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…

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Aren’t tax returns *Fun*?

01/01/2012 at 6:47 pm | Posted in Uncategorized | 6 Comments
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Is everybody excited for tax season?! January 15 to April 15, woo-hoo…!

I’m dreading it. My tax return is the opposite of fun; I bet yours isn’t much better. Certainly filling out tax returns can be headache-inducing, to the point where some folks hire out the service to a third party. But sometimes, examining financial statements and tax returns can reveal useful – if dry – information.

I don’t mean to get paranoid here, but since Jezebel pointed to a fascinating critique of anti-gay marriage group NOW’s tax records carried out by American Independent, and Feminist Whore pointed out the high salaries received by higher-ups at the Police Executive Research Forum (timely in light of their alleged involvement in suppressing OWS,) I figure it’s fair for me to point you in the direction of some feminist & health nonprofit organizations tax returns – if only to use them as examples of some interesting features to look for when choosing where to donate your hard-earned tax deductible donations. It’s a way for the public to hold charities accountable and a way for the charities to maintain transparency.

Caution: Among many other things, I am not a tax professional. There’s a limit to my interpretations of the following tax returns. I know enough to find public returns mildly interesting, but please address serious inquiries to a real pro. (Good luck with that – I knew a tax professional who replied to all questions about taxes from laypersons (including his friends and family) with, “Sure, I can help you with that, I’ll do some research – if you pay me!”) Nonetheless, nonprofit tax returns are publicly available information you have a right to review. All we’re doing today is stating the obvious. One additional caveat: This post is US-centric, since we’re dealing with US tax laws.

If you want to evaluate charities, there’s some decent guides available online. According to CharityGuide, excellent organizations put about 80 cents out of every donated dollar towards their stated purpose – and you’ll find that purpose explicitly stated within a tax return. In general, fundraiser, salary reimbursement and administrative costs should be relatively low. Good luck with that, since some charities classify fundraiser activities as something else. A shortcut to some strong charities is compiled here and here. I recommend this easy-to-understand 990 guide by Ronald Campbell, but it’s in Word .doc format – Google Docs can open it though.

Of course the financial criteria do not address the subjective, ideological importance a charity to you. That means organizations with high administrative costs may in your eyes still be “Worth it.” Or not – for example, the Salvation Army has an excellent financial rating, but it has been subject to criticism from sex workers and LGBT advocates. So there’s more to think about than money.

Protip: Usually you can use the IRS’s search pages, to confirm that donations to organizations are in fact tax-deductible by using the Search for Charities tool. Alternate searches for financial records can be conducted at Guidestar and Foundation Center. However, according to the IRS’s site, small tax-exempt organizations with revenues below a minimum thresh hold (Between $50,000 or $25,000, depending on the year,) don’t need to file a regular tax return. Such small organizations can report in using an e-postcard instead. And the IRS search function to look for 990-N e-postcard organizations is located here.
It can be a little tricky to find some organizations since the DBA (“Doing business as” – how you know an organization) names might be different from the name on their official tax return. Bitch Media’s official name is “B Word Worldwide.” And to make matters more complicated, some nonprofit orgs accept tax-deductible contributions through a loophole via a pass-through.  In order to make a tax-deductible donation to sex education site Scarleteen, you have to go through the Center for Sex and Culture. (You can donate any amount at any time – but you can’t necessarily deduct the amount at year end unless you do it a specific way.) UPDATE 1/3/11: Heather Corinna stopped by (*excited gasp*) and pointed out that you can make tax-deductible donations to Scarleteen through the NetworkforGood nonprofit organization.

Speadking of Bitch Media! Let’s start off with this feminist organization as an example. You’ll find that there’s a lot of jumping around to do when you look at a tax return.

The most recent tax return is from 2009. Here’s some highlights about how Bitch did that year: I’m seeing negative income (loss, so their expenses were greater than income) for the year – which can happen when you run a non-profit – and negative assets. Non-profits place a higher priority on goals other than making “Profit,” so losses can happen from time to time. But according to the tax professional I quoted earlier in this post, ultimately nonprofits still have to run like a business… I’ve seen nonprofits collapse for financial reasons.

Next up are some yes/no disclosure questions. When I do a quick rundown of this part of the return, I look for check marks that don’t line up with everything else – a “Yes” where most other answers are “No.” For Bitch’s return, I find most of the answers to yes/no questions in the return to be mundane, except for one indicating that a loan to a major stakeholder was outstanding at year end. We can learn more about this loan by jumping to Schedule L, which indicates about $5k remained to be paid back by Lisa Jervis – she’s the founding editor of Bitch.

Parts VIII, IX, and X break out the yearly revenue, expenses & balance sheet by category. Basically, most of the 2009 revenue came from “Other sources” and sales of inventory (magazines?) The revenues in Part VIII Column B & C add up to the $117,386 listed back in Section III as revenue toward Bitch’s goal – analyzing pop culture from a feminist perspective. The biggest expenses (Part IX) were labor related, and about half of their expenses (Column B) went most directly towards Bitch’s mission statement (for tax purposes anyway.)
(FYI I’m not using shorthand for ‘section,’ ‘part,’ or ‘schedule’ – these all have unique meanings and locations so don’t mix ’em up.)

Turning towards women’s health, here’s a copy of the Boston Women’s Health Book Collective’s (AKA Our Bodies, Ourselves) 990 for 2009.

What I find most interesting about this return is that, between 2008 and 2009, the amount of net income this non-profit earned netted to almost zero. There was a loss one year and a profit the next. The net income between the two years was ever so slightly negative – something like a loss of -$1660+ total. Interestingly, OBOS lobbied for political activity, as described in Schedule C, $1400 worth of lobbying. Most of their revenue came from “Other sources” and royalties (books?) Most of their expenses were program-related and again, labor-related costs made up the biggest chunk of expenses. If we jump down to Schedule A, we can drill down farther and see that the revenue from “Other sources” came from the public. Schedule F is included, and it lists the value of activities outside of the US.

Readers with vulvar pain problems may be interested in the National Vulvodynia Association’s tax return for 2009. Here’s some highlights of how the NVA did:

The organization had net income (“Profit,” if we were talking about a business,) of a little over $100k for 2009. One interesting response to a yes or no question is that, we see that under part VI (page 6) that there’s a familial or business relationship between at least two of the key stakeholders. A disclosure like that can indicate a potential conflict of interest, so it’s something to keep in mind as a donor. If we drill down to schedule O, we can see that the board president & treasurer are married. Part VII lists out compensation to officers & directors – with this return, we can see that executive director Christin Veasley (you may recognize her name from the website and from interviews, etc.) received about $50k for the year for her work with the NVA.

The NVA generated most of its revenue (almost $300k) from “Other sources,” which means the public at large – and over $50k from investment income, with another $20k from selling assets. The balance sheet shows that the organization holds over $1 million in investments. The NVA’s 2009 tax return lists limited fundraiser expenses. The NVA funds grants for research & treatment of vulvar pain. Labor and grant allocation were the largest expenses – the NVA distributed about $75k worth of grants. Schedule F & I break out where the research grants went – about $50k (doled out over 6 grants to medical and educational facilities) stayed within the US, and $25k (2 grants) went abroad. There are printing, internet, mailing and publishing related expenses broken out as well – keep in mind the NVA maintains a website and produces pamphlets & guides, etc. for patients & doctors. So per Column B of Part IX, most of their operational expenses were related to the NVA’s mission statement.

At this point, I would like very much to show you all the tax records for the New View Campaign, a feminist nonprofit organization dedicated to spreading the social construction view of sexual dysfunction and combatting the medicalization of sex. After all, Dr. Petra Boynton has recommended directing donations to the organization for the last two years. However I can’t find their records on Foundation Center, GuideStar, or on in New York’s state’s registry of corporations (including nonprofits) and businesses. I can’t find the group listed in the IRS charity database. I’m both fascinated and frustrated that I’m having difficulty confirming the organization’s tax-exempt status. It’s not just that I can’t see the 990 document – nonprofits are not obligated to make the forms available online – it’s that I can’t confirm the group’s exemption using the IRS’s publication 78 database.

I’m stumped, however the lack of confirmation doesn’t necessarily mean anything. The New View Campaign could be operating under a different DBA name. The most likely scenario is that the tax stuff isn’t readily available because the revenues are small (I’m comfortable estimating under $25k/year,) and that if I just ask politely, a representative from the group would be happy to send me the New View Campaign’s public tax records. I may yet do something like that – we can always swing back around to analyze the records later.

In conclusion, I hope I have provided readers with some tools about how to follow the money trail at non profit organizations, how much cash you’re willing and able to provide to charities, and what charities make the most efficient use of funds. Keep in mind that there’s limits to the information though, and it can be hard to find this information in the first place if you don’t know where or how to look. Understanding nonprofit finance isn’t easy, and the tax froms can’t tell you everything, but sometimes you can quickly find interesting answers to burning questions.

As for other blogging news – every blog and their grandmother is posting 2011 retrospectives in light of the new year! Expect to see mine, listing 2011’s don’t-miss posts from this blog, later this month.

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 2: Is pain the only valid FSD?

08/17/2011 at 9:51 am | Posted in Uncategorized | 3 Comments
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Previously on Feminists with Female Sexual Dysfunction…

Many folks who experience sexual and/or genital pain share the experience of getting bounced around from doctor to doctor when seeking satisfactory resolution to their problems. In a recent post on this blog, I explored one of the many reasons the doctor shuffle occurs: there’s no definitive class of doctor designated to handle sexual & genital pain. And behind the scenes, doctors themselves are debating what medical specialty is best prepared to address this type of problem.

In 2005, a peer-reviewed journal published an article by Dr. Yitzchak M. Binik, Ph.D. His idea was to start a serious debate on how best to handle dyspareunia (painful sex.) Currently, under the DSM-IV, dyspareunia is classified as a sexual dysfunction. When the DSM-V revision comes out, it is likely to be kept there (though under a different name, genito-pelvic pain/penetration disorder.)

Dr. Binik made some compelling arguments in favor of of changing the classification of sexual and genital pain from a DSM-recognized sexual dysfunction to a pain disorder. But his position was controversial, and generated many professional responses against making the switch.

One such published response came from Dr. Leonore Tiefer, a feminist sexologist, author, college professor and organizer behind the New View Campaign, an organization opposed to the medicalization of sex, with a particular focus on the role of Big Pharma. I have read and reviewed some of Dr. Tiefer’s previous work on this blog, bringing to it my own unique perspective as someone who actually has FSD.

Unfortunately this time I won’t be able share the full ~2 page text of Dr. Tiefer’s response, Dyspareunia is the only valid sexual dysfunction and certainly the only important one, because it’s locked down behind an academic firewall. I think I can share a summary of what’s in it (with my own commentary,) but unless you’re enrolled at a school with journal access, you’ll have to take my word on good faith.

Dr. Tiefer’s disagreement with Binik’s reclassification argument focused exclusively on one argument: Nomenclature; the power of names. It’s a familiar theme in Tiefer’s earlier work – language is a powerful tool capable not only of reflecting reality, but of shaping it. And Dr. Tiefer has serious concerns about the language used to describe sexual problems in particular. In light of this, I was surprised to find that in her response to Dr. Binik’s article, Dr. Tiefer argued in favor of keeping dyspareunia classified as a sexual dysfunction instead of a treating it as a pain problem – At least, so long as such terminology is used by the American Psychiatric Association.

Dr. Tiefer starts her article by describing the origins and goals of the New View Campaign. One of Tiefer’s criticisms of female sexual dysfunction is that it’s based on the idea of deviations from a “Normal,” universal sexuality, but normal is arbitrarily defined and doesn’t account for all of the human population. In this case, the “Normal” sexual response cycle was defined by Masters & Johnsons’ work – the four-phase model that goes, excitement, arousal, orgasm and resolution. Sex doesn’t work that way for everyone, and so over the last few years – decades at this point – she has challenged the medicalization of sex, with a particular interest in libido and orgasm.

“My criticisms have, however, focused on the universalized notions of desire, arousal and orgasm in dysfunction nomenclature, and not on the inclusion of dyspareunia and sexual pain. Immersed in the feminist literature on women’s health, I was more than aware of the disgraceful history of neglect and mishandling of women’s complaints of pelvic pain and thus it seemed that dyspareunia was the only sexual dysfunction with validity in women’s lives (50, emphasis mine.)

(And that’s where the title of the article comes from. I don’t know whether Dr. Tiefer picked the name out herself, or if some editor arbitrarily decided it, but we have the same sentiment reflected in the body of the text.)

However, when criticizing female sexual dysfunction, Dr. Tiefer has in the past included pain. It’s true that she doesn’t talk about it much, relative to her body of work on orgasm and desire. But in the past she has let pain stay under the broad umbrella of the term, “Sexual dysfunction,” complete with scare quotes:

We believe that a fundamental barrier to understanding women’s sexuality is the medical classification scheme in current use, developed by the American Psychiatric Association (APA) for its Diagnostic and Statistical Manual of Disorders (DSM) in 1980, and revised in 1987 and 1994. It divides (both men’s and) women’s sexual problems into four categories of sexual “dysfunction”: sexual desire disorders, sexual arousal disorders, orgasmic disorders, and sexual pain disorders. These “dysfunctions” are disturbances in an assumed universal physiological sexual response pattern (“normal function”) originally described by Masters and Johnson in the 1960s.

In the New View manifesto, Dr. Tiefer kept sexual pain disorders lumped with all the other dysfunctions that merit feminist skepticism and critique. Feminist critique, such as the perspective that DSM criteria for dysfunctions (including pain) are excessively genitally, and therefore reproductively, focused (Sex is not a Natural Act, location 737.) However in 2005 we see support for leaving dyspareunia behind, as the only valid sexual dysfunction.

Dr. Tiefer’s quote about the importance of dyspareunia as dysfunction is problematic for additional reasons: The implication here is that no other sexual dysfunctions recognized in the DSM have any merit as a health problem. That’s a key point of the New View Campaign: Desire, arousal, and orgasm problems may not be problems at all, and when they are, the problems can be addressed with lifestyle and social change instead of medicine. But here I interpret the idea that pain is a sexual dysfunction, and the only valid one, as maintaining a sexual dysfunction hierarchy. It elevates physical pain above all others. My problem matters; yours doesn’t. My physical pain is real, your emotional or psychological pain isn’t.

So what does this mean for folks who have one of the less-important, invalid dysfunctions? To whom can they turn when they have exhausted virtually all of the non-medical interventions for long-term sex problems?

Dr. Tiefer then briefly expands on some implications of Masters and Johnson’s work. In the next section of her response, she describes an alternate, benevolent way of looking at the inclusion of sexual dysfunction in the DSM: Recognizingsexual problems as health and medical problems legitimizes such problems in the public’s eye. Suddenly, sexual problems are no longer just about sex, which (according to vocal conservatives anyway) is dirty and wrong and immoral – sexual problems are now about the body and health, which is (relatively) socially and politically acceptable to talk about. “Looked at from this perspective, the inclusion of women’s problems with sexual pain in the sexual dysfunction classification system was a positive step” (50,) because then the ISSVD and NVA can harness that legitimacy for raising awareness and research funding.

It strikes me as odd that Dr. Tiefer mentions the NVA and ISSVD by name as working for the benefit of patients with pelvic pain problems. Not because I have any question that both organizations do good for the public, but because in Sex is not a Natural Act, Dr. Tiefer had this to say about patient advocacy organizations:

These advocates for medicalization include self-help group and newsletter promoters who have created a market by portraying themselves as something between consumers and professionals. The formation of Impotents Anonymous (IA), which is both a urologists’ advocacy group and a self-help group, was announced in the New York Times in an article including cost and availability information on penile implants. (Organization helps couples with impotence as problem 1984.) … The advocates for medicalization portray sexuality in a rational, technical, mechanical, cheerful way. Sexuality as an area for the imagination, for political struggle, or for the expression of diverse human motives or as a sensual, intimate, or spiritual rather than performative experience is absent (locations 2277-2282.)

Basically, according to Dr. Tiefer, patient advocacy groups – at least those for erectile dysfunction – existed partly in order to sell sexual health problems, to promote a select few doctors qualified to treat the problems, and then to sell medical treatments for big bucks. In these earlier statements, Dr. Tiefer made it sound like patient advocacy groups were just part of the packaging that came with so-called selling sexual dysfunction. In fact, the formation of patient advocacy groups is one piece of what motivated Dr. Tiefer to organize the New View Campaign in the first place:

This backlash dovetails with the analysis and critique of “medicalization” over the past several decades within sociology, the women’s health movement, the “anti-psychiatry” movement, and newly, from cultural historians examining the social construction of illness and disease. All these scholars argue that the medical model, with its hallmark elements of mind-body dualism, universalism, individualism, and biological reduction, is not well suited to many of the challenges of contemporary life and suffering.

Yet, at the same time, patient advocacy groups are clamoring for medical legitimacy, increased funding and research, and, above all, new drug treatments. And the drug industry continues to expand.

Allying with the backlash, I convened a “Campaign for a new view fo women’s sexual problems” in 2000 to provide a feminist anti-medicalization perspective in the debate about “female sexual dysfunction” (location 3550.)

Given these prior statements on patient advoacy groups, I’m surprised that Dr. Tiefer didn’t skewer genital & sexual pelvic pain advocacy groups in her 2005 response to Dr. Binik.

Furthermore, by classifying dyspareunia as a sexual dysfunction, isn’t dyspareunia and its treatment subject to the same criticisms that Dr. Tiefer has previously made about sexual dysfunction and Big Pharma broadly? I’ve seen the rhetoric used by the New View used (and unfortunately warped) in feminist arguments against sexual medicine. And let me show you, it can get real ugly real fast. Leaving sexual pain as a sexual dysfunction might lend medical and social legitimacy, but not when you do everything you can to undermine the legitimacy of sexual dysfunction broadly and stigmatize those who experience it.

This post is getting way too long, so we’re going to stop abruptly here and come back after you’ve had a few days to digest our story so far. To be continued…

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…

What I know about interstitial cystitis

04/11/2011 at 7:27 pm | Posted in Uncategorized | 12 Comments
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Disclaimer: This post should not be taken as a comprehensive overview of interstitial cystitis, and it isn’t medical advice & isn’t meant to diagnose or treat any disease. There are a lot better resources for IC than this blog, if more information is what you’re looking for.

What I know about interstitial cystitis –

From the National Institues of Health / National Medical Library:

Interstitial cystitis (IC) is a condition that causes discomfort or pain in the bladder and abdomen. It is far more common in women than in men. The symptoms vary from case to case. Some people have an urgent or frequent need to urinate. Women’s symptoms often get worse during their periods. They may also have pain with sexual intercourse. [More @ the link.]

From the Interstitial Cystitis Association:

Interstitial cystitis (in-ter-stish-uhl sĭ-stī’tĭs), or as we call it, IC, is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go). [Click link for more.]

From the Interstitial Cystitis Network:

Interstitial cystitis (IC), also known as bladder pain syndrome (BPS), painful bladder syndrome (PBS) or hypersensitive bladder syndrome (HBS), is a condition that results in “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes.” (2009 New American IC/BPS Guidelines).The symptoms can vary greatly between individuals and even for the same person throughout the month, including an urgent need to urinate (urgency), a frequent need to urinate (frequency) and, for some, pressure and/or pelvic pain. People with severe cases of IC/PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia). [Go to main site for more.]

So why am I bringing this up now?

I recently went through a life change which I remain evasive about describing. What you need to know is that this change has put me in a position where I have to face the fact that my own urinary habits are causing significant problems for me and my loved ones.
My urinary frequency and urgency is not normal. We’re talking, using the bathroom upwards of 10, 20, 30 times per day, and anywhere from 2-10 times per night. On bad days I may have to use the restroom multiple times per hour.
I do not have urinary incontinence – I just have to go, now. In fact, excuse me —
— *ah* much better… For awhile…

Now seeing as this is a health problem connected in some way with my urogenital tract, unfortunately I suppose I need to pre-empt the ubiquitous question, “Have you considered the possibility that it’s normal for you??? How would you know???” with a response of, “Yes I suppose peeing excessively is normal for me, but it’s certainly unusual enough so that I’ll clearly stand out in comparison to the majority of people. Furthermore based on what I’ve gone through already, you don’t want to be out on the town with me and I don’t want to be with you because you will lose your patience after a few rest stops.”

I don’t know anyone else in meatspace who experiences urinary urgency and frequency to the degree that I do. I think it’s time to investigate the possibility of interstitial cystitis and similar conditions on top of my other pelvic problems.

For me urinary frequency and urgency is a long-term problem. Growing up, my parents and teachers disciplined me for using the bathroom so frequently, which just made things worse and pushed me further into denial. As I grew up, it just never got any better. When I was getting physical therapy for the pelvic floor dysfunction though, the urinary symptoms improved a little.

When you have urinary frequency and urgency, it can be a red flag a couple of other chronic conditions, like diabetes. Diabetes hasn’t been ruled out or looked into. But I’m not sure it’s even worth looking into, since I don’t have most of the risk factors and symptoms of diabetes. Another possibility I should rule out is thyroid problems, which are also associated with frequent urination – though again, I don’t meet most of the risk factors or symptoms for hypo- or hyperthyroidism. (At least, I don’t meet the criteria yet – I do have a family history of thyroid disease so I need to be alert for that down the line.)

But I do have co-existing pelvic floor problems… it just seems like too much to be a coincidence. Maybe I should look at related pelvic problems instead.

According to popular IC resources, I have more of the symptoms for IC than I do symptoms for diabetes or thyroid conditions. Other chronic condition (vulvodynia (and vaginismus/PFD)) – check. Chronic urinary frequency & urgency – check. Symptoms worse before period – check. Sexual pain – check.

A complication folks with IC may face – Disruption of social life – check. When I know I’m going to be in transit for a prolonged period of time, I have to consider the availability of a rest stop. If I don’t expect to find one, I have to strictly limit my fluid intake – or else not go out. I have missed out on some social interactions because I knew that I wasn’t going to be able to control my urinary urgency – and I was afraid of the physical discomfort or being made fun of for it.

I’m at the point now where I can’t eat or drink anything for breakfast at home if I know I’m going to be out and about a little later. Because the food & drink I like will make me pee. Repeatedly. The morning commute isn’t long; however, there aren’t many rest stops along the way. Stopping to use one of the few facilities will disrupt the commute to the point where stopping isn’t worth it. The city where I live is relatively accessible for people with mobility disabilities – but significantly less accessible for people with bladder problems. (I can’t help but notice that the nearest IC support group is located in a smaller town outside the main city.) Everywhere I go there are signs posted in windows that say “No public restrooms” “No restrooms” etc. And the publicly available restrooms are spaced far apart, often with limited hours. Most shop keepers let you use the rest room if you are a customer – but even then the facilities are often kept under lock & key. And so far since the life change kicked in, I have been to one business that flat-out refused to let me use the restroom during an emergency – even though I was a customer. Since that event, I reviewed restroom tips on the IC help site, downloaded some recommended bathroom finder apps to my mobile device and watched a helpful YouTube video about travel tips for folks with IC, (no transcript) hoping to get advice on how to deal with too much pee.

The challenge is that I don’t have one of the most commonly reported symptoms of IC – pain.

The only times I’ve had pain with urination have been when I had an actual urinary tract infection. There have been only a handful of times when I’ve had bladder pain – all of these times happened when I was in transit somewhere and whoever was doing the driving could not or (or in some genuinely malicious cases, would not,) find a place to stop and go. I know what bladder spasms feel like.

I feel pressure when I have to urinate… discomfort… but it’s only crossed the line into pain a few times, usually for reasons I could pin down.

So without this important symptom, pain, I don’t have as much of a motivation to go to the doctor to seek a diagnosis in the first place. Even though I know there is not one way that all people with IC act, even though I know that symptoms vary from person to person, I still have this uneasiness about even entertaining the possibility of IC. It’s denial – how dare I consider possibility that I have a chronic health condition; it’s not really that bad, right? Then comes the internalized messages from my teachers and family, that it’s all in my head; I just think I have to pee.

Still, without the pain symptom, I don’t know if I would meet the criteria for IC. I might have something else like overactive bladder. Or I could just chalk the urinary problems up to my piece of shit pelvic floor. (Or maybe my teachers were right and it really is all in my head and I just think I have to pee and all I really need is discipline. At age almost 30 *rolls eyes* Or maybe I’m just one of those people with a “Small bladder.” You know, just like how lots of folks with vaginismus have a “Small vagina.” Not really, most of the time. It can happen, but it’s fairly rare.)

The other problem is I am absolutely terrified of some of the tests usually used to diagnose IC. The cystoscope, in particular, makes me want to crawl into a hole and never come out until the doctor goes away. (Except that I’ll eventually have to come out, because I will have to pee.) There are other, less invasive tests and procedures that can be used to diagnose or rule out IC, so I may be able to find something I’m comfortable with, eventually.

But even if I do investigate IC and get some kind of diagnosis, whether with IC or another health problem, there may not be much I can do about it. As with vulvodynia, there are treatments but no real cure for IC. It’s another long-term, chronic condition, so if I have it, realistically I’ll just manage it on my own with some non-invasive lifestyle & diet changes or with some medical tools. Likewise with diabetes, thyroid disease or overactive bladder. After almost 30 years like this, I it’s hard to imagine ever not having to pee at any given moment.

So I am not saying that I have IC. I don’t know. I have something I need help with and need to investigate further. And providing some links for reference – yours & mine. It has been going on for awhile, but I was able to ignore it until now. I can do so no longer.

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.

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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