous interpersonal power imbalances and I need to stop what I’m doing and examine my desires and it goes on.

I’m whie, cis, heterosexual, and monogamous. If I was anything but, I’d also have to deal with additional questions, pressure & leers from a big chunk of my surrounding culture.

In my own heart & mind, I have an idea of what I want to do sexually & what direction I’m headed in. The path I’m on is still relatively unexplored, but I think I can carve it out. And maybe enjoy the sights & sensations along the way.

But is what I’m doing “Natural?” Expressing my sexuality sure didn’t come easily, that’s for sure. And what with the pelvic problems, I’ve got some physical limitations built in, preventing me from fully exploring & expressing my sexuality.

When I started doing what I *thought* I was supposed to be able to do by default – enjoy PIV sex – it didn’t work out so well. Like, wow, this is really awkward & painful. I think I may be having a serious problem here. Why does it look so simple on TV & sound so simple when other people talk about it?

I felt pain when inserting anything into my vagina – fingers, tampon, dildo, speculum, or my partner’s penis. It has been my understanding that those activities aren’t supposed to hurt.

The natural remedies alone didn’t make a satisfactory improvement in the pain levels, so I wound up turning to modern medicine for assistance. I even took the drastic step of vulvovaginal surgery to make sex (among other things) more comfortable. Well now there’s something you don’t see happen in nature. No, turning to big pharma, undergoing vulvar surgery – these are paths I’m more used to seeing condemned over and over again. Sometimes I even see the people who go down those paths be worthy of pestering and condemnation. (We’re not really, of course, but I rarely see authors of anti-medicine, anti-surgery writings to treat those who’ve tried such treatments as thoughtful, respectable persons.)

Even now, I use a lot of man-made, artificial tools – dilators, vibrators, condoms, lubricant. (I suppose we could make an argument that I can purchase Green sex toys, which would technically be closer to nature… yet still, someone has to put these things together.)

I have to think about what I want to do sexually. I have to learn about it. I have to read about it, be inspired, come up with ideas, then get instructions on how-to execute sex. I have to construct it out of my surroundings. I have to spend time and some money on it.
I mean, hell, I have to train my pelvic floor muscles to relax – left to their own devices, my pelvic floor muscles’ “Natural” state is one of tension.

In seeking out assistance, and cobbling together my own ways of expressing sexuality, am I moving too far away from what should come naturally? Am I corrupting myself by wanting – and taking – more? Is my growing interest in kink and sensuality unnatural and therefore bad, sine I cultivated that interest only after running into sexual pain? (Does that make me a poseur?) Have I lost part of my humanity & become some kind of cyborg by having my body physically altered under the knife?

If natural sexuality is something with surprisingly rigid rules and strict guidelines , then it is something I will inevitably fail at. There are certain things I can’t do, and other odd things I’d be really good at.

I don’t know where this leaves me with regards to sex being a natural part of life.

Interesting posts, week of 8/8/09

08/11/2009 at 11:08 pm | Posted in Uncategorized | 1 Comment
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A little late this week. Posts I found particularly interesting over the last week. Share links if you got ‘em.

Gunman Murders Gym-Going Women; Misogynists Approve - there have been a lot more posts than this about the Sodini murders, this one talks about the response seen online.

…and I declare the president of Zambia to be obscene – one man’s porn is another’s… childbirth photography?

lol your understanding of feminism – there was an article about the evil horrors of feminism posted in Psychology Today… luckily, there was also a response in the same place!

A national electronic health & social record – HIPPA laws exist in the US for a reason. Several reasons. And here are some of them.

They are mine, they are mine, they are mine - Breasts are not public property or signposts to stare at, so stop acting like they are.

Hip To Be Square: Part Two In a No-Doubt Ongoing Series – Two different movie trailers that on closer analysis turn out to be… the… same movie trailer. Yet generate different reactions from the critics. How does that even work?

The post 20/20 vulvodynia discussion

08/08/2009 at 3:14 pm | Posted in Uncategorized | 11 Comments
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Last night, August 7 2009, the US television program 20/20 ran an episode of “Medical Mysteries” including a segment on female sexual pain disorders. The day before, August 6, Good Morning America also ran a shorter teaser segment on the same. It’s a pretty big deal since, it’s still a taboo to talk about sex frankly & openly in the media, especially when things don’t go as expected. Vulvar pain & painful intercourse have appeared on television before, but only very rarely, and not without well deserved controversy & criticism. The 20/20 episode was one of the few times where this sort of pain was addressed. Even more rare, the interviewees were actual people, not just made-up characters.

If you missed any of this, or want to see it again, here are resources. I don’t know how long these will stay online.

20/20’s site - the program’s main page
20/20’s video segment – the video in question
20/20’s article, Sex Pain: Millions of Women Have It – you can leave comments here too
Contribute – this is where to go to contact ABC directly about the 20/20 episode
Good Morning America’s site (the teaser preview video featuring Dr. Tim Johnson was embedded there as of 8/6/09)

Now that the show has aired, there’s a couple of things we can address. What comes to my mind first,

Once again, for some reason, the actual terminology for these pain conditions was not used. At no point were words like, “Vulvodynia,” “vaginismus,” “pudendal neuralgia” used. Related, overlapping conditions sometimes found in conjunction with vulvovaginal pain were not addressed in detail, including but not limited to, interstitial cystitis, fibromyalgia, and irritable bowel syndrome.

The omission of specific terminology is strange and awkward to me. One of the women interviewed, Chris Veasley, is the NVA’s associate executive director. Dr. Andrew Goldstein said that the pain conditions have a name, but it was not spoken aloud.

The program talked about what must be vulvodynia & vulvar vestibulitis, without actually using the words! I don’t understand why – Sex & the City used the words, so too did Private Practice. The 20/20 article Sex Pain uses the word “Vulvodynia” only once, to link to the NVA. Why does it not appear more frequently in-text?

Why do we not speak the words? In fantasy & science fiction stories, speaking a true name either gives or takes away power from the person or object being talked about – but in real life it doesn’t work that way. Speak the names! Speak, “Vulvodynia,” not, “She-who-must-not-be-named.”
Are you reluctant to speak the words on national television for fear of backlash by conservative groups & individuals? Is sex & sex pain still that much of a taboo? What is the reason?

The pain was described as vaginal, which, is technically incorrect at least some of the time – vulvodynia & vulvar vestibulitis happen in the vulva & vestibule (although you can certainly experience true vaginal pain too, or exclusively.) But why use “Vaginal” pain as a descriptor instead?
That mix-up happens a lot though in general – “Vagina” will be used where “vulva” is meant. I will forgive Susanna Kaysen for using the word vagina interchangably with vulva in her memior, The Camera My Mother Gave Me. But it is critical to point out the correct location of pain, for proper diagnosis, treatment, and description.
How many women will write off this episode as irrelevant to their very real pain, because thier pain IS vulvar rather than vaginal?

I do not agree completely with one of the women, Allison, who said that “Part of being a woman, is having female sexual organs, and when they’re not working properly, it’s kind of an assault on your ego as a woman.” I’m not completely comfortable with this statement, because not all women are born with female organs, recognizably female organs, still others will not have “Normal” female organs, and because not all women feel bad when their parts are not working as expected. It is not a requirement to feel an assault on your ego, when something is not going exactly to plan.

Still, I recognize, that in US culture at least, female sexuality is marketed & taught in such a way that it makes it very easy to feel bad about it, when you do not or can not live up to the arbitrary standards set up by the environment you grow up in. I know that. I feel it. I’m struggling with it. How do I reconcile my limitations and abilities, when the kind of sexual performance I see depicted as valued, is so often far out of my reach?

I would have liked to see a little more about how the vulvar pain spills out into other areas of life, although this was mentioned superficially – biking, wearing tight pants, sitting, walking… sometimes these ordinary activities are hindered by the pain. It’s sexual pain, yes, but it’s so much more than that. It can be pain that is there, whether or not there is any sex going on at all. It is chronic pain. It is vulvar pain. It can interfere with social activities, recreation, exercise, and work – to the point where you can no longer do any of these things.
All three of the women interviewed had been in long-term heterosexual relationships. We did not see the perspective of a single, nonwhite, queer, or senior woman.

This segment was 8 minutes long. That’s nowhere near enough time to cover all the material available on vulvodynia, vulvar & sexual pain disorders. I have no doubt that there is enough material available to make an entire hour or even two-hour long in-depth documentary. Perhaps as a result of this, ABC had to focus on only a few topics, but that meant that the show also only scratched the surface. Three common causes for vulvovaginal pain and three types of treatments were talked about.

I am one of the women who experienced all 3 types of the most common causes of pain and tried all three interventions mentioned in the TV show.

I was diagnosed while I was still on birth control pills, and a hormonal blood test revealed that my hormones were all out of whack. I went off of the pills and used a topical hormonal gel, and a follow up blood test showed the hormones were back to within normal range for a person my age. That gel helped a little, and I will not use hormonal birth control again.
I have/had poor pelvic muscle strength & functioning, and am addressing that with physical therapy. This helps a lot.
I took the surgical route (which is not named for what it is, a vulvar vestibulectomy,) to remove the borked out nerve endings in my vestibule  and that made a big difference, but I still needed that physical therapy to address the muscular issues. The surgical option may not be right for everyone, and success rates can vary depending on which scientific study we’re reading, and who’s personal anecdote we are hearing.

However, other treatments were not mentioned including but not limited to, topical lidocaine, oral antidepressants or anti-seizure medication, diet and alternative medicine. There’s more than three options available, and what works for one may not work for another.

These are but my thoughts on the program, and should not be interpreted as the only ones. There is much-needed discussion going on about the program elsewhere online and in the support groups.

So, still controversial, even after all these years. Perhaps the next program – and there had damn well better be another, as I cannot imagine vulvodynia disappearing altogether in the near future, much as I would like to see that – will be able to learn from the discussions taking place online. Keep the good parts, make adjustments where the criticisms are. Listen to the feedback!

I am glad to see this type of pain being discussed in the open.. but I want more. I want so much more.

MOAR.

Reminder: Vulvodynia on TV

08/06/2009 at 7:31 pm | Posted in Uncategorized | Leave a comment
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Reminder: 20/20 will be airing a segment on female sexual pain disorders tomorrow evening on ABC. The NVA & vulvovaginal specialists have been directly involved with its production. Check your local listings. I’m not sure what the options are if you live overseas & don’t get ABC though. Sometimes shows aren’t readily available in other countries.

In the mean time,

Did anybody see the Good Morning America show this morning? I missed the segment on sexual pain since I had to go in for work.

Not to worry though – luckily for us, the good lord saw fit to invent online video streaming. If you missed the show, go to Good Morning America’s website and under the header, “Recently on GMA,” click the link that says, “A Cure for Painful Sex?” I can’t link to it directly. I don’t know how long the videos stay online… watch it while you can, if you can.

Here’s what I’m thinking about the GMA segment -

  • Kudos for explicitly using the word “Vaginal” on tv, instead of dancing around or using something more vague – but why didn’t you explicitly  name the pain conditions? Why didn’t you speak the words now? Why not say “Vulvodynia,” “vaginismus,” “pudendal neuralgia?” You can name it on GMA AND on 20/20! This is the most egregious omission.
  • Tight pelvic floor muscles and physical therapy… he didn’t say the word “Vaginismus” or “Pelvic floor dysfunction” though. Speak the words!
  • “Excessive number of nerve endings…” Why don’t you say what that is? Say “Vulvar vestibulitis.” Say it. That minor surgical procedure… why do you dance around it? Say it, say “Vestibulectomy.”

But it wasn’t all bad…

  • The three women patient’s accounts of what it’s like to live with vulvar pain sound in line with the stories I’ve heard. Pain with sex, extending even into walking, wearing jeans, and bike riding. Difficulty getting doctors to take it seriously.
  • Dr. Tim Johnson said a lot of new research has been done within the last few years – but the text book he mentions, I think it’s out already. I have that book already. Maybe they filmed this segment a few months ago? What, is there another one coming out later on?
  • Dr. Tim Johnson pins down control pills as a causative factor in development of painful sex. I’ve heard the anecdotes, and seen a few scientific journal articles – but he comes out & says it. I know from experience, that this was true for me, but it doesn’t always happen. Has the medical community come to definite agreement on birth control pills & painful sex? Do we know which pills are most likely to do that?
  • You know what I didn’t hear listed as common causative factors for physical pain during sex? Things I usually hear – psychological problems, relationship problems, “Not enough lubricant,” low libido, things of that nature. But then, I’m sure that the, average of 7 doctors the patients wind up seeing to get a proper diagnosis & treatment, ruled those non-physical issues out. Or they didn’t rule it out and kept focusing on it over and over instead of thinking that maybe there’s a medical issue going on. I’m surprised – and a little relieved – that Dr. Johnson cuts to the chase. Sometimes those other problems are not at the core, and addressing them may still not solve everything every time. I think a lot of pelvic pain patients wind up having to waste a lot of time on doctors (and relationship advice columnists) who don’t know or do not believe that real, physical pain conditions exist.

Having watched the segment – some misses, but a little better than how I’ve seen pelvic & sexual pain handled on TV before. I did not detect negative judgements of the patients who go through this. The show handled it professionally.

With regards to leaving some things out, I want to give GMA the benefit of the doubt, since this segment is supposed to tie into 20/20’s show tomorrow. It wasn’t meant to be a whole in-depth analysis.

Also, I saw a commercial on TV for the 20/20 episode set to air, tomorrow. Still didn’t explicitly say “Vulvodynia” on the commercial; it asks something like… I can’t remember the exact quote… “Why do millions of women feel pain with sex instead of pleasure?”

Short notice – another TV show on vulvodynia

08/05/2009 at 9:27 pm | Posted in Uncategorized | Leave a comment
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Ack. Found out about this one at the last minute!

From His and Her Health.com forums -

Watch Good Morning America – Thursday Morning
From: “National Vulvodynia Association” <chris@nva.org>
Dr. Johnson to Discuss Sexual Pain/Vulvodynia on Good Morning America
Thursday, August 6, 7-9am ET

Prior to Friday’s 20/20 segment on sexual pain and vulvodynia, Dr. Timothy Johnson, ABC News’ Chief Medical Editor, will appear on Good Morning America tomorrow – Thursday, August 6th. The show airs from 7-9am ET on ABC.

Then, be sure to tune into 20/20 on Friday night (10pm ET) to watch Dr. Johnson’s full interview on the diagnosis and treatment of sexual pain and vulvodynia with Andrew Goldstein, MD, and Amy Stein, MPT. Dr. Goldstein directs the Center for Vulvovaginal Disorders in Washington, DC, and New York City. Ms. Stein, a New York-based physical therapist, specializes in the treatment of pelvic and urogynecological pain disorders.

The segment will also feature the stories of two women with sexual pain, as well as an interview with Christin Veasley, NVA’s associate executive director, and her husband Melvin.

To check your local listings for both programs, visit: http://www.tvguide.com/Listings/default.aspx.

It sounds like there will be a segment about vulvodynia tomorrow morning (August 6) on the program Good Morning America. This is not going to be the same as the 20/20 program that will air the following evening. Sounds like something complimentary to me. An appetizer. Something.

It’s something.

So if you like to watch TV in the morning, it may as well be this TV show.

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