Doctors debate dyspareunia part 4: The debate continues

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Facepalm Carl Pictures, Images and Photos

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*record scratch sound*

The heart of feminist critique of patriarchal sexual relations?

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

But…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Doctors debate dyspareunia 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…

Quick link – a dating site for folks with sexual problems

08/16/2011 at 10:07 pm | Posted in Uncategorized | Leave a comment
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Found via Jezebel today, here is a link* to a new dating site, 2date4love.com. The site’s own description explicitly says,

2date4love℠ is a dating site that enables people who cannot engage in sexual intercourse to meet and experience love, companionship and intimacy at its deepest level.

And this bit posted in the New York Daily News expands on that idea, saying,

The website is also for men and women who can’t have sex because of other injuries or disabilities, or who are simply uninterested in being physical with their partners.

We may swing back around to take a more in-depth analytical look at this later, but until then I thought this might be relevant to some readers’ interests right now. Since it’s a new site, and a little different, I expect to see more written about it through other channels as well. (If you will be reading the links provided on their media page, I suggest in advance avoiding comment sections.) There is a FAQ page but it doesn’t address the kinds of questions we here on this feminist-type blog might be interested in. What I do know is that it was founded by a stage 4 cervical cancer survivor who would otherwise now experience painful sex. Laura Brashier talks a little more about her experience with cancer treatment and her desire for sexual intimacy on the Good Morning America website.

*Probably don’t need to state it, but just in case: This post should not be interpreted as an endorsement or an approval of 2date4love. Always use safety precautions when doing stuff online.

Guest Post: On sexual pain, consent & treatment

08/09/2011 at 10:51 pm | Posted in Uncategorized | 10 Comments
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[Dear internet, we have a guest poster today! The following was written by someone who prefers to remain anonymous. A trigger warning applies, for questions of sexual consent and rape.]

I offered about two years ago to make a guest post on this blog, then tried to actually write it, and vanished into thin air because I was so uncomfortable with the issues it was dragging up. I was trying to write something hilarious, and political, and historically enlightened. But it turns out that the only important thing I need to share right now is what happened to me.

This is a post about feminism, sexual pain, and consent.

Here’s what’s wrong with me: I have a pelvic floor dysfunction. It’s originally a muscular problem: it means that somewhere along the line, I got the habit of carrying tension in my pelvic floor the way other people carry it in their shoulders. I get vaginal muscle spasms the way other people get neck cramps. They could get set off by any kind of anxiety, such as direct stimulation of an already-painful spasm, leading to a godawful feedback loop called “secondary vaginismus”—a conditioned psychological response of increased painful spasms, and aversion to sex, due to the association of vaginal penetration with intolerable pain. The happy ending is that my primary dysfunction was treated by physical therapy, which gave me strategies for combating the muscular issues; and the secondary aversion went away because the association was broken. The physical therapy process took about 3 months. I wasn’t able to find it for 9 years.

The horrible thing about getting to the correct therapy for vaginismus was that even reasonably well-educated doctors seem to routinely believe that the only way a woman gets a conditioned aversion to sex is rape, or a fundamentalist upbringing that teaches that sex is dirty. I have had fruitless arguments with puzzled GPs who, I believe, left the encounter convinced that I had somehow buried sexual abuse trauma somewhere in my brain—when in actuality, the genuine traumatic moments of my life had been occurring on their own gynecological exam tables. And all in the name of getting my poor, long-suffering boyfriend laid.

To say that this sort of thing breeds resentment is just a little bit of an understatement.

Here’s the thing of it. Since I had my first orgasm (clitoral, manual), I never really saw the big deal with getting my twat all stretched out into fighting shape. I liked sex, I was fully capable of climax, I could make my partner climax, and as the pain mounted, I was increasingly convinced that there was no logical need for vaginal intercourse specifically. The boyfriend didn’t share this analysis. At his urging, and my initial gameness to experiment, we tried, and failed, and tried, and failed.

Maybe it’s really bad for all girls, but they put up with it better than me. I’m a spoiled, privileged elite wimp. I need to grit and bear it before I can get the good stuff. “Our Bodies, Ourselves” taught me sex was supposed to be fun for me. Was that just rose-tinted glasses?

The more we tried, the less it worked, and the less I wanted to have sex at all. I went to the gynecologist. I grit my teeth around the speculum, was told I was “small” and needed to stretch, was handed a plastic dilator and sent home. I couldn’t look at it. I put it under the bed.

I am lazy. I am a coward. I am frigid. Did feminism make me frigid?

(Years later, on vaginismus support groups, I would encounter all these women who described their boyfriends as saints. Soooo patient, soooo understanding. Here’s the thing, ladies: he’s not the one suffering dysfunction and pain. That’s you. Him? He’s horny. It’s not a martyrdom. Last resort solution: he whacks off.)

I am denying sex to my boyfriend. Every day we are together is an archetypical punishment for him. If other people knew, they would think he was crazy to stay with me. I can’t tell anyone this is going on.

He stopped requesting that we try, but everything had already turned into guilt. Without really knowing why, I no longer wanted to have sex with him. He would ask, and because I felt like it was ungenerous not to, I would whack him off. I let him touch me only when I wanted it, because that’s what a good feminist does, and that was less and less often. I was frigid when he was home, and I masturbated when he went away. This went on gradually for about six years. It was some kind of screwed up, semi-coerced, semi-consentual sex; nobody made me do what I didn’t want to, but I didn’t want to. The logic goes something like this:

1) Who would ever date someone who can’t have intercourse? Such a person isn’t a functional woman. Such a person isn’t a whole woman at all.
2) Therefore, this is my only option for a life partner. I have to make it work.
3) He wants consentual sex with me. So we will have (unwanted) consentual sex.

(All the while I’m angry as hell, on some level, and undermining the situation like mad.) I sought treatment again, and was referred twice to a psychiatrist for vaginismus, which was described as a mental condition caused by the aforementioned rape or ignorance. I threw the pamphlet away in disgust. St. Boyfriend became depressed, I was pretty sick of it too, and he broke up with me. In the desperation of feeling like I was defective—which I felt very deeply and very abstractly and clinically—I finally went to a psychologist, who confirmed that the problem was physical and not psychological, and referred me to a specialist in pelvic pain, who referred me to a physical therapy specialist in pelvic floor dysfunction. Three months later I was having intercourse.

Here’s the kicker, though. I went through the therapy process because I felt defective without the capacity for PIV intercourse—even though I thought, all the while (and I still think) that this is a nauseatingly offensive and wrongheaded idea, and that all those quiet thoughts I had between the lines of what happened were horrible and wrong and poisonous, untrue things. And I got desperate enough to fight my fear and pride and begin the therapy process because I believed that no matter how poisonous I knew they were, precious few men would be enlightened enough to date someone incapable of intercourse. I might even be right about that. But I don’t think I’m ever going to be quite reconciled to the fact that even though a streak of self-destructive pride kept me from seeking treatment in time to quench the lust of my own St. Boyfriend, I did finally seek it for the sake of the hypothetical St. Boyfriend of my future—not for my own sexual needs. Now every time I give consent, no matter how willing, it’s always going to be tainted by that history. And that strikes me as very unfortunate.

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…

Product review: The Pinwheel

07/05/2011 at 10:57 pm | Posted in Uncategorized | 13 Comments
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(Not into product reviews? Consider this a warm-up before we get to the juicy stuff, as I’ve been out of practice with writing for awhile.)

My partner and I have a love/hate relationship with the Pinwheel, a medical-device-turned-sex-toy.
That is to say, I love it and my partner hates it.

Pinwheel 1 picture

[Description: A silver device with a long, thin handle resting on white cloth. A circle is attached to one end. There are something like 20+ thin, sharp points, each equal length, sticking out from the circle.]

What we’re looking at today is the Pinwheel, which some of you may recognize for what it really is: A Wartenberg wheel. The Wartenberg wheel is a medical device originally designed to test nerve response. It was developed by Robert Wartenberg, a doctor specializing in neurology, who practiced in Germany until he fled to the US in response to persecution by the Nazis. Wartenberg syndrome, a pain condition, is named after his work.

I don’t know if the Wartenberg wheel is still used in clinical practice, as most of the google results for a it point to the device’s use in kink and BDSM activities instead. Somewhere along the line, someone figured out that using the spiky wheel on yourself or on a partner could feel good in and of itself – at least outside of a clinical setting. Nonetheless, because of its original intended use, some readers here may not want to incorporate this into their sex lives – it may have too clinical of a feel, and it has the potential to be genuinely painful.

How and why would one go about incorporating something so sinister looking into their sex life? According to Babeland, it’s a sensation toy. I don’t 100% know what that means, but a label like sensation toy seems to indicate that, what you’re using is supposed to introduce new physical feelings – touch that you or your partner don’t usually feel, like sharpness instead of softness, metal instead of flesh, cold instead of warmth, and so on. It’s to add variety rather than to speed up orgasm. For example, I like to incorporate it into massage with my partner, though this can break a deep state of relaxation.

Now there is one problem with my Pinwheel:

Pinwheel picture 2

[Description: A close up of the wheeled spike circle on the end of the pinwheel's handle. There are clearly some prongs all bent out of shape at the very tips.]

I think mine’s broken, and I’m not sure if it got messed up during shipping or if it got all bent out of shape the first time I was taking it out of the packaging. Either way it was like that when it got here.
In practice, the 3 bent prongs don’t seem to make much of a difference. The points are small enough so that I can’t tell the difference when my partner rolls the bent part over me. But the bent parts have gotten stuck on my hair, so it could be a problem. And the bent parts take away from the device’s aesthetic - it doesn’t look pretty and I find the bent parts distracting. So sooner or later, I’m going to need to replace it.
In other words, if you decide you’re interested in such a wheel, don’t pick one out if you notice any problems with it. Hold out for a nice new one. Once you have one, handle with care – the Pinwheel is more fragile than it looks.

It makes some noise. Because it is made of metal, and the wheel has to be free to move, the device jangles around when you pick it up. Once I recognized the sound it made, my partner was no longer able to sneak up on me with it – I could hear the metallic parts clinking together.

It’s lightweight, especially if you can hold the entire handle in your hand. It could become tiring to hold if you can’t get a good grip on it, or if you have to hold it from only the very bottom of the handle.

When rolled over skin, the metal points will leave little red dots behind in a long unbroken trail; how long it takes for these marks to fade will depend on your own biology. The sensation is difficult to describe – have you ever just barely noticed the feeling of an insect crawling on your skin? If you look down at your arm or hand, yep, there’s a critter on there alright – and at this point you (I) usually kick or flick it off. To me, a light touch with the Pinwheel feels like that, minus the gross-out realization of “Ew there’s a bug on me!” Medium and heavier touches feel much more intense and surprisingly widespread. The wheel may be rolling over only a small part of one of my limbs, but the feeling and muscle tension reaction will spread all the way down the limb.

When my partner uses it on me it makes my muscles tense up involuntarily until the stimulation stops. I’m not sure if this is good or bad for me, since those muscle contractions include my pelvic floor, and my pelvic floor is already messed up as it is – what that means is I can’t decide whether or not it would interfere with Kegels. Heavier touches on healthy skin border on pain but so far do not cross the threshold into actual pain.

So although I enjoy it, in contrast, when I tried it out on my partner, it didn’t go over so well. The spikes produced a lot of skin welts, a little red pinprick of blood, his wriggling away and finally, after a few generous attempts and “I don’t know if I like it yet,” a final “No more I’m done I hate it.” He is still willing to use it on me at my request, but he does not understand why I like it. I don’t have an answer. But clearly this is not the right toy for him.

It’s relatively inexpensive, though the price can vary widely – between $4 – $20, depending on where you buy it from. A Pinwheel from Babeland (which is where I got mine from) will set you back $20, but you can get the same thing for less through Amazon (this might be a more innocuous option if you share your computer with someone who would not appreciate navigating it towards adult-themed sites.) Supposedly there are expensive versions which are more geared towards medical use in a professional setting, though I did not find them during a cursory search.

I do have some caveats before you rush out and pick one up. It broke my partner’s skin, so there’s a risk it could break yours, too – watch out for bodily fluids. It’s stainless steel and it can be cleaned, but most of us probably don’t have the means at home to truly sterilize a medical instrument to medical standards. My partner doesn’t like the ticklish sensation it produces, so if you dislike light touches it may be too uncomfortable. It has the potential to be painful as well, and so if you are sensitive to touch it might not be the right toy for you.

As with all reviews posted on Feminists with FSD so far, I had to pay for this out of pocket with my own money, and I don’t get any compensation out of posting this.

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.

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