I lost 8 months to depression and all I got was this lousy blog post

01/26/2013 at 8:27 pm | Posted in Uncategorized | 12 Comments
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Hello readers, blog mistress K here again, some ~4 months after the last entry. It’s a new year and I’ve been wanting to write something for awhile… something about going through depression yet again for what I initially thought was the 3rd time… but actually turned out to be more like the 4th or 5th time in my life. (But hey, who’s counting?) Of course, it wouldn’t be much of a party – or a blog post – if my vagina didn’t somehow get involved. Don’t worry – it did.

Feminists with FSD, now featuring soul-crushing depression!

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[Description: Unicorn pony Twilight Sparkle, looking quite sad with her head down and eyes closed. (Source) (Why a unicorn?)]

My life has been kind of like this for awhile:

S1E20_Sad_Rarity

[Description: Unicorn pony Rarity doing her job, working at a sewing machine, but clearly not into or enjoying it. (Source.) (Why a unicorn?)]

I can still do work, do stuff, and do a decent job at it, but I haven’t really been living, you know? Not really feeling it. It, referring to, everything.

It’s been a long 8 months. I’ve been struggling with depression since early 2012. I’m only just now starting to come out from underneath the worst of the most recent depression, after trying a couple of different treatments. I’m going to break it down for you over a blog post or two to catch up.

The trigger for this round of depression is most likely tied up with work-related stress. I’ve been (and continue to be, for now…) stuck at a dead-end job. The job is related to the skills and education I gained during college, so I am able to do what I trained to do. But I do so at a company where we’re understaffed, overworked, and where stratified office politics rule. (In other words, ~a typical office environment!) It’s not the best or the worst job I’ve ever had, but the most important thing is that I’m dissatisfied there. Since it’s clear to me now that there’s no room for growth with the company, I’ve been working on improving my career path by pursuing continuing education outside of work. Continuing education is not easy – it’s time consuming, it’s challenging, and even the continuing education itself is related to the depression – it’s forcing me to re-evaluate my old survival techniques and hang-ups about grades & perfectionism. Plus, my concentration is pretty poor – I can only go for short periods before I get interrupting thoughts and need to take a break. The worst interrupting thoughts are related to depression.

But after awhile – and before I committed to working towards the continuing education – the job wore down on me. Being stuck at work reminded me of being stuck at home in a toxic environment. Feeling like this went on for weeks that turned into months, and eventually, with no hope of escape, I developed depression again. It was bad. I couldn’t make the invasive self-deprecating thoughts Shut Up. I internalized every little mistake as reflecting poorly on myself as a person. I felt like everyone could see right through me. I was emotionally and occasionally physically numb, unable to express or recognize my own emotions – my emotions were absent, I felt only Static. During the worst of the anxiety, I was spacing out, unable to feel physical stimulation (hot, cold, textures, etc.) And I was having nightmares a lot more frequently than I do when I’m not-depressed.

This isn’t normal sadness. The easiest way to describe it is to say it’s more like the stuff featured in some webcomics I relate to:

Hyperbole and a Half: Adventures in Depression! 
Depression Comix
Occasionally, comics etc. about depression on web comic & artist blogs

This has happened to me before. I don’t know how I came out of previous depression episodes – my memory is that I just muddled through it until it resolved on its own. So I don’t know how to be more active about recovery currently without getting help & instructions. Due to Stigma, I wasn’t permitted by my (Insecure, problem-filled/causing) family to seek aggressive treatments (medication) when I was younger, and I never had a chance to confront & work out my issues in a supportive, therapeutic setting.

But I got Shit To Do now, and I’m physically far away from my counter-productive family members. It’s also worth noting here that I Have Insurance – which means I have the means to seek treatment. Not everyone has that option.

But what to do, where to start? I looked for advice on what to do, got advice and I took it. I called for a referral to a therapist and started going in for weekly talk therapy without medication. I read self-help books, some of which were more helpful than others. (I won’t be doing a book review of these, but I do want to point out some of the titles I personally found more useful than others: The Gift of Fear, OutliersTrauma & Recovery, Will I Ever Be Good Enough, My Mother MyselfToxic Parents – Based on the last few titles, you may be able to guess where this is going in the end…)

But talk therapy was slow and the results were almost imperceptible… Lots of two steps forward, 1 step back… 2 steps forward, 2 steps back… 1 step forward, 2 steps back… two steps forward, 1 step back for a net increase equal to or less than 1 [Unit of Improvement.] Sometimes I left therapy feeling worse than when I went in. So for months, I persisted, but felt stagnant. I tried to work through my issues – but I kept bumping up against walls, ruminating and getting frustrated. I tried the self-help exercises recommended in the books – and felt more embarrassed about having to confront so many of my own issues when I wrote them down. I tried being nice to myself – and kept defaulting back to self-deprecation. My inner monologue remained turned against myself.

Yet in spite of the mental hardship, my pelvic pain issues, for the most part, behaved. (Isn’t that incredible?!)

Sure, I could feel the pelvic muscles tensing up and getting uncomfortable when I was under stress – but I didn’t go through any acute pain. Even with the depression, I was able to have sexual activity solo & with my partner, and I enjoyed orgasms on a regular basis. My libido was the same as its ever been, so I still had sexual desire. In fact, sexual interest & pleasure were one of the main things keeping me going! I even started to be able to have all-out penetrative PIV sex, with little to no pain. (It’s still not perfect and will never be perfect – but that’s a big improvement compared to a few years ago!)

But then, that all went to Hell because I developed a Cyst.

And that pushed me over the edge till I hit Rock Bottom.

This cyst. This fucking cyst. Let me tell you about my cyst, because that’s how the depression ties into this being a “Vagina blog.”

This all went down over the course of about 48 hours…

Sometime around a weekend in October, I noticed an acutely painful vulvar bump, in between the labia minora and clitoris. It’s a bad, scary place to feel a painful lump. (I suppose all places are bad and scary to find cysts.) You’d think I’d have noticed something starting to go amiss sooner, but no: It hadn’t even been there a day or two earlier! By the time I found it, it felt huge…

…But the truth is, the cyst never got any bigger than pea-sized.

After I noticed the pain and found the source, the cyst grew more defined. Over the next ~2 days, swelling from a sore, vaguely internal lump to a visible, discolored, painful bump.

From experience and from having already read up on vulvar bumps & lumps, I knew it was a cyst. I’ve had one before, related to the vulvar vestibulectomy surgery. I knew going into surgery in the first place, cysts are a potential side effect, and I accepted that risk. So I wasn’t surprised when the old one showed up near the surgical site. That old one formed nearby one of my Bartholin’s glands, and at one point was big enough for my physical therapist to notice. But the old one just kind of resolved on its own and hasn’t come back in years.

The weird thing is, this new, recent cyst was nowhere near the surgery site! In between the labia and clitoris — WTF, what are you even doing there?! Nothing happened there! I was like, “CYST. CYST. WAT R U DOIN. STAHP!

Since I knew what it was, I also knew what to do as treatment at-home. I called a nurse hotline to see if I should go to urgent care early, but was given the same information I already knew – take it easy, use warm compresses, sitz baths, hope for the best; maybe it will resolve on its own.

This is a TL;DR tweet version of how that plan went down.

I followed the cyst care instructions. I kept warm compresses on it and didn’t mess around (squeeze) with it. Spent some time in the sitz bath. Walked funny. Complained a lot about being in pain, took some OTC painkillers. No sexual activity. Continued doing my continuing education study stuff in spite of it all.

And then of course, it broke.

By itself. And that made a mess. And it scared me. And luckily it broke while I was at home, so I ran into the shower and at this point I’m like, “Okay it broke on its own, whatdoIdowhatdoIdowhatdoIdoooo!”

(It may be worth noting here that, anecdotally  I’ve heard that broken cysts can smell bad… this one had no odor whatsoever.)

After cleaning up the wound and washing my hands, what I did was call the nurse hotline again and got told basically, “Yeah you can probably go in for urgent care now…”

So I hauled ass to urgent care.

And of course by the time I got to urgent care, I already knew what the treatment for draining a cyst is: You can get an incision,  marsupialization or a word cathether installation.
None of these really appeal to me since I don’t want to risk any more scar tissue in and around my vulva, especially not so close to the side of my clitoris. In the end, I was too chickenshit to get the usual treatment! I said to the attending doctor, “Just give me the antibiotics to kill off whatever infection caused this and make a follow up appointment for a few days from now in case I get a complication! I’ll take my chances!” The attending doctor agreed, took some swabs to check for germs and complied – for better or worse, I decided my best course of action was the least invasive one.

Cysts and depression don’t really have anything to do with one another. They should develop independently of each other. However, in my case, the wires got crossed and became interconnected: The cyst forming and breaking was enough to finally break me.

Depression alone is one thing… throw a vaginal problem into the mix and that’s where I draw the line. Developing a vulvar problem while depressed triggered all the other old memories and anxieties from when I was stuck in the worst of the vulvar pain. I felt like I was right back to square one with the Vaginismus and the Vulvodynia/Vulvar Vestibulitis. So not only was I dealing with “Regular” depression and anxiety, I was also dealing with old sexual problem shit and invasive thoughts!

I crossed the minimum thresh hold required to make going on antidepressants worth the risks of sexual side effects. By now I was a shivering ball of anxiety, anger, fear and sadness. I refused food; called in sick from work and spent some time in bed, hiding. None of the self-help techniques in my books or suggested by the therapist could reach me. No one could console me.
By now my thought process when I was hiding in bed was something like, “What is the point of staying off of antidepressants due to a fear of sexual side effects, if I’m just going to go around developing sexual side effects anyway?! Fuck this shit. I’m not doing this anymore. Oh but then people are going to say shit like, ‘Americans are all over-medicated and ~*~Big Pharma~*~ and blah, blah, blah, overdiagnosis, blah blah blah STIGMA.’ Well FUCK THAT TOO!”

At the follow up appointment a few days after visiting urgent care, the doctor confirmed that the wound was still draining on its own. All the swabs came back negative for the strains of bacteria tested for. There wasn’t much else to do or that needed to be done. No need for surgery or a word catheter at that point. Whatever caused the cyst to form in the first place, I still don’t know. The doctor okay’ed going off antibiotics early (I am fully aware that you’re supposed to finish the entire course. I was instructed by a medical professional to not do that in this case. Kids, don’t try this at home.)

And while I was still in the examination room, I asked the doctor to give me the prescription for Bupropion. Because seriously, fuck this shit, at that point I was like, I’m not doing this depression the hard way anymore. I went on medication for it…

…And for awhile, that worked out pretty well. The medication was doing its job. I started making more progress in therapy. I started to feel better…

…Then I developed a side effect: I started losing my hair.

To be continued…

Feminists with FSD does Orgasm, Inc.

10/12/2011 at 10:51 pm | Posted in Uncategorized | 5 Comments
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It’s the post you’ve all been waiting for and the one I’ve procrastinated on for far too long.

Gather ’round readers and gender studies students (because I know that you’re going to watch this sooner or later for class,) and behold an opposing view of the sexual dysfunction documentary from someone who actually has female sexual dysfunction.

I’m not doing a chapter-by-chapter breakdown of what happens during the film; you can find that elsewhere. Today we’re going to look at problems and places for improvement in the film. Some problematic elements with the fim are intrinsic to the philosophy the director embraced, others are problems of omission: Viewpoints left out, intersectionality not explored, things that should be investigated further.

Orgasm, Inc.’s alternate title could be,Sex is not a Natural Act, abridged version. If you’re short on time and want to learn about the feminist social construction perspective of sexual dysfunction, then the film will be a time-efficient crash course. To most uninitiated viewers, the film will entertain and present new information. I’ve already heard Orgasm, Inc’s. arguments regarding the history and validity of sexual dysfunction elsewhere, so I spent most of the 80-minute film bored to tears.

What’s the social construction perspective of sexual dysfunction? Basically, everyone’s sexuality is shaped by culture, and sexuality is varied with a wide range of normal. But the deck is stacked against the ladies, due to gender roles, restrictions on reproductive rights and misogyny. Under social construction, what might be called sexual dysfunctions are better identified as sexual problems – understandable, if annoying, responses to crappy circumstances. Most women’s sexual problems are social in origin, (stress) and can be addressed with broad changes – and some individual lifestyle changes. This is all well & good for most women.
Contrast this with the medical model of sex, which sees sexuality as a natural phenomenon, acted out in a fairly rigid series of steps (arousal, plateau, orgasm, resolution.) Problems expressing sex (performance) are viewed as dysfunctions from the norm, stemming from organic imbalances that can be addressed at the individual level – using medicine. But even under the medical model, most people are generally healthy and can perform sex.
No matter how you slice it, most women don’t have sexual dysfunction.

Who is Orgasm, Inc. for? Who did Canner choose to interview? What audience did Canner have in mind? Whose care is prioritized?

Prominent interviewees include sex educators Kim Airs and Carol Queen, and neuroendocrinology professor Kim Wallen. Most of the interviewees included in the film represented members of the medical industry. On the flip side, Canner spoke with journalist Roy Moynihan and representatives of the New View Campaign, an activist organization which takes a social construction perspective of sexual dysfunction.

Orgasm, Inc. is for most women; the ones without sexual dysfunction. Liz Canner is deeply worried about the well-being of normal, healthy TAB women. Unfortunately the film left me feeling isolated, as one who actually does have and sought treatment for sexual dysfunction. Interviewee Moynihan states, “There’s a lot of money to be made telling healthy people they’re sick,” as recently recognized (if still contentious) diagnoses such as restless leg syndrome and social anxiety disorder scroll across the screen. The concern is that if Big Pharma can create the perception of a disease (that must be addressed,) and develop treatments, then there’s potentially billions of dollars worth of sales to be made. This quote prioritizes protecting the majority from Big Pharma, rather than prioritizing care for the largest minority, especially if we pause to recognize that many medicalized conditions are real – just invisible, and poorly understood.

# of interviews with someone who identifies as having female sexual dysfunction: Unknown. Liz Canner interviewed four non-professional women about their experiences with sexual problems. Of these, only one, Charletta, identified as having “A disease,” referring to FSD. Upon learning that most women require clitoral stimulation to reach orgasm during intercourse, she changed her mind and decided she was normal after all.
The film juxtaposes Charletta’s interviews with commentary about how most women reach orgasm, with the implication that Charletta never had FSD to begin with. Canner comments, “Charletta was enrolled in a study for women with FSD, despite the fact that she was healthy.” Yet clearly, Charletta identified as having FSD at one point and was upset about it – after all, no one wants to be considered diseased, right? Disease and mental illness and disability are bad things to have!
And then, she dropped it from her identity.
I won’t speculate as to her status. Rather, it is my firm belief that a valid alternative way to address the stigma & distress Charletta felt from identifying as having sexual dysfunction, is to recognize that it’s okay to have sexual dysfunction. Stigma need not be intrinsic to sexual dysfunction, it comes from outside sources. From where? Well, I’m not the only one who notices that there’s quite a lot of limp and small dick jokes in the media – a social force rather than medical.

It may be worth noting that during an interview with the founder of the pharmaceutical company Vivus, Virgil Place said he created the company after developing erectile dysfunction after undergoing a radical prostatectomy for cancer. This may be the only other person included in the film who openly identified as having sexual dysfunction – of the male variety.

So, why choose Charletta? Critically, she was one of 11 patients in a test of Dr. Stuart Meloy’s sensationally-(and un-originally)-named Orgasmatron. It’s surgically installed hardware that sends sends electricity through the body, with the goal of inducing orgasm. It reminds me of a TENS machine for pain management, though more invasive. This makes sense, because the device was originally designed for chronic pain patients and sexual stimulation was a side effect. Furthermore, the risks associated with surgical implantation of the Orgasmatron are derived from the Safety Information sheet about using Neurostimulation Systems for pain management. (The director makes no comment as to what decisions chronic pain patients should make when considering electronic stimulation for pain management.) Since installing the Orgasmatron involves surgery and potentially serious side effects, it’s an extreme measure. Nonetheless I can still see a potential application for some interested patients.

It took surgeons twice as long to install the Orgasmatron into Charletta’s spine as it did with other patients, and then it did not work as intended. She had to have it removed.

So what happened to the other 10 patients?
According to Dr. Meloy, the device stimulated 8 of 9 patients, or 10 of 11 patients (I don’t know why two figures are cited.) 6 of the women in the study kept the electrodes in. And “It worked” (Meaning it induced orgasm?) in 4 of those 6 patients.
So why don’t we get to hear the first-person accounts of these women? What’s going on with them? Unfortunately we’re not likely to find out any time soon, as I have yet to find Meloy’s peer-reviewed primary source journal study.

– # of times we learn about dyspareunia/sexual pain/chronic pelvic pain: 0.
Even though Dr. Leonore Tiefer has stated that dyspareunia is the only valid & important female sexual dysfunction, (a problematic statement with which I disagree,) Orgasm, Inc. doesn’t talk about it. How painful sex fits in with the critique of sexual dysfunction and pharmacological treatments (often off-label) broadly remains unknown. The film addresses pleasure, orgasm and arousal, but not pain, and certainly not other overlooked sexual problems. It’s another cop-out.

Orgasm, Inc. criticizes the famous and questionable statistic that 43% of US (cis, I presume) women have some form of female sexual dysfunction. Even I agree that number is overestimated. But there was a subsequent 2009 study that included “Personal distress” as a criteria for sexual dysfunction, and using this modifier, the statistic revised downward, to some 12% of the US female population having a form of sexual dysfunction. And that’s only if we completely exclude dyspareunia from the definition of FSD! I still wonder whether the raw numbers really matter – if only 12% of the population experiences FSD, is that small enough to make it real?
In fairness, Canner did most of her filming prior to 2009. The new study came out too late for the filming, but could have been included with the DVD extras, which include documents through 2010.

The film’s coverage of genital surgeries is brief, but that 5-10 minutes encapsulates serious feminist critique. I never know how to address this topic, because I went through vulvovaginal surgery. And although I’m ambivalent about cosmetic surgeries, I hate the way almost all discussions about it go – including Orgasm Inc’s. 
The film makes no commentary on genital surgeries done for health reasons (cancer, vulvodynia, burns & injuries, etc.) or for bottom surgery for trans* people. Feminist discussions of genital surgeries usually exempt from critique genital surgery done for “Medical reasons,” whatever that means — medical needs are rarely defined. What scares me is there’s this binary, where surgery for medical reasons is “Okay,” and for asthetic reasons is “Not okay.” So what happens if someone undergoes genital surgery for reasons of both looks (or insecurity) and physical well-being – that person is likely to have to prove to an outsider’s satisfaction, that their procedure was in fact medically mandated. Canner focuses exclusively on non-medical surgeries, as a husky voice whispers, “Sex surgeries.”

“Sex surgeries,” eh? Maybe it’s not as medical and acceptable as I thought it was after all. This phrasing presents me with a unique problem, because the vulvar vestibulectomy allows me to have sex – theoretically, anyway; in practice, it’s a bit more complicated. Since I experienced pain, we can probably consider this a “Medical” surgery, but my life was never in any direct danger. VVS was not going to kill me, though it did depress me and send me into a dark place Idon’treallywanttotalkaboutrightnow. Theoretically, if I never attempted vaginal insertion of objects ever again until the day I die, then I might have been able to go my whole life with minimal discomfort. So since I could have made some lifestyle modifications instead, were my reasons for surgery still medical enough? Or is what I had just another sensational “Sex surgery,” yet another form of FGC?

Canner cites an editorial in the BMJ comparing cosmetic genital surgeries to female genital mutilation, and like many peer-reviewed articles & editorials, it generated critical responses. Responses brought up the difference between genital cutting forced upon young girls without their consent, whereas plastic surgeries are actively sought out by consenting clients. Other responses raised concerns that the comparison draws attention away from FGC globally.

That’s all I’ll say about the film’s coverage of genital surgeries for now. Although I’d like to talk more about surgery, I don’t even feel comfortable getting into my own experience on this blog.

The critiques of sexual medicine apply to the medical industry broadly. Of course a movie about medicine and sexual dysfunction focused only on sexual medicine. However, most of the critiques about Big Pharma’s involvement in shaping medicine apply to the field broadly.
Canner et al address problems inherent in the growth of modern medicine, including a for-profit motivation, direct-to-consumer marketing, defining what it means to be sick and well, and financial conflicts of interest between doctors/researchers & pharmaceutical companies. I noticed that Vivus staff talked about the influence of stock market speculation as a driving force behind drug development, which in light of the current US recession & Occupy Wall Street protests and who is most likely to actually have stock in the first place, makes me go “Hmmm.” These are systemic problems, inherent in Big Medicine itself. As such, it’s going to take systemic changes to the healthcare industry in order to rein in corporate greed and improve patient health.
It becomes a delicate balancing act though, when we recognize that these systemic changes have to occur in such a way as to minimize harm to current and future patients who need and benefit from medical interventions. We can’t outright kill Big Pharma without there being casualties at the individual level. Canner’s DVD extras link to a few organizations that viewers can get involved with in order to critique Big Pharma, however, I myself am not comfortable with the tactics employed by one of the most vocal activist groups.

Orgasm, Inc. does not address the stigmatization of sexual dysfunction, a stigmatization which regrettably the film contributes to.
I am constantly dismayed when I see arguments against the validity of sexual dysfunction broadly get used at the individual level to invalidate women’s experiences with sexual problems – to jeer, to crack jokes, to partner-blame. I fear that a woman who identifies as having sexual dysfunction won’t be able to talk about it, because someone more enlightened will refuse to believe her – and will instead ‘splain why she is so deluded and gullible and brainwashed. I have this fear, because that’s exactly how I feel when I try to talk about FSD on any blog other than my own. This already happens.

If you seek medical treatment for sexual or other health problems, then you are doing something bad and wrong. This is made abundantly clear with Orgasm, Inc’s. theme song lyrics, “Sex Pill! I need those poisons baby!” and when interviewee Kim Airs explicitly states, “The whole thing with taking drugs, for this or that, my belief is, living for [or ‘we live in?’ Didn’t quite catch that – K] a drug-free America. I mean, don’t take drugs!”

Is this really the ideal America to strive for? The US war on illegal drugs reveals that enforcement disproportionately targets people of color. It also holds back potential treatments for some disabilities, leading a few states to legalize marjiuana. Patients with prescription drugs can get legally and medically busted, too. Legal use of prescription drugs for this (depression?) or for that (chronic pain?) is already sneered at by many (including some folks in my own family) with dangerous consequences to those who need the meds. (She didn’t say what this or that is.) So now we have people with chronic pain conditons who have to jump through hoops & present themselves “Correctly,” in order to not appear as a junkie. So some folks have to live in a drug-free America whether that’s what they need or not.

Some interesting areas for discussion were not explored; perhaps a budding documentarian is reading this and will run with it. The film does not talk about sexual dysfunction treatments + insurance. In the United States, there is an ongoing healthcare financial crisis. Millions of Americans – the figures range between 44 million to almost 60 million – are without health insurance, or spent at least part of the last year doing without. Recent news tells us that those who do have health insurance face increased out-of-pocket costs. Meanwhile, government safety nets for the poor are seeing their budgets cut. So there’s no word on folks who may consider themselves to have sexual dysfunction, but who cannot afford to seek treatment. This is something I’m facing right now, as I need to go get physical therapy again and can’t afford to pay for the deductible.

So if you can’t afford medical treatment, then that’s good, right? Now you must focus on non-medical interventions, which have fewer side effects. Hold that thought – remember that it is possible to seek non-medical intervention for sexual dysfunctions, such as talk therapy with a licensed sex therapist or psychologist, and to have such costs be partly covered by insurance. The blogger Minority Report has written about taking this route, and she’s done some math. Talk therapy can become pricey, and even sex therapists themselves express disappointment with the outcomes. I have no doubt that there’s a connection between deregulation and the privatization of healthcare (insurance,) but I do doubt that I can explain it here. (That hasn’t stopped me from trying, though.)

Orgasm, Inc. final thoughts:

– Do you still want me to do a play-by-play review?
– Do any regular readers here want to write a review as well? Maybe you saw it and just ❤ it idk
– So basically, we have a movie here about FSD, with either minimal or zero representation of folks who actually have FSD (depending on how we look at Charletta.) We have an old guy with ED and one lady who decided she’s totally fine in the end.
– I’m hearing people talk for me, but not using an accurate reflection of my own voice.
– How much unchecked privilege do you have, that you can protest the very existence of a health problem, with no room for any exceptions, when there are people going, “Hey, I think something is going on over here I need medical help with”???
– I am still not convinced that FSD is an invention created by Big Pharma, nor that there is no place for pharmacological options for sexual problems.
– I am still wary of the social construction model of sexual problems.
– I am still wary, because it’s supposed to address weaknesses in the medical model, but it has its own fucked up weaknesses and all it does is fuck up in new ways. Like it tries to address blanket statements in the medical model, but then it just creates new blanket statements.
– I am certain that viewers will approach this blog to ‘splain to me how the film opened their eyes and how I still don’t know what I’m talking about, because I’m not looking at this ~objectively or something.

It wasn’t all bad. It’s definitely a movie. And I agree with some points in the film, and there’s parts that I appreciate Canner including, like the part where we hear an anonymous woman talk about negative side effects she experienced after her genital surgery. (What, am I supposed to say it’s totally risk-free and problems never happen and la-de-dah? If anything I know full well complicatons can result.) I know sex education matters, I know an equitable division of labor matters in couples (though where that leaves the single ladies who just miss masturbating remains unclear to me,) I know Big Pharma is motivated by profits. I know most women never have to deal with this shit, I know drugs cost money and have side effects, etc. etc. etc., Reganomics. I am fully aware of all this. But a lot of people love this film unconditionally – so why I am I still seeing some flaws. Was it overrated? Yes, at least I thought so. It still wasn’t enough to convince me to go over to the other side.

Doctors debate dyspareunia part 4: The debate continues

09/19/2011 at 10:51 pm | Posted in Uncategorized | 3 Comments
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“The sad truth is that at our current state of knowledge, sexual dysfunction is whatever sexologists or others say it is” – Yitzchak M. Binik, Ph.D.

The above quote comes from the person responsible for setting off the 2005 sexology debate about how doctors should address dyspareunia (painful sex,) and it succinctly reflects my own frustration with the field of sexology.

Recently, I have directed reader attention to a debate that took place amongst doctors and other professionals tasked with treating sexual pain problems. The debate started when Dr. Yitzchak M. Binik wrote in to the peer-reviewed journal of the International Academy of Sex Research, Archives of Sexual Behavior, on whether dyspareunia should be viewed primarily as a pain problem or as a sex problem. To catch up with this blog’s review of the debate, read part 1 here, part 2 there, and part 3 last.

Dr. Binik’s original article outlined his position that sexual pain is best classified as a pain condition under the DSM-IV-TR criteria. Currently it remains classified as a sexual dysfunction, though the soon-to-be-released DSM-V will likely change the name and the definition.

Dr. Binik’s publication in the Archives received 20 responses, expressing varying levels of support. I did not read all 20 of the responses he received. In parts 2 and 3 of this blog’s dyspareunia-as-pain series, I zeroed in on Dr. Leonore Tiefer’s fascinating and contradictory response, because I’m already familiar with the rest of her work with regards to sexual dysfunction.

Dr. Binik reviewed each response to his original article, and finally addressed them in a sequel, Dyspareunia Looks Sexy on First But How Much Pain Will It Take for It to Score? A Reply to My Critics Concerning the DSM Classification of Dyspareunia as a Sexual Dysfunction. Now this is another article behind an academic firewall, so most readers can’t see the full text. In the interests of spreading knowledge about sexual dysfunction, I can only provide an executive summary.

The first thing that jumps out at me in reading Dr. Binik’s final answer is that, this article is almost intolerable.
Basically, Dr. Binik says that he was late in getting back to everyone who replied to his original article because he was distracted by baseball season. I find it ironic that, in light of the continuing debate among sexologists about the appropriate use of the term “Sex addiction,” here Dr. Binik flippantly refers to his interest as “my baseball addiction” (63.) My amusement eventually gave way to groans of annoyance with all the sports metaphors and puns strung throughout the rest of the article. Clearly, Dr. Binik still had baseball on the brain when he penned this reply. That in no way diminishes the validity of his arguments; it just annoyed me on a personal level.
Remember, there is already a baseball metaphor used in casual conversations about sex – “Bases.” Each base represents an arbitrary milestone in heterosexual sex, where running through all 4 bases means you’ve progressed to hetero, PIV intercourse.
Fortunately, the article is short – about 4 pages, as opposed to the original 10+, so I didn’t have to put up with the sports jargon for long.

Dr. Binik acknowledges that his original article met with mixed reviews from his colleagues & peers. For the most part, Dr. Binik’s assertion that sexual pain should be reclassified as a DSM-approved pain condition did not go over well. Three respondents endorsed Dr. Binik’s original position that sexual dysfunction should be reclassified as a DSM-approved pain problem. Five vehemently opposed the change. Nine responses agreed with part of what Dr. Binik said, but not everything. And three didn’t really address the question at all (63). You can find publication details about the 20 responses here. PubMed does not provide full text or abstracts for any of them, but I have GOOD NEWS, everyone! Today I found a compilation of all of the responses to Binik’s article on Ohio State University’s website! If you’ve got hours of free time, you can read and analyze each individual response, spanning some 40 pages! Except for the response we’re looking at today.

Dr. Binik interprets the disagreements as stemming from four basic positions:

(1) I overgeneralized from one typ eof dyspareunia – vulvar vestibulitis syndrome (VVS); (2) my reclassification strategy for dyspareunia was of dubious clinical utility; (3) I did not recognize that dyspareunia really is a sexual dysfunction; and (4) I confused symptom and mechanism in my discussion of classification (63).

Dr. Binik did not deny focusing exclusively on VVS, even though it is not the only type of pain one can experience during sexual activity (63). It is, however, the best researched type of sexual pain, and the research on it provided the most support to Dr. Binik’s position (64). He talks about how post-menopausal dryness & vaginal atrophy may be another sexual pain – except for the part where, due to lack of systemic research on the topic, he isn’t convinced that these problems can account for dyspareunia (64).

To the criticisms that reclassification (moving dyspareunia from sexual dysfunction to pain condition,) wouldn’t solve any problems, Binik responds that the outcome results couldn’t possibly worse than they are now. Some critics pointed out that both the sexual dysfunction and pain condition categories in the DSM-IV-TR both have problematic elements (64). What those problematic elements are, is not discussed in this particular article; we need to examine the primary source responses in question for supporting details. Dr. Binik, however, contends (perhaps somewhat blithely,) that if professionals fix the problems inherent with the DSM pain classification, then sexual pain would fit in with that category (64). And with regards to concerns that pain clinics may not be prepared to handle sexual complaints, Dr. Binik says,

Several commentators (e.g., Carpenter and Anderson, Strassberg) implied that the sexual concerns of women with dyspareunia might get ignored if they go to pain clinics. I think they underestimate clinicians/researchers, such as Masheb and Richman, who work at such multidisciplinary clincs and are very sensitive to sexual issues. It is no more difficult for professionals at a pain clinic to learn about sex than for sexologists to learn about pain (65, emphasis mine.)

In that case, my fellow folks with sexual pain, we are fucked! And not in the good, clean fun way; I mean, I am so completely frustrated with how poorly some notable sexologists handle sexual pain! If I have to look to sexologists as an example of how professional disciplines handle overlapping issues, then I am hopeless that pain professionals could possibly do any better with sex! I have seen sexologists and popular sex bloggers online who write about dyspareunia, and the extent of their writing is, “Refer to your doctor.” That’s it; that’s the extent of their learning, to this day in 2011. Since there are still sexologists who can’t be bothered to learn about the intricacies of sexual pain, I remain unimpressed. So given sexology’s poor track record of handling dyspareunia, why should I believe a pain doctor could do any better at handling sexual problems?

Facepalm Carl Pictures, Images and Photos

[Description: Carl – a heavy, hairy white guy from Aqua Teen Hunger Force – looking exasperated and doing a Facepalm. Wearing a white tank top and tacky gold chain.]

Moving on, other commentators maintained that sexual pain is and should continue to be recognized as a sexual dysfunction. This was Dr. Tiefer’s surprising, contradictory argument. However, when Dr. Binik explicitly addressed Dr. Tiefer’s response directly, he clearly missed her point.
See, Dr. Tiefer’s whole schtick is that sexual dysfunction is an artificial construct designed to benefit the medical industry, Big Pharma in particular. The New View Campaign’s social construction perspective dictates that most sexual problems stem from social problems and can be addressed through broad, non-medical interventions. But Dr. Binik clearly is not familiar with The New View or with Dr. Tiefer’s work, because he said,

For example, Tiefer argued that “dyspareunia is the only true sexual dysfunction,” because “…sexual problems [are best defined] as discontent or dissatisfaction with any emotional, physical, or relational aspect of sexual experience.” (p. XX). While I have some sympathy for this definition, it is too broad since everything that intereferes with sex (e.g., watching too many baseball games?) becomes a sexual dysfunction (65).

Wait, what the f—?! Gaaah!!! That’s not what she said! She never said that! That’s the opposite of what Dr. Tiefer’s been saying for ten years!!! I cannot believe — I can’t deal with this shit! The right hand doesn’t know what the left is doing!

[Description: Captain Jean Luc-Picard, a bald white guy from Star Trek, doing the Facepalm.jpg thing. From Know Your Meme.]

One area where Dr. Binik and Dr. Tiefer agree, is that the current classification of sexual dysfunction in the DSM-IV-TR is so problematic that it probably needs to be scrapped entirely and done over – and this is, apparently, one of the reasons why Dr. Binik wants dyspareunia moved out in the first place (65).

The last main argument against Dr. Binik’s reclassification scheme is the one I’m having the most difficulty understanding. Some commentators questioned whether Dr. Binik was endorsing a classification scheme based on symptoms or one based on mechanisms (the underlying causes of pain, like inflammation.) Dr. Binik clarifies that he doesn’t like symptom-based classification schemes, but we’re pretty much stuck with that until researchers figure out what the mechanisms behind sexual pain actually are (66).

Dr. Binik then responded briefly to a few additional criticisms of his original article, like the fact that he left vaginismus out of the discussion (an oversight he didn’t want to make but felt obligated to do since vaginismus is treated differently in the DSM for some reason) (66). Binik actually retracts one of his arguments in favor of moving dyspareunia over from sex to pain. Initially, Binik suggested research funding as one of the reasons he supported making the switch, thinking that pain research is easier to fund since it’s less controversial than sex research. He was called out for this claim by Black and Grazziotin (66).

In the end, Dr. Binik was not convinced by the respondents that sexual pain is best left as a sexual dysfunction. He is glad to have started the conversation though, and it’s possible that this discussion did play a role in the changes to dyspareunia as described by the DSM-V. Unfortunately, Dr. Binik uses a baseball metaphor with a double-entendre to conclude his article with an expression of gratitude with participants in the conversation,

“It is clear that my article did not hit a home run; however, dyspareunia is looking sexy enough to have finally gotten to first base. I think it will finally score in the major leagues” (66.)

He means his article wasn’t met with the adulation and acceptance he was expecting. This is an awkward way to put it though, considering that dyspareunia, in my experience, is the opposite of sexy and here again all I can think of is the sexual double entendre of baseball metaphors. Either I have a dirty mind or else Dr. Binik overlooked the phrase and how it might interfere with a serious discussion of sexual pain.

So what did we learn from this debate? Here’s what I learned:

If there’s only one lesson I want readers to take home, it is encapsulated in the opening quote to this post. Getting professionals involved in sexual research and medicine to agree on a definition of sexual dysfunction is like trying to herd cats. (Not to mention the fact that many professionals have neglected to involve their own patients’ feedback in the discussion – hint, hint!) We have an arbitrary definition spelled out by the well-known APA’s DSM, but in practice it’s more of a guideline than a hard set of rules, and there’s much it overlooks.

Different professionals may not agree with the DSM classification of sexual dysfunction for various reasons, and will come up with independent working definitions instead. These fractured definitons will reflect whatever agenda the professional(s) who developed it wish to spread and capitalize on. Different agendas may make some good points and thus be defensible, even when in direct conflict with one another.

I’ve seen examples of these contradictions illustrated before; One Ph.D. says porn addiction is a real thing that must be stopped, while another Ph.D. says there’s no such thing as sexual addiction, only sexual impulses. If both start sexual counseling clinics that reflect their views, then whose therapy the most appropriate? So in the end, sexual dysfunction remains a white-hot conflagration of controversy and disagreement – Looking at it pragmatically, to rephrase Dr. Binik, sexual dysfunction is whatever anyone wants it to be. You want it to be pain only? Boom, done. Wait, this other person wants sexual dysfunction to include lack of sexual arousal? Bam, here’s a phone number for a clinic you can call for that. Wait, this other person says all sexual dysfunction isn’t real at all? Boosh, here’s a whole lesson plan you can integrate into your gender studies program supporting that position. Even if some professionals manage to come to a stalemate and agree with each other on certain points, on others there will inevitably be disagreement.

I suppose this is the way science is supposed to work. Doctors and researchers are supposed to go back and forth at each other in order to find the correct answers to life’s big questions. It’s all part of the process.

But sometimes when I see these contradictory perspectives of sexual dysfunction, I get so frustrated! Then all I can do is think of the sexologists involved as chasing each other around, re-enacting the Yakety Sax scene from Benny Hill. Then I feel better:

(I couldn’t find the original Benny Hill chase scene in YouTube. Deal with it.)
[Description: Black-and-white chase scenes from Charlie Chaplin silent film, “The Tramp,” set to the fast-paced & wacky music, “Yakety Sax.” Charlie and co. generally cause mischief and misery to a team of cops trying to catch him and another character. Features running into some kind of fun-house boat with a hall of mirrors; Charlie and another character pretending to be animatronics in order to hide in plain sight from police, messing up a spinney Coney Island-era ride inside of a circus setting and general mayhem.] 

One interesting part of this debate is how it contrasts with the history of sexual dysfunction as presented by Dr. Tiefer in the chapter, “‘Female Sexual Dysfunction’: A New Disorder Invented for Women,” (quotations are hers not mine,) included in the anthology Sex is not a Natural Act. When she reported on sexual dysfunction conferences attended by medical professionals, she made it sound like a bunch of rich doctors all went in, bullshitted with each other, slept in the fanciest hotel suites, maybe bathed in goats milk and children’s tears, had a few drinks, and all agreed unanimously about a common definiton of FSD – a definition conveniently designed to line their own pockets. But instead, here, we’re seeing a much more lively & varied debate unfold.

Meanwhile, patients with sexual problems find varying levels of treatment and in some cases may be blocked from having sexual dysfunction treatments made available to them in the first place, whether that’s for safety reasons or purely political & idealogical ones. But its all in our best interests, right? …Right…?

On the other hand, I’m somewhat relieved that there isn’t a universal accord on sexual pain, precisely because that means there’s still a chance for patients to influence doctors along and get them to listen. But it’s a very slim chance – A notable omission in this debate is the involvement and perspective of patients. It’s possible that some participants in the debate themselves had experience with sexual pain, but judging from the credentials provided by the respondents, they were not answering as lay patients. These doctors talk to each other, but not to us; they talk about us, and that’s something disability advocates in particular have long recognized as a problem. Furthermore, the academic firewall helps reinforce doctors’ various levels of power over patients – I didn’t even know this debate happened until relatively recently. Then, I had difficulty researching it as someone no longer affiliated with an academic institution.

Other lessons include: Although sexual pain does not effect only women, it is still looked at as primarily a women’s issue. The most common reason I’ve seen cited for this is that sexual pain disproportionately impacts women. However, by focusing on women exclusively, professionals are probably hurting men and folks who do not fit onto a gender binary.

But as far as the original question goes: Should dyspareunia be classified as a pain or sex problem? Whether painful sex is best classified as a pain condition or as a sexual dysfunction, there is no final answer. Jury’s still out deliberating. Dr. Binik and commentators made good points defending their opinions, but no one budged from their original positions. There was no argument so logically perfect, it had the power to change minds.
Sorry gang, I don’t have an answer to this question.

Doctors debate dyspareunia part 3: Pain’s validity, con’t

08/24/2011 at 9:44 pm | Posted in Uncategorized | 2 Comments
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[We’re picking up this post directly where the last one left off, because it was getting too long. If you’re just joining us, we’re in the middle of a conversation about whether doctors think painful sex is best looked at as a pain problem or as a sex problem. Read part 1 here, and part 2 there. Stay tuned for the thrilling conclusion!]

In her response to Dr. Binik’s original article, Dr. Tiefer then goes on to acknowledge that dyspareunia is a surprisingly common experience. Dr. Tiefer says that sexual pain is deeply important to the feminist community: 

Beyond womens’ lack of sexual satisfaction or lack of orgasms, the common experience of pain during intercourse or vaginal penetration lies at the heart of the feminist critique of patriarchal sexual relations (e.g., Boston Women’s Health Collective, 1998, pp. 256-257) (51.)

*record scratch sound*

The heart of feminist critique of patriarchal sexual relations?

think in her citation, Dr. Tiefer is referring to an old version of Our Bodies, Ourselves. That’s The-capital-T Feminist Health Text Book put out every few years by the Boston Women’s Health Collective. It comes in different flavors, like one version for menopause and another for pregnancy, so I’m not certain which OBOS she’s referring to.

But…

Let me put it to you this way: I don’t know what’s on those two pages cited by Dr. Tiefer, because I no longer have a copy of OBOS. During my major life upheaval, I left it behind because it didn’t have anywhere near enough information on sexual pain. I remember about one page on vulvodynia, and there was a little bit about FSD in general – citing Dr. Tiefer’s work, in fact.
I was so disappointed at seeing little about sexual pain relative to chapters about pregnancy, sexuality, abortion, and other human rights issues, that I dumped OBOS. The Boston Women’s Health Collective let me down. I turned to other books, not specifically feminist ones, for more comprehensive information.

I don’t think there’s much support to the claim that vaginal or sexual pain lies at the heart of feminist critiques of patriarchal sex. Perhaps it’s just that feminist perspectives of patriarchial sex are a tiny niche, and so small that I miss them when scanning with my naked eye. After all, I often see feminist critiques of sex and sexuality generally, or I see critiques of patriarchal sex and rape culture that do not explicitly address the existence of unwanted physical pain.

But feminist perspectives on painful sex specifically are hard to find. I seek essays about vaginismus & vulvodynia in feminist-oriented traditional printed media on purpose. I have only just barely scratched the surface of a large feminist library, but it’s still pretty rare for me to find much about dyspareunia.
Online, I recall Twisty Faster’s post about vaginismus from a few years ago as a feminist perspective on patriarchial sex and a painful sexual problem – and even then, her post was more about treatment than about the experience of vaginismus itself. Every once in awhile I’ll find posts about sexual and genital pain on popular feminist sites, and I am eternally grateful when I receive guest posts that address the subject here. But big social justice & feminist sites have to keep up with all the other social-justice news too, and the pain posts get buried after awhile.

So to say that pain with sex or vaginal insertion lies at the heart of feminist critique of patriarchal sex is an exaggeration at best and bullshit at worst. It’s not there, not at the heart. It’s off to the side, maybe; on a good day you can see it poking out. Then it sees its shadow and bolts for another few months before making another appearance.

Anyway, back to the article. Dr. Tiefer then talks about how feminist sexologists have emphasized downplaying the centrality of penis-in-vagina intercourse as the end-all, beat-all form of sex – Dr. Marty Klein wrote an entire book about this, in fact. And then there’s a mention that sexual pain is implicitly (but for some reason not explicitly) covered by the World Association of Sexology’s Declaration of Sexual Rights (51.) For the record, I think the declaration document linked to in Dr. Tiefer’s original response has been updated since 2005. The URL changed to something else sometime in the last few years and the phrase “Sexual pain” does in fact appear in the body of the text (once.)

Towards the end of her response, Dr. Tiefer states that dyspareunia falls under the New View’s definition of a “Sexual problem,” whereas Dr. Binik’s view is that there is no special type of pain that applies only to sexual situations. (For example, in Dr. Binik’s view, vulvar vestibulitis is a primarily a pain problem rather than a sex problem, because you get the same pain during sex as you get during a routine gynecological exam.) According to Dr. Tiefer, even if sexual dysfunction as we know it were to be redefined or dropped from the DSM classification system altogether, pain during sex would still remain primarily a sexual problem that can be looked at from a social construction perspective –

We recommend that professional nomenclature dispense with the idea of norms and deviance… and move to a model wherein sexuality was viewed as a cultural construct and individuals could have various subjective or performance problems. Thus, sexual pain would be like swimming pain or swimming phobia, a problem that a person had with a desired behavior, not with some universal capacity (51, emphasis mine.)

Wait, what? “Swimming pain?” “Swimming phobia?”

Ironically I think comparing sexual pain to swimming pain strengthens Dr. Binik’s argument in favor of reclassifying dyspareunia as a pain condition – is there a special type of pain that kicks in only when swimming? Seriously, I’m asking because I’m not a doctor and I don’t know.

Swimming pain a vague term – are we referring to the pain of a muscle cramp, a broken limb, skin irritation from an over chlorinated pool, or swimmer’s ear? Plus, swimming doesn’t carry around the same gender, consent and relationship issues that sex does. (We could make an argument that swimming does carry performance issues, I suppose, especially when done professionally or in athletic competitions – but even then, I don’t think I’ve ever seen swimming activity stigmatized the same way I’ve seen sexual activity get turned into a problem in and of itself.)

I find the comparison of sexual pain to swimming phobia to be the more problematic half of Dr. Tiefer’s statement. I’ve come a long way from the time when I had a lot of fears and anxiety about sex. Somewhere along the line while puzzling sex out (and maybe while blogging about it,) some of the old fears started to slough & flake off. And at this point, It is no longer the act of sex that I fear. It’s the pain that I have come to expect if I try to engage in sex. So some folks who have experienced painful sex do have, or go on to develop, fear of sexual activity in and of itself. But now, years later, I’m still dealing with dyspareunia over here, not erotophobia or genophobia. I’m concerned that conflating sexual pain with sexual phobia will only complicate getting pain patients the comprehensive treatments they need the most.

Dr. Tiefer’s choice of words here was probably deliberate. This isn’t the first time she has compared avoiding sex and avoiding swimming:

Who’s to say, for example, that absence of interest in sex is abnormal according to the clinical definition? What sickness befalls the person who avoids sex? What disability? Clearly, such a person misses a life experience that some people value very highly and most value at least somewhat, but is avoiding sex “unhealthy” in the same way that avoiding protein is? Avoiding sex seems more akin to avoiding travel or avoiding swimming or avoiding invsetments in anything riskier than savings accounts – it’s not trendy, but it’s not sick, is it? (Sex is not a Natural Act, location 243).

Yet if a patient avoids sex due to dyspareunia, in that case it seems to be acceptable to view the avoidance as part of the sexual dysfunction that is painful sex. This is all very contradictory and confusing to me.

Dr. Tiefer ends her response to Dr. Binik by summarizing her position on the reclassification of dyspareunia: “As long as there are expert-based listings of sexual dysfunctions, we do women a disservice by failing to include pain as one of them,” but ideally she’d prefer to see classifications based on arbitrary norms dropped altogether (51.)

And that’s the way Dr. Tiefer’s response to Dr. Binik ends.

I find it disturbing that in spite of the New View’s probing explorations about how sexual dysfunction is arbitrarily defined in the DSM, in this response Dr. Tiefer felt it appropriate to make an artibrary decision about how to look at dyspareunia. Whereas in the past she has questioned whether or not disorders of desire and orgasm are truly a form of illness or disability, here, she made the unequivocal decision that sexual pain is in fact a sexual dysfunction.

I don’t know what to make of this contrast between Dr. Tiefer’s previous work and this article. Low sexual desire is not a disease… but feeling sexual pain is.
You are not sick if you can’t have an orgasm… but if your crotch hurts, then of course there’s something wrong with you. It’s normal and acceptable to go through periods of low sexual interest, especially if you’re tired… but if sex hurts, then that is not normal.

On the one hand, it makes some sense to me. Statistically, most people do not experience sexual pain – at least, not chronically, and not without some reason. In terms of raw numbers, it certainly is unusual to feel pain with most or every sexual encounter. And for me, personally, after careful consideration I view the pain I have as a sexual dysfunction.

But on the other hand, here I see a one-sided judgement about how normal my experience is, and by extension, how normal I may or may not be. If dyspareunia is recognized as a sexual dysfunction, then that’s an abnormality, isn’t it? So then, am I abnormal too? If so, what exactly am I supposed to do about it? Do I even have to do anything? What does it mean to have a feminist organization ask questions like, “Where are the women” in discussions of sexual dysfunction – and then have one leader of the organization declare what’s going on with women who have a certain type of sexual problem, without their feedback first? Where are the women, indeed – where are the women with sexual dysfunction when the doctors debate back and forth with each other?

When do the women with sexual dysfunction get a say? Dr. Tiefer does not speak for me; and I represent no one but myself.

By focusing on language, there are several dyspareunia issues Dr. Tiefer didn’t address. Practical questions like, if dyspareunia remains a sexual dysfunction, what treatments are appropriate to address it? Given the her criticism of the role of Big Pharma in marketing brand-name medications for other sexual problems, is it acceptable to offer oral pain medication as a treatment for this sexual problem? Or are pain medications and devices for sexual problems to be viewed as yet another tendril of dangerous, Big Bad Pharma? Is it appropriate to look at sexual pain as a relationship problem that exists only when trying to engage in partnered sexual activity, or is it a health problem in and of itself that exists independently of relationship status?

And it’s still not entirely clear to me which class of doctor Dr. Tiefer feels is best suited to handle complaints of sexual pain – If sexual pain is in the DSM, which various health professionals use, then does that make sexual pain a medical problem? Who should address it, medical doctors? Sexologists? Psychologists?

I don’t have the answers to these questions. I’m interested in the answers though, because in the end, I am someone directly effected by the decision makers. Ultimately it’s my health at stake in this debate. The decision of who is best equipped to address sexual pain will impact who I must seek out for assistance, what kind of help I can expect to receive, and how soon I can expect to see results, and how satisfactory results will be measured. It’s not an understatement to say that my future lies in their hands.

The debate about sexual pain didn’t end with Dr. Tiefer’s response, nor did it end with the other 20 or so articles generated by Dr. Binik’s 2005 discussion. Eventually Dr. Binik wrote up a conclusion in which he acknowledged & evaluated each reply. But an evaluation of his final answer on what to do about dyspareunia will have to wait until next time.

Doctors debate dyspareunia (painful sex)

08/01/2011 at 1:26 pm | Posted in Uncategorized | 7 Comments
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No one knows what to do with sexual pain.

If you have experienced long term sexual and/or genital pain, you’ve probably seen multiple doctors about it. You may have started with a general practitioner, who referred you to a gynecologist or urologist, who referred you to a sex therapist, who referred you to a pain specialist. There may have even been a dermatologist or psychatrist in there somewhere. And you may have noticed that each of these professions have their own ideas (or lack thereof) about how to best handle the situation. When getting refered to yet another doctor, you’re getting clued into who your current caregiver thinks is likely to have the most knowledge about treatments. (Of course, this assumes you have the health insurance and cash to cover medical treatments.)

But having been through the doctor shuffle already, I have come to the conclusion that no one really knows what to do with sexual pain.

Part of the reason chronic pelvic pain patients get bounced around so much is that, behind the scenes, doctors themselves are still debating how best to handle sexual and genital pain. Are we dealing with a chronic pain syndrome akin to something like back or neck pain? Or are we dealing with something purely sexual? A gynecologist may feel inadequately prepared to deal with long-term genital pain that doesn’t resolve following standard operating procedures. But when the pain takes place mostly during, or most acutely, during sexual activity, a pain specialist may think the problem is purely sexual – and some pain specialists may feel uncomfortable addressing unwanted pain during sex. Sexual dysfunction as we in the US know it is a relatively new and highly controversial area of study. And it will take time for doctors, scientists and philosophers to sort out the defining characteristics and treatments of dysfunction – if indeed such standards can ever be decided. It is the nature of science and medicine to go through revisions and changes.

I just wish these doctors and professionals would make up their minds already about which one of them I’m supposed to go to for treatment.

One such behind-the-scenes debate about the appropriate way to address sexual pain took place in early 2005, when Dr. Yitzchak M. Binik, Ph.D. wrote in to the peer-reviewed journal, Archives of Sexual Behavior. You can view an abstract of Dr. Binik’s piece, Should dyspareunia be retained as a sexual dysfunction in DSM-V? A painful classification decision here. If you want to learn more, you can view the full text on Dr. Binik’s website. (I can’t determine if what we’re going to look at today is considered an editorial piece, a study or a research review.)

So who is this guy? Dr. Binik is the director of Sex & Couple Therapy Service up at McGill University Hospital in Canada. He was one of the contributors to the textbook, Female Sexual Pain Disorders, (wrote the foreword) and he has written many articles about dyspareunia. According to his website, he’s also been involved with research on painful sex – there are three grant-funded projects listed as of 2011. But wait, there’s more – his whole resume is up for perusal.

At the time of Dr. Binik’s submission to the Archives of Sexual Behavior, dyspareunia (painful sex – usually when professionals say it, they mean “Cis-heterosexual intercourse,”) was classified as one of the four female sexual dysfunctions then-recognized by the DSM-IV. (The DSM-IV is the Diagnostic and Statistical Manual of Mental Disorders – basically it establishes guidelines for recognizing and treating various mental illnesses and disabilities. Professionals that rely on the DSM include psychologists and medical doctors. As of today a fifth revision to the manual is pending.) The other three sexual dysfunctions recognized by the text are arousal, libido and orgasm problems. Until then, there was not much debate among professionals who deal with dyspareunia about how appropriate its classification as a sexual dysfunction is.

Dr. Binik set out to challenge the classification of dyspareunia, with the goal of shifting it out of the sexual dysfunctions and into the pain category of mental disorders in the DSM. Reclassification of dyspareunia as a pain disorder instead of a sexual dysfunction would not remove it from the DSM completely – it would just move the problem around and give it a different name, grouping dyspareunia with any other pain while recognizing non-sexual pain in the crotch – such as the pain of a gynecological exam or attempted tampon insertion.

In Binik’s discussion of the history behind the term, “Dyspareunia,” he makes it sound like sexual pain was pretty much just thrown in with the other dysfunctions for lack of any better ideas at the time. But painful sex presents some unique problems compared to the other three sexual dysfunctions – after all, sexual pain frequently bleeds out into non-sexual areas of life. He talks about the differences between pain during sex (an act) vs. arousal or desire dysfunctions (physiological reactions,) and how dyspareunia is a broad term – to Binik, its breadth is a weakness instead of a strength.

There are several sexual dysfunction issues that Binik didn’t explore, and these omissions mean something. He did not challenge or question the existence or appropriateness of the term “Dysfunction” for any other sexual problem. He excluded a discussion of vaginismus, though this may be because vaginismus isn’t technically a dyspaerunia issue in the current DSM for some reason. (I’m not yet 100% clear on what the reason is for vaginismus to sit on it’s own tier of dysfunction; I think the folks behind the DSM fixated on how it prevents vaginal insertion of objects as the main feature, instead of the pain associated with attempts at insertion. This distinction is likely to change with the DSM-V.)

As examples to bolster his reclassification argument, Binik focuses almost exclusively on vulvar vestibulitis (VVS) patients – so he’s talking about people like me. Binik did not talk about dyspaerunia and endometriosis, or dyspareunia and interstitial cystitis, or dyspareunia and cancer. For this discussion, dyspareunia and VVS are used almost interchangeably… even though VVS is not the only cause and kind of painful sex.

I summarize Binik’s main agruments to move dyspareunia out of the sexual dysfuctions and into pain as:
1. Dyspareunia is similar to any other pain in self reports.  Genital pain is similar to other pain conditions when visualized using brain scans (pages 14, 16.)
2. There’s more research on pain. “By contrast, there is a relatively large literature onhow pain is represented in the brain (Casey & Bushnell,2000; Talbot et al., 1991).” (page 16.) So there’s more material to work with.
3. Treatment plans for sexual dysfunction don’t usually include pain management. If professionals take a pain perspective of dyspareunia, it opens up more complementary treatment options. That means potentially better outcomes for patients (page 18.)
(Unfortunately, Dr. Binik doesn’t address this – it also means more anxiety about seeking treatment in the first place, since pain management can include oral medications – and certain feminist anti-FSD activists in particular and bootstrapists in general dedicate extensive resources to opposing medication for sexual and health problems. Just think of all those sensationalist news stories about celebrities becoming addicted to pain pills.)
4. Socially, pain is a more dignified, less controversial subject than sex – “Finally, as a seeker of research funding, I have noted that there have been several recent new governmental funding initiatives for pain related to dyspareunia (see National Institute of ChildHealth and Development, 2000). As far as I know, this is not being matched in the sexuality area where funding is constantly under attack” (page 19.) This is an unfortunate reflection of how sexual issues are downplayed and sneered at by the public. It’s just easier to get funding, research and respect if you’re exploring pain than it is if you’re exploring sex.

Judging from the passionate responses included with the same issue of Archives of Sexual Behavior, Binik’s article was quite controversial at the time. There were at least 21 responses, plus however many other e-mails and memos were written up and sent around but didn’t get published. Eventually Binik wrote a follow-up statement in response to professional criticism, which I’d like to look at with you later.

My biggest schtick with Binik’s article and the responses is: I honestly don’t get why this has to be an either/or question. 
I’m saying this as a patient: This isn’t a simple either-or issue. Dyspareunia isn’t something that fits neatly into a single box. Try to stick it in the sex box, and the pain stuff will still leak out into every day life. Try to place it exclusively in the pain box, and sexual problems will jump in. You can have pain AND another sexual dysfunction, like problems with arousal or orgasm.
If you ask me, pain in the genitals should be recognized as both a pain and sexual problem. For some patients, it may very well fit neatly into only one category. But whatever professional field is assigned as having the final say on the best way to treat dyspareunia – you need to be prepared to go outside of your own comfort zone, in order to bring me the comfort I need.

Unfortunately my perspective as a patient isn’t given much value. Just the location of publication presents a problem – the insular nature of being part of a peer-reviewed journal itself acts like a firewall to keep out non-professionals and non-academics. Which means ordinary folks probably don’t even get a chance to find out when debates like this happen, and we probably won’t be solicited for feedback. These debates excluded most women with FSD from participating.

It’s a bummer, too, since I got more to say about this article, which I’ll spell out here instead.

A major weakness of Binik’s argument and one that Binik had to address in a later, separate response, is that he did not really consider the sexual part of sexual pain.
Like it or not, pain in the genitals takes on a different meaning than pain in the arm or neck. And no it’s not fair, I think it sucks that it is socially unacceptable to say, “My vulva/penis/clitoris hurts today.” Not that its easy to talk about chronic pain to begin with though! Non-sexual, non-genital pain still gets heaps of stigma and able-bodied folks going, “Deal with it.” But right now, in the US at least, genitals are all tied up with issues of gender, identity and performance. So looking at dyspareunia exclusively as a pain problem won’t address the ways in which pain can impact sexuality. Even if the pain resolves satisfactorily, dyspareunia patients may still have to deal with long-term insecurity and body memories. If other dysfunctions like difficulty or loss of orgasm have gotten tied in with the pain, then those non-painful problems may not resolve at the same time as pain. To ignore the sexual component of genital pain, to the extent that it is present, is inadequate.

ON THE OTHER HAND, for some folks, skipping the sex part and addressing the pain is exactly what’s needed. This was actually more the case for me – what I needed the most when I went through the most intense period of genital pain and treatment wasn’t sex therapy or a better understanding of social construction. Gender roles and patriarchy, as much as they do hinder me in many other ways, did not reach inside of my body and cause my cells to rebel. What I needed most was something to address the physical pain and discomfort.
That urgent need is lessened now, but it’s not completely gone and it will probably never go away completely. So I remain open to medicine in my sex life now and in the future.

Now, of all the people who wrote in, who do you think would have been the most likely to agree that dyspareunia should not be classified as a sexual dysfunction? I’ll give you a hint: After all, sexual dysfunction is a controversial term – part of the resistance against it stems from concern that the medical industry will throw around the term to convince able-bodied women that they have physical problems, thus increasing sales of medications and devices to address it. Who’s to say whether a libido is low in the first place, and how exactly are we supposed to measure such a subjective experience?

So I was shocked, absolutely shocked, to see Dr. Leonore Tiefer, Ph.D., organizer behind The New View Campaign, sex therapist, educator, author and editor, write a negative response to Dr. Binik’s proposition. You may remember Dr. Tiefer from such posts as a 5-part series on Sex is not a Natural Act and A Review of A New View of Women’s Sexuality. You may also recognize her name from prolific writing on feminism, social construction and female sexual dysfunction. Dr. Tiefer is a critic of female sexual dysfunction, particularly the way it is handled by organizers of the DSM and its end-users (the end users being doctors and other professionals.)

So if, in other cases, Dr. Tiefer supports the view that female sexual dysfunction is a myth manufactured by medicine (even if she herself is careful to avoid using that exact phrasing,) then what’s she doing getting involved with the reality of dyspareunia?

To be continued…

Guest post: The Sexual Subject

03/09/2011 at 4:46 pm | Posted in Uncategorized | 3 Comments
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[Dear internet, we have a guest poster today! The following was written by Elaine F. Bayless:

Elaine F. Bayless is an author and pastor who lives in Raleigh, NC. She is currently working on a memoir about her experience with pelvic floor dysfunction. After choosing to have surgery to correct her issues, she is happy to report that most of the dysfunction is resolved. She and her husband are expecting their first child in July of this year. For more information about Elaine’s published work and her writing process, visit her blog http://elainefbayless.blogspot.com]

I am one of the lucky ones. I only saw three gynecologists who ignored my vaginismus. I only wasted 9 months of my marriage in therapy, convinced that my pain was psychological. My husband never forced me into sex, never punished me for my condition. It only took me six years of treatment to finally find resolution in the form of penetration concomitant with orgasm – MY orgasm.

In November 2010, Discover magazine’s column, Vital Signs, discussed an intern who missed the symptom of painful intercourse. When the doctor asked him about this symptom, he admitted that he thought all women found sex painful. This doctor was shocked to discover this attitude in an “educated” person. I’m not shocked.

Women just don’t enjoy sex that much. That’s the pervasive belief in our society. And women who do enjoy sex are often penalized. We aren’t supposed to enjoy it, after all. We are supposed to be enjoyed. We are objects, not subjects. I still remember vividly an encounter in my recent past, when I had multiple orgasms and my husband had none. I was apologetic! But he had no regrets. He simply smiled and said he was glad I enjoyed myself. He’s a true man, someone who understands that sex is a two-way activity, an encounter between two participants, not between a subject and object. How does this belief play into the diagnosis and treatment of dyspareunia? In every way. My own story serves to illustrate it.

I had my first Pap smear at age 18. I was a virgin, but irregular periods plagued me and so I wanted to go on the Pill. The exam was torture, but every year I went back. My gynecologist was unconcerned, blaming me for not relaxing. She never gave me any tips on how to relax, never suggested anything to try to make things less painful, even when I almost passed out from the pain. My gynecological history post college was sporadic. Still a virgin, I went on and off the Pill, only getting a couple of Pap smears. Each time it was excruciating. I didn’t use tampons – too painful. But I kept that a secret. My doctors assumed that I didn’t enjoy insertion because I wouldn’t relax – that it was my fault, not something beyond my control. After all, women don’t enjoy sex, why would they enjoy an exam?

Prior to my marriage, I went to a friend’s gynecologist, highly recommended. I shared with her my pain issues. I asked her specifically to determine whether there were any reason why sex would hurt (I was still a virgin). This was her chance – her opening to discuss dyspareunia with me, to talk about different causes for pain in the vagina. Surely my medical history, my fear of tampons, and my simple reaction to the exam should have clued her in. She told me to relax because there was nothing wrong with me.

Why did this doctor not even mention the possibility of actual physical conditions that could cause pain during intercourse? Why did she assume that after 11 years of pain during vaginal exams I would be able to relax? I guess she figured I would learn how to grin and bear it, like many women do.

Because of her bad advice, I went to see a therapist immediately after my honeymoon, convinced I was mentally screwed up. After all, physically I was fine, right? When my prescription for the Pill ran out, I went to see a new doctor, a nurse-practitioner who specialized in seeing rape victims. I knew she would be sympathetic. She gave me a tranquilizer to take prior to the exam. It did nothing – my blood pressure was through the roof and I winced at the moment of first contact. And that wonderful woman sat back and told me I needed to see a physical therapist.

The discovery that there actually was something physically wrong with me – that I was incapable of relaxing – that was a turning point in my entire life. I had never heard of vaginismus, vulvar vestibulitis, dysparaunia, etc. I didn’t know that walking around with a constant Kegel was abnormal. (To this day I still catch myself in “locked and loaded” position). Finally I was able to clear the self-blame and self-doubt that was tormenting me and my marriage. I had a physical problem!

I still listen to women who have bought into the lie that we don’t enjoy sex. They say that their vaginas are too small. They say that they don’t enjoy orgasm. They continue to engage in sex that is unfulfilling. I was teaching a group of high schoolers about sex and counseled them to stop having intercourse if it hurt. They all looked at me blankly and then asked why. I was horrified.

We are not sexual objects. We are sexual subjects. I am currently pregnant with my first child, a little girl. A girl conceived during pretty fantastic, orgasmic sex. (Sure, it took 6 years, 3 physical therapists, and surgery, but it was WORTH it). And one of the most important things I hope to teach her is that sex feels good. And if it doesn’t feel good, she will have to be her own advocate and work tirelessly to find the cause and the solution. I hope that the world will have changed somewhat by then – that the medical establishment will have a better understanding of sex as something that is designed to be enjoyable. For anyone.

For (belated) Lady Porn Day: What are the experts saying?

02/26/2011 at 7:39 pm | Posted in Uncategorized | 9 Comments
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February 22 was Lady Porn Day, a blogging event organized by Rachel Rabbit Write. This is the same blogger who, last year, organized “No makeup week.” In this case, “Day” is something of a misnomer, as today is actually the last day of the week-long Lady Porn event. (A good thing, too, considering my recent writer’s block.) In an interview with the Huffington Post, Write said the purpose of Lady Porn Day was to, “Essentially to celebrate porn and masturbation. I’m inviting everyone to talk about their porn experiences, share stories and to ultimately share their porn recommendations. This is about not only opening up a dialog about how porn is good, but also how porn is hard, how it can be an issue for women, in terms of dealing with guilt or body image or their sexuality.”

What’s been on my mind for awhile and has finally been knocked loose by this event is the subject of pornography and sex therapy. I’ve been thinking about this topic because I’m seeing a conflict between sex therapists who embrace pornography as a healthy & valid part of human sexuality vs. those who view it as the source of all kinds of sexual problems. Sex therapy is a possible treatment option for some folks with sexual dysfunctions and problems, so clients could find themselves in the middle of a political, academic & psychological tug-of-war between experts.
I’ll show you what I’m talking about, but with a caveat: you must bear in mind that I myself have not had sex therapy and I have absolutely no desire to do so, to the point where I’m actually quite resistant to sex therapy as a treatment for my dysfunction.

Whether or not sex therapists and sex educators are pro-porn or anti-porn looks to me like it’s largely a function of their own personal politics.

Notable sex educators who have articulated porn-positive arguments include the following:

Dr. Marty Klein is a long-term sex therapist and author who is very much anti-censorship and who consistently defends the use of pornography. He does identify as feminist and is clearly pro-choice; however one theme I’ve noticed in some of Klein’s writing is that he is critical of feminism – or at least, select vocal feminists and feminist groups. Oh well, so am I.
Dr. Leonore Tiefer, a feminist sexologist who is highly critical of female sexual dysfunction and so spearheaded the New View perspective of FSD (a perspective which I myself am highly critical of,) likewise recognizes a valid place for pornography in women’s sexuality.
Jessi Fischer is a sex educator who you may know better as The Sexademic. She recently got into an academic debate about pornography, opposite Gail Dines and Shelley Lubben – two notable anti-porn activists. (Each side of the debate was joined by additional activists, so it wasn’t just Fischer Vs. Dines & Lubben.) The pro-porn side of the debate came out on top – the audience members voted on who made the more convincing argument and decided it was Fischer’s team.
Dr. Carol Queen, sex educator with GoodVibes, wrote a post in favor of porn and Lady Porn Day – which makes sense considering her involvement with instructional & graphic sex videos. Most porn is not for educational purposes, but there’s some out there that is.

Nonetheless, porn-positive activists can be critical of porn. Pornography can, and often does, have problems. Criticisms of porn from sex-positive therapists may consist of something like, “This element is good, that element is neutral, and if you will look over there there, there is the element is the inherently problematic one that needs fixing.” And the element that needs fixing may be something like, the marketing of porn rather than the content itself. A great example of this took place a few weeks ago when actress Nicki Blue elected to film her first vaginal intercourse experience for the pornographic website, kink.com. The initial marketing for Blue’s film shoot was highly exploitative and inaccurate.

But I’ve seen activists, educators and licensed therapists go in the opposite direction too, and come down hard against pornography. Often this stance against pornography is lumped with a warning against sex and masturbation addiction – which is another extremely controversial topic. However, I’ve repeatedly seen more acceptance of the term “Compulsion” instead of “addiction” to describe obsessive sexual behaviors, to the point where such behaviors interfere with someone’s personal or sexual life.

Dr. Mary Anne Layden is a clinical psychotherapist and Director of Education at the Center for Cognitive Therapy, part of the University of Pennsylvania. In 2004, she went before the US Senate to talk about the so-called dangers of pornography. In another interview with the Washington Examiner, she talked about the process of becoming addicted to porn when she said, “There’s always an escalation process. We don’t know what the threshold is, and those with addictive personalities will start it earlier. But I see a lot of people who didn’t show any psychological problems before [viewing porn].”
Jason McClain is a UK therapist who considers himself to be a former porn addict. He runs an organization, Quit Porn Addiction, and now he counsels clients who likewise want to break away from porn.
Dr. Alvin Cooper is a sex therapist and director of the San Jose Marital & Sexuality Center who contributed to a documentary, A Drug Called Pornography. According to the linked synopsis, this film’s thesis is that, “Pornography is an addiction. Its effects on users and their loved ones are just as habit-forming and destructive as heroin, tobacco, or any other addictive agent… The program features disturbing interviews with pornography addicts, many of whom are convicted sex offenders. They talk frankly about how pornography affects their psyches and systems, coloring all their activities and relationships.” And according to this Time article, Cooper also gives seminars about addiction to cybersex.

In addition, Googling search terms such as, “Sex therapy addiction” or “Sex therapy porn” brought up many, many more results for therapists and organizations that prominently feature treating sex and masturbation addiction among their services.

I am confounded, though not surprised, to see that sexuality experts with licenses, teaching jobs and more credibility than me have not come to a unified agreement on porn’s place in sex therapy. It’s not surprising that sex therapists haven’t come to a standard approach on how to deal with pornography, because there’s precedent for a lack of resolution: Pro-and-anti- porn debates in politics, academia and feminism remain unsettled.
But it is confounding, because who am I supposed to believe, and why?

Actually, I have been convinced by the arguments of the porn-positive side. I especially appreciated Violet Blue’s analysis of the for-profit agenda of major anti-porn activists. This analysis, and others like it, also note that anti-porn rhetoric is also often anti-masturbation – a healthy sexual activity. There are numerous other arguments in favor of pornography that I have heard which have contributed to my “Up with porn” POV… the only reason I’m not getting into them right now is because it will take too long to document everything.
Though I’ll also admit that most porn has problems which could and should be handled better (but won’t,) and, like just about any other tool, it can be used for the forces of good or for evil… and everything in between.
(Plus I’ll admit to some potential bias – I have a subscription to a porn site which I regularly check on. I have not noticed any ill effects from doing so…)

So there’s a couple of scenarios with regard to porn use that I envision as potential problems in a sex therapy setting. While I have no experience with sex therapy myself, I nonetheless speculate that these scenarios have probably come up before many, many times in clinical practice. So I would be surprised if practicing therapists and educators didn’t have tools in place to address such situations. How could such conflicts not come up?
The problem is, because so many google search results for “Sex therapy addiction” or “Sex therapy porn” result in facilities looking to treat addiction to porn & masturbation, I am not able to find out what these client-therapist conflict-resolving tools may be. The search results are too bogged down with stuff I’m not looking for. (Little help? Anyone?)

One of my concerns is with regard to pornography and sex therapy is that if you’re entering into a therapeutic relationship with a licensed professional, there’s inherently going to be a power imbalance. The therapist has probably had more exposure to educational materials, which may have their own biases & agendas. You and your therapist are probably going into that relationship with some ideas about pornography to begin with. If there’s a match between your beliefs and your therapist’s, then in terms of personality you may not have a problem, and you may be able to swiftly work out a plan of action. But if you and your therapist have conflicting beliefs about pornography as a tool in your sexuality, then you may have a problem.

So what happens if you are someone with a sexual problem or dysfunction who just happens to have a history of porn use? If you find a sex therapist who is anti-porn, will your previous or current use be zoomed in on as the source of your problems to the exclusion of other contributing factors?

Or what happens if, due to the conflict between you and your therapist re: use of porn in sexuality, you decide to find another therapist? That may be possible, depending on your geographic location. Finding a good therapist may take time and transportation, depending on where you live and what sort of resources are available in your area. Checking my own local area via the American Association of Sexuality Educators and Certified Therapists, I was surprised to find one licensed sex therapist! The next “Local” one, though, would be about 45 minutes away by car – not exactly the worst commute, but certainly not convenient, either. Finding Kink-aware therapists may be another option.
I’d like to imagine that sex therapy may be easier to provide now and in the future though, thanks to technology like Skype, though this is speculation – I do not know if there are any therapists willing to use this remote communication service with clients. But,  hypothetically, if I were very unlucky, then I might be stuck with a therapist I don’t agree with, or no therapist at all.

Basically, for Lady Porn Day, like many bloggers my concern is what happens to the porn users and their partners who are stuck in the middle of it all. This conflict between professionals is unlikely to be resolved  any time soon. The most neutral article about porn use in a relationship was this one from About.com, which says, in the end, “Whether or not pornography will add to or lessen a couple’s sexual enjoyment is up to each couple.”

Vulvar pain in women of color

02/01/2011 at 1:59 pm | Posted in Uncategorized | 2 Comments
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This was cross-posted to Womanist Musings.

For the purposes of this post today, I will be focusing on vulvodynia; however keep in mind that there are other causes of chronic pelvic and sexual pain; likewise there are serious sexual problems besides pain which also deserve attention.

Vulvodynia is a syndrome, a collection of symptoms, centered around chronic vulvar pain, lasting longer than 3 to 6 months. Pain (commonly described as burning, stinging, stabbing, rawness and/or irritation,) may occur in the vulvar vestibule, mons, urethral opening, labia, clitoris, or elsewhere in the vulvar area. Not all instances of vulvar pain are vulvodynia, and for some women vulvar pain may resolve on its own.

Vulvodynia does not have one universal cause; some possible causes include injury, sensitivity to vulvar microorganisms (like yeast,) hormonal changes, muscular problems, etc., though for some folks the cause will remain unknown. For some women, vulvar pain is caused by pudendal neuralgia or pudendal nerve entrapment. Everyone is different, so some women experience pain all the time without provocation while others experience pain only when attempting to insert something vaginally. Likewise, for some women, it is still possible to enjoy sexual activity even with vulvodynia, while for others sex will become too painful to engage in. There are a number of treatments available for vulvodynia, but no single cure, so women with vulvar pain may have to burn through multiple doctors and treatments before finding the right one.

Who develops vulvar pain? I have seen several sources which present similar estimates as to how many women experience vulvar pain at some point during their life – at least, in the United States. According to one 1991 study, about 15% of 210 patients attending a gynecology clinic met the criteria for a diagnosis of vulvar vestibulitis. According to a 2002 release from the National Institutes of Health, about 16% of over 3,000 survey respondents reported chronic vulvar pain. (More on this figure in a bit.) The raw numbers seem to vary more; this same NIH release estimates that up to 14 million US women will experience vulvodynia at some point during their lives, whereas media coverage such as the Dr. Oz show estimate that there’s about 6 million US women currently living with vulvodynia. One thing all these studies agree on is that chronic vulvar pain, while not experienced by a majority of women, certainly isn’t rare either.

However, for a long time, I thought that women of color developed vulvar pain like vulvodynia less frequently than white women. I believed this, because I saw such statements in books, I saw it in studies, I saw it in the media and I went along with it. I realize now that I was completely and totally wrong. Vulvar and sexual pain does NOT just effect white women and in fact the rates of pelvic pain in white and nonwhite women is similar. But how many people still don’t know about vulvar pain in women of color? How many doctors and gynecologists are, like I was, under the impression that their nonwhite patients rarely experience nameable vulvar pain conditions which have treatment options available?

Here’s why I was wrong and why you too should care about women of color and chronic pelvic pain:

One of the first resources I picked up when I started looking for treatments was Dr. Howard Glazer’s The Vulvodynia Survival Guide, which is all about vulvodynia. Here’s what Glazer’s book said about vulvar pain and women of color…

“For unknown reasons, African-American women as a group are the least likely to report vulvar dysesthesia, or any other type of vulvodynia” (Glazer, 19). And “Again, Caucasian women have vestibultis [a specific, localized type of vulvar pain -K] more than any other racial group (Marinoff and Turner, 1992).” (Glazer, 23).

It goes on. In the late 1990s, early 2000s, Glazer organized a survey of women with vulvodynia though his website, vulvodynia.com, and in his book he reported that 90% of the survey respondents were Caucasian; “Less than 1 percent were of African origin” (33.) Additionally, it’s worth noting here that according to this same survey, participants’ “Socioeconomic status was higher than average; 62% reported incomes greater than $50,000” (33,) and the majority also held “professional, managerial occupations,” and “59% had completed college” (33.) Glazer cautions, “The higher levels of socioeconomic, education, and occupation status is consistent with previous studies. Why? Unfortunately, it’s probably because educated women with access to money for medical care are the most likely to pursue the best, most sophisticated medical treatments (or at least to use the Internet” (33.)

But who is also the most likely group to be in the higher socioeconomic class and have a high level of education, and be in a better financial position to use technology and seek medical care? White people, in the US. Because of this, the design of Glazer’s study itself most likely skewed the results to exclude women of color. However, he went on to state,

Caucasian women reported more vulvar pain than any other ethnic group. African-American wome rarely report these conditions. Researchers aren’t sure why this is true, though it has been commonly observed by many of our colleagues in the International Society for the Study of Vulvovaginal Disease, who practice and teach in various medical settings where women of various races and incomes are seen. Other dark-skinned ethnic groups, such as Indians, do report chronic vulvar pain syndromes (33).

Hmmm, Glazer sure spent a lot of time driving home his point that black women don’t report vulvar pain frequently and that white women do.

But wait, there’s more. The results of an oft-cited but highly controversial, hotly contested study of sexual dysfunction in the US, Sexual Dysfunction in the United States, also stated that black and hispanic women were less likely to report dyspareunia,

The association between race and ethnicity and sexual problems is more variable. Black women tend to have higher rates of low sexual desire and experience less pleasure compared with white women, who are more likely to have sexual pain than black women. Hispanic women, in contrast, consistently report lower rates of sexual problems. (Laumann et al, online).

Additionally, media coverage of vulvar pain frequently reinforces the idea that it’s mostly white women who experience vulvar pain. Stock photos and illustrations that accompany books and articles about vulvar and sexual pain overwhelmingly feature white women. (See for examples, here, here and here – I could easily go on!) The erasure of women of color with pelvic pain and dyspareunia happens on television too, with a few exceptions; for example in 2008 the television show Oprah explicitly reached out to women of color in an e-mail requesting participants willing to talk about vulvar pain. Alas, to this day, although filming has been completed, that episode has not aired on tv. Another exception took place in 2010 on the Dr. Oz program, which ran a segment on vulvodynia. The original 8-minute segment included a guest woman of color who briefly commented on life with the pain condition (unfortunately the second half of this segment has been excised from the online video.)

However, the prevalence of vulvar pain among women of color may have been understated. The study which the NIH release above references is, A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia? The abstract contains this critical line: “Contrary to earlier clinical assessments, white and African American women reported similar lifetime prevalences. However, Hispanic women were 80% more likely to experience chronic vulvar pain than were white and African American women” (Harlow and Stewart). Harlow & Stewart’s survey is no fluke; the WebMD article Vulvar Pain isn’t so Rare refers to a University of Michigan study published in the 2004 Journal of Lower Genital Tract Disease, “Although previous reports show the condition is rare among black women, the responses indicated that this is not the case. Black women had similar rates of vulvar pain as women of other races.” (Reed, online).

And as for Dr. Glazer’s claim that women of African descent rarely report pain outside of US settings? Even that has been challenged! In 2005, a study in the Journal of Reproductive Medicine revealed that 22.8% of women attending a general medical clinic in Ghana reported vulvar pain, which was linked to sexual dissatisfaction.

I am certain that effect of emphasizing white women’s reported rates of vulvar pain over that of women of color is silencing to this day. So what’s being done to address this revision in what caregivers should know about vulvodynia?  The NVA’s fact sheet on vulvodynia now reflects that nonwhite women are just as likely as white women to develop vulvodynia. The language explicitly shows a change of perspective, from vulvodynia being thought of as primarily a Caucasian women’s issue to much broader. An NVA newsletter, Faces of Vulvodynia, included identifiable women of color like Karen, Yamalis, Amanda, Michele and Emily, who are willing to be interviewed by the media.

Unfortunately vulvodynia remains difficult to diagnose and it doesn’t help that some doctors remain ignorant of its very existence. Even doctors who do know about vulvar pain conditions may not be up do date with all the research. And doctors who are well-trained to address chronic pelvic and genital pain may be too far out of reach for many patients, both in terms of money and geographical distance. Genital and sexual pain received some media attention in 2010 but it still remains very much a taboo subject, and it is the butt of crude jokes surprisingly often. Society, guided by the long tendrils of patriarchy, pushes women to learn how to please men sexually, and so there is also pressure to perform sexual activity – even if it hurts. It shouldn’t have to be that way. And the quality of sex education is highly variable – I recall my own sex education lacked any mention of pain other than what happens when the hymen is broken.

If you or someone you love is experiencing chronic vulvar and/or sexual pain, some resources available online include the NVA in the US or the ISSVD internationally. A short list of some available treatments is available from the Mayo Clinic’s site.

Guest post – Update from a guest poster

01/27/2011 at 11:11 pm | Posted in Uncategorized | 3 Comments
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[Dear internet, we have a guest poster today! Rhiannon was the first guest poster we ever had here on Feminists with Female Sexual Dysfunction. It’s been a little over a year since her first post with us, and she has volunteered to share a follow-up of what’s been happening with her vulvar pain since then. The following account comes with a trigger warning though, for invasive medical procedures and brief mention of self-harm.]

The wisdom – or not – of pursuing medical options

A lot has happened since my last post. I spent most of the year celibate, trying to embrace that as a queer identify, and not really getting there; in September, I began a triad relationship with a man and a woman who were a couple. It has all fallen apart now, but my relationship with the man folded first, and a big part of that was that we couldn’t have sex.

When I told my GP this, she asked whether I was in treatment for the vulvodynia. I said I wasn’t, and explained how grim the treatment options had seemed before. She suggested that I could get a second opinion.

“Can’t hurt,” I said. I was wrong.

Now, going to the gynaecologist to have your vulvodynia examined is always going to be at least a little painful, because the chief symptom is pain and they have to cause a little in order to see where it is. The classic way of doing this is the cotton-bud test – a controlled and relatively gentle touch to the painful area to confirm its location. I know because I’ve had it done several times in the past.

Apparently this consultant hadn’t heard of it.

I had my history taken by a relatively nice registrar, and I thought that if she examined me it would be okay. Once she’d taken my history, though, she said she had to fetch the consultant because she’d never seen this before – fair enough, nobody can know everything – and I should get ready and wait on the bed. A nurse came in and talked me through the need to take my knickers off and pull my skirt up (and cover the tops of my thighs with that silly little piece of paper they always use… what purpose is that supposed to serve?).

The consultant appeared. He was a big black man who didn’t speak directly to me, just found his gloves and went to have a peer and a poke. I am aware that my prejudices could be showing here; I think that I would have found the behaviour rude in a white doctor or a female doctor, or indeed a shorter doctor, but I might not have been as frightened by it.

My Bartholin’s glands are visibly inflamed, and most doctors see that. I don’t think he noticed them, although I had mentioned that specifically when my history was taken by the registrar; he certainly didn’t try and avoid touching them. I have been examined many times, and it’s never comfortable, but this was very painful. It was as painful as penetrative sex is, in fact.

I gasped and cried out, I nearly screamed, and it must have been obvious because the nurse felt the need to hold my hand.

Afterwards, I was shaking and in tears. I was left alone to get dressed again – I managed to calm down by one of my milder self-harming methods. After what seemed like a long wait, the consultant and registrar returned with what appears to be a hurried print-out of some basic information (I suspect I know which website they used).

“I’ve never seen anything like this before,” the consultant told me. “I’m going to have to ask around and see who I can refer you to.” They said that; the referral letter hasn’t arrived a month later, and if the new consultant will be anything like this one I shall have to think twice about going.

They left me alone with the nurse, who checked I was okay and had one last piece of final ironic advice: “Don’t go looking at the internet and scaring yourself.”

I was too shaken to tell her that the internet is the only place I’ve found comfort in facing vulvodynia.

Conceptualizing the FSD hierarchy

01/12/2011 at 12:04 am | Posted in Uncategorized | 8 Comments
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A couple of times on this blog, I and guest posters have briefly mentioned something called the female sexual dysfunction hierarchy. This is an idea that formed in my mind while reading various interpretations of  female sexual dysfunction – I noticed that not all forms of FSD were handled equally in terms of social (and professional) acceptance and priority for treatments. But what is the FSD hierarchy, exactly? What do we mean when we talk about it? Let’s think about it and see what we can come up with.

To me, the FSD hierarchy means that certain types of sexual problems are more readily recognized as sexual dysfunctions than others, and are given a higher priority for treatment by doctors and therapists. It means that if you have some sexual dysfunctions that are not recognized as serious and real you’re more likely to have to present some reason, a justification, for the dysfunction to exist in the first place and you may face barriers to satisfactory resolution. Conversely, the FSD hierarchy means that other types of sexual dysfunctions are more readily recognized as valid health problems for which medical treatment (and insurance reimbursement) is more likely to be available and socially acceptable.
It’s not that all forms of FSD can or should be treated with a single magic bullet. Different types of FSD need different treatment options, including the option to not treat at all. A woman with low libido may not require a pain management program and a woman dealing with orgasm difficulties may already have an otherwise high sex drive. However, what the hierarchy does is prioritize some women’s personal experiences and feelings with regard to sexual dysfunction, but it dismisses others.
Basically you get shit about having certain types of FSD but not others. The hierarchy does not necessarily mean that women with any form of FSD will be treated the way as they should be – that is, with respect and dignity.

Ultimately, I think it means that some sexual dysfunctions are “Okay” to have and treat, while others are not okay to have or to view as dysfunctions, regardless of how much a sexual problem is interfering with your life. I believe that a hierarchy of FSD is something that both medicine and social construction contribute to.

And I don’t like it. No sir, I don’t like it.

I hate the hierarchy of sexual dysfunction. It isn’t fair. It’s artificial and hegemonic; it compartmentalizes different types of sexual dysfunction, so you lose a chance explore overlap. Coupled with the stigma of having FSD in the first place, keeps women with sexual problems broadly from sharing experiences with one another. Unfortunately the hierarchy of FSD in and of itself adds to the stigma – since some kinds of FSD aren’t valid in the first place, it’s hip to make fun of anyone who thinks they have sex problems.

Medicine is rigid in defining what is recognized as FSD. Generally, under the medical model of FSD, (hotly contested and informed by the DSM) there are four broad categories of sexual dysfunction – pain, lack of arousal, lack of orgasm/pleasure, and/or a low or absent libido (sexual desire.) To this day, as evidenced by the JAMA study citing a 43% prevalence rate of FSD in the US, a sexual problem may be considered to cross the threshold into “Dysfunction” regardless of the feedback of the individual. To ignore a patient’s personal feelings is a problem in and of itself, for it’s fairly common to experience snafu sexually from time to time. And even if you do experience what might be considered a “Problem,” if you are comfortable with that, then it’s less of a problem in the first place.

The social construction model, particularly the New View model of women’s sexuality, is looser in recognizing sexual problems and their causes, but stricter in defining limits for the term dysfunction.  Stricter limits on the use of the term sexual dysfunction are called for because of a long history of abuse at the hands of those who had the authority to dispense with such terminology in the past. Additionally, sexual dysfunction is stigmatized and so a diagnosis of FSD can in and of itself create anxiety – you lose your status as a “Normal” person, sexually. (If you ask me, it makes more sense to take out the sting of sexual dysfunction in the first place rather than to elevate TAB status to its position of privilege. There’s nothing wrong with having a sexual problem, so, what’s wrong with having sexual dysfunction?)

Here’s a picture of what I think the FSD hierarchy looks like. I whipped this up in Excel so the graphic is Butt-Ugly. My hierarchy is based on the four broad medical categories of FSD, because that’s how I most often  see sexual dysfunction talked about. That medical model of sexual dysfunction certainly does have a long reach. What does the FSD hierarchy mean to you, and how would you describe it?

[Description: The sexual dysfunction hierarchy pyramid, version 1.0. A 4-tier pyramid sitting on top of a brown rectangle. Each tier in the pyramid is a different color and labeled, in descending order, “Pain,” “lack of arousal,” “lack of pleasure/orgasm,” and “low/absent libido.” Caption next to the pain tier says, “Pain is generally recognized as valid. May be considered a pain condition, disability and/or sexual dysfunction (depending on the individual with pain and who you ask about it).” Caption next to the lack of arousal tier says, “can sometimes be a problem may be addressed with lubricants or medications ED in cis men usually recognized more readily”. Caption next to the lack of pleasure/orgasm tier says, “Starting to get controversial as sexual dysfunctions now since these problems may be social, physiological or both”. Caption next to the low/absent sexual desire tier says, “The illegitimate child of FSD Desire, libido, HSDD – all highly contested Is it a dysfunction or just part of your personality?”. The rectangle under the pyramid is supposed to represent underground and it’s labeled “PGAD, Endometriosis, Overlap and Intersectonality, Stuff I forgot about, Interstitial Cystitis and Stuff I hadn’t thought of.”] Caption next to the rectangle says, “Stuff underneath the pyramid Doesn’t get talked about much”.

Under both the medical and social construction models of sexual dysfunction, pain is generally recognized as valid problem that cannot always be explained away. It is the sexual problem for which medical intervention is the most acceptable, relatively speaking. Even Dr. Leonore Tiefer, proponent of the social construction model of sexuality, who organized the New View Campaign, has stated that sexual pain is the one and only valid and important sexual dysfunction – at least so long as we continue to use that terminology. Pain might be due to a vulvar pain condition like vulvodynia or vaginismus, or it might be part & parcel of another chronic health condition. It may be exclusively limited to sexual situations.
I’ve noticed that since pain is more readily recognized as a medical problem and a sexual dysfunction, it’s treated funny in discussions of FSD. Even though pain falls under the broad umbrella term of FSD, it’s frequently ignored or gets at best one-line mention in an article. So there’s a poor exploration of overlap between pain + other sexual problems. And as someone with sexual pain problems, I can’t ignore the way that other non-painful forms of FSD are discussed; the way sexual medicine is stigmatized – that’s a lot of stigma to get over, when you need to reach out to a medical professional for help. The take-away message stuck in my mind is, “Of course HER distress is palpable and important – she’s in physical pain! HER sexual problem is okay to treat with a pill or whatever, but YOURS isn’t. Why are you so worried about anything other than pain, anyway?” It is as though the distress I feel from experiencing pain with sex is more legitimate than the distress that another woman feels from lack of orgasm, or whatever else.
Even though sexual pain may be treated with relative respect in discussions of sexual dysfunction, the reality remains that it’s still viewed as a joke. Write frankly about dyspareunia and you may find trolls come out of their dark hiding places. In real life sexual pain gets no special treatment.
(For the record, I know that I talk about sexual pain with more detail than I do other types of sexual dysfunction on this blog. This is not because I think other forms of sexual dysfunction are unimportant – it’s because I have the most experience with sexual pain.)

I placed arousal problems on the second tier. This can be a problem because a lack of arousal in and of itself can contribute to physical discomfort with vaginal insertions of objects say, if you are not  producing sufficient lubrication. I’ve found that a little lubrication can also make vulvar stimulation more comfortable with a partner. I also placed this one second on the hiearachy chart because there are sex toys and some medical tools (I’m thinking of vacuum pumps and lubricants) available for women with arousal difficulties. (There’s also that Zestra thing that’s been going around stirring up double-standards in advertisements controversy too but I don’t know how effective it really is.) This is also where erectile dysfunction would go, as the presence of an erection is not necessarily the same as the presence of sexual desire (a distinction which in and of itself can be difficult to come to terms with.)

I placed lack of orgasm and/or sexual pleasure on the third tier, in orange. Things are really starting to get messy & controversial now. There’s sort of a medical treatment available for this (the Orgasmatron spinal cord stimulator) but it’s heavily sensationalized and it may not even work well.
And orgasm itself can be controversial – How much should an expert and an individual emphasize the importance of orgasm? Does emphasis on sexual pleasure create pressure to have an orgasm? What if you’ve tried everything and it’s just not happening? What if the reason you cannot orgasm is because of poor sex education; because no one ever showed you or your partner how? What about if you were previously orgasmic and subsequently developed difficulties orgasming – say, from an injury, antidepressant use, or something else? If you are having difficulty with orgasm because of a medical problem then should that be recognized as a sexual dysfunction in and of itself or as a symptom of something else?

The fourth tier is the one that sets off alarm bells most frequently. When the media covers sexual dysfunction, this is usually what journalists are talking about and what sexologists respond to – low or absent sexual desire. It’s very controversial as far as sexual dysfunction goes – How are we defining low sexual desire, what is the measuring stick? Could a low or absent sexual desire be part of your personality or sexual orientation (asexuality) and, if so, how do we make that distinction? What terminology should we use; should we call it a sexual dysfunction or a sexual problem? Does it have a cause and if so, what is that cause; are you stressed out or have you started on a new medication? If not, then have you stopped to consider social construction arguments to explain a drop in libido? Could low libido ever be more than one of the above or possibly all of the above?
In terms of the FSD hierarchy, this is the dysfunction that is most socially unacceptable to have (or at least to publicly disclose) and certainly the least acceptable one to seek medical treatment for. The New View Campaign’s activism during buildup to the flibanserin hearings explicitly stated, “Low sexual desire is not a disease.” This is a theme repeated throughout Sex is Not a Natural Act and A New View of Women’s Sexual Problems.
However, somewhat paradoxically, it may be acceptable to have low or absent sexual desire – so long as we don’t call it a dysfunction and so long as we avoid medical options to address it.

And then there’s the fifth tier, which isn’t even part of the pyramid. I put it underneath the pyramid, underground – because it contains stuff related to sexual dysfunction that rarely gets discussed. This is where stuff that gets swept under the rug goes. It’s where alternative views of sexual problems and dysfunctions are – brigid wrote about this in her guest post, On the FSD hierarchy and why it hurts all of us – here, she discussed endometriosis and the lack of discussion about how it impacts sexual functioning, and she said, “By silencing other women who suffer from FSD just because it doesn’t fall under one individual’s narrow view of what fsd is and how it works, we are hurting every woman who needs help.” Another example would be an alternative interpretation of sexual pain proposed by a co-author of Secret Suffering – that sexual pain can also mean pain in the sex organs.
This is where interstitial cystitis wound up when MTV ran the True Life episode, I Can’t Have Sex. One of the participants of the program, Tali, has IC and IC activisim is an important part of her life. So one of the criticisms with the True Life episode (and this is in no way Tali’s fault,) is that it did not even mention the words, “Interstitial cystitis;” instead the episode focused exclusively on sexual pain. It’s related, but not a purely sexual topic.
And underground, off the pyramid, is where overlapping issues go – for example, to have both sexual pain and a low libido. These two topics may very well be related – it’s possible to experience a drop in sexual interest due to sexual pain; I’ve also seen it suggested that women who have sex with a low libido may experience sexual pain. But what happens when one problem or another resolve? What happens when you find a way to address sexual pain but your libido does not rebound?
And underground is where intersectional issues go – to have a sexual dysfunction and be any sexual orientation other than straight; to be a woman of color with sexual dysfunction; to be a trans person with sexual dysfunction; to have a disability + a sexual dysfunction (which in and of itself may be another disability;) to be kinky yet sexually dysfunctional. (All topics which I’d like to see covered on this blog in 2011 – hint, hint.) Part of the reason I started this blog is because I felt like there weren’t a lot of good resources available specifically for folks with sexual dysfunction. Why would there be such resources, after all, if sexual dysfunction isn’t a real thing: If it isn’t real, then there’s no need for such resources and support – just use whatever anyone else is using. That ought to be good enough, right?

But then I was thinking to myself, this is the way that I’ve seen discussions of sexual dysfunction go in online interactions… but what drives these discussions in the first place? Usually, it’s media coverage. And the media prioritizes coverage of sexual dysfunctions differently than what’s shown here.

So here’s a different model of the way sexual dysfunction discussions might be pictured, as driven by the media:

[Description: another multi-colored 4-tier pyramid graphic, this one inverted so the narrowest point is at the bottom. Labeled The Media and sexual dysfunction pyramid V. 1.0. Representing how the media covers sexual dysfunctions and problems. On the top is “BONERS,” second tier is “Libido,” third tier is “Orgasm” and the bottom tier is “Pain.”]

And here’s an explanation of this pyramid:

1. BONERS – (inspired by Sady Doyle of Tiger Beatdown.) It’s okay to show commercials for erectile dysfunction but not a commercial for Zestra, which supposedly acts on sexual arousal in women. BONERS may or may not be equivalent to libido and orgasm.
2. Libido – after getting past all the commercials and in-print advertisements for Cialis and Viagra you might find yourself reading an article about some other such medication that’s supposed to increase libido or about relationship tweaks you can supposedly make to get more satisfaction.
3. Orgasm – then you may see some advice columns talking about figuring out ways to have an orgasm.
4. Then sometimes sporadically there’ll be an article somewhere about sexual pain.

Not pictured: My total lack of effort in making this graphic and my own amusement in using the word “BONERS” in a graphic on an otherwise serious feminist blog.

As with thinking about sexual dysfunction in terms of disability, this is something that’s very new even to me, and something I’d appreciate feedback on.

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