Talking about FSD: how not to (part 2)

11/24/2009 at 7:08 pm | Posted in Uncategorized | 4 Comments
Tags: communication, experts, female sexual dysfunction, Feminism, FSD, health, journals, language, media, medicine, pudendal neuralgia, restless genital syndrome, sex, sex education, sexual dysfunction, vaginas, vulvodynia, what

A few weeks ago, The Nation posted an article about female sexual dysfunction, written by Joann Wypijewski, titled Sexual Healing. Rachel of Our Bodies Our Blog covered it with a link and some commentary. I saw several problems with the article in question, and have written about some of these problems not once but twice. And when it comes to talking about FSD, I’m still not out of steam yet.

How can I run out of steam, when authors, interviewers, doctors, therapists, and yes even feminists, keep on cranking out & covering new material about FSD, yet continue to make some serious mistakes when doing so? Wypijewski’s article has been joined by another in its well-intentioned but short-sighted spirit – “Restless Vagina Syndrome”: Big Pharma’s Newest Fake Disease, by Terry Allen.

What a funny title for an article about female sexual dysfunction, or at least Kate Harding over at Jezebel and the eponymous Kate Harding’s Shapely Prose blog found the title giggle-inducing and “Brilliant.” I’m sure she is not alone in her amusement – After all, Restless Vagina Syndrome – it’s like Restless Leg Syndrome (Is RLS inherently funny?) except this time it takes place inside your vagina. At first glance, without any further information, the term sounds like it must be synonymous with a high sex drive and frequent easy orgasms. How could anyone possibly label that a medical condition?

Actually, Restless vagina syndrome isn’t talked about for the rest of Allen’s article at all; whoever came up with that title merely exploited a documented condition (which we’ll get to in a bit) because it made the article more eye-catching and amusing to some.
No wonder Kate Harding thought RVS is a joke – Terry Allen provides zero information about the grain of truth he is riffing off of, and by labeling it (and more broadly, FSD in general) “Fake,” he preemptively discredits anyone who says otherwise, even if that means effectively calling the women & researchers involved in studying FSD fools and liars. And, after having done a little homework on Allen’s claims, I think he was counting on readers not to double-check him.
(No one with FSD read the comments section at either the Jezebel or Alternet article, as some of the comments are even worse and may cause explody-head.)

Allen’s article spends more time talking about the kind of female sexual dysfunction we all know and love (except not really.) He and Harding raise concerns about Big Pharma trying to invent and then market “Female sexual dysfunction” (Harding leaves the term in skeptic/scare quotes,) which she at one point refers to as “Listless vagina syndrome.” (I think that’s supposed to be another joke except that it backfires against me since I identify as having FSD. Do you mean to say that my vagina is lazy too?)

Interestingly, Harding uses skeptic quotes when talking about FSD, even as she acknowledges that, okay, maybe some of us really do have sexual problems that merit treatment… after all, she herself benefited greatly from a proper diagnosis of ADHD. But overall, the sentiment in Allen’s & Harding’s posts is that FSD must be a fake disorder invented by Big Pharma, in order to generate more money from a previously untapped market. FSD couldn’t have possibly existed before modern medicine (except that it probably did.)

But because folks like she and I exist, people with “Real” medical problems (and here I’m using quotes because I’m not comfortable with claiming my problems are more real & valid than anyone else’s, just because I can back mine up with medical records, which have also been and will continue to have their value questioned anyway,) we are putting everyone else at risk of exploitation by Big Pharma. Because I want treatment for my sexual health problems, I bear the responsibility & burden of enabling Big Pharma sneaking its phallic tendrils into all of our bedrooms & regulating our sexuality. That regulation might come in pill form designed to increase our libidios – but never too much, for if we become too sexual, too promiscuous, we may just be diagnosed with the dreaded Restless Vagina Syndrome.

I was really curious; is Big Pharma really trying to develop and then exploit a new, fake disease, by piggybacking on something that sounds similar to restless leg syndrome? (Only, it’s the vagina that’s restless.) What is this?

So I started searching for more information on this so-called Restless Vagina Syndrome. Luckily we live in the age of the internet, so my first starting place was Google. That search didn’t yield me much hard information about whether Big Pharma ever put out any material about RVS though – mostly it just points me back to Terry Allen’s article.

I was able to find an RVS parody video – Tranquivag on YouTube. The video pre-dates Terry Allen’s article by about 2 years; it was originally uploaded to YouTube in 2007. Is this what he was referring to? Did he get duped by a group of comedians?
It’s a comedy clip, so it’s not meant to be taken seriously. Or at least, I sure hope it’s not meant to be taken seriously. The viewer is supposed to find it amusing that a woman could be disturbed by invasive genital sensations that interfere with everyday activity and periods of rest – after all, who would find such usually pleasant sensations so bothersome, that you would have to take a medication with major potential side effects? I think the audience is supposed to think something like, “What a foolish woman; if she is bothered by her restless vagina, she should just have sex or masturbate.”  That’s not the way I processed the video though; to me it looks like hipster irony that backfires by re-enforcing negative stereotypes about FSD & the women who have it.
The video directs viewers to www.ivegotmunchies.com, which features other videos.
But no, this probably isn’t what Allen is referring to.

Maybe Google isn’t the best place to look for medical texts & research. I jumped through some hoops and got onto some online database systems. After several failed attempts on other databases, MedLine finally pointed me probably the right direction:

Waldinger, M., Venema, P., van Gils, A., & Schweitzer, D. (2009). New insights into restless genital syndrome: static mechanical hyperesthesia and neuropathy of the nervus dorsalis clitoridis. The Journal Of Sexual Medicine, 6(10), 2778-2787. Retrieved from MEDLINE database. [I’m linking to PubMed here instead of MedLine, since MedLine isn’t accessible to everyone.]

Alas, even I don’t have access to the full text, and so I’m restricted to the abstract. Luckily, the abstract is useful for this discussion.
Based on what I’m reading in the abstract,
This doesn’t sound very funny at all… Restless vagina syndrome: “You keep on using that word. I think you do not know what it means.”

According to one sex therapist, RVS, or more properly Restless genital syndrome or Persistent arousal syndrome, sounds like it could be a form of pudental nerve damage.

I already know from reading other vulvar pain bloggers, that damage to the pudental nerve is serious – for some patients, it can be extremely painful to live with on a daily basis, and there’s no single cure for it. In this case, if nerve damage is the culprit for RGS, it manifests as hypersensitive genitals, prone to frequent orgasms even in the absence of actual sexual desire. There maybe other causes of restless genital syndrome besides nerve damage as well.

Regardless of the cause, the women involved in the study describe several related symptoms that would certainly cause me great distress –

Of 23 women included in the study, 18(78%), 16(69%), and 12(52%) reported restless legs syndrome, overactive bladder syndrome, and urethra hypersensitivity. Intolerance of tight clothes and underwear (allodynia or hyperpathia) was reported by 19 (83%) women…

To anyone who laughed at Allen’s title, did you even know what you were giggling at?
Why is this funny?
How is this fake?
Would you actually be comfortable having an orgasm in front of a stranger or in a medical setting, as three of the women in that study are reported to have experienced? What if you were sitting on a bus and the woman next to you started going into an uninhibited orgasm, what would your reaction be? Envy, discomfort, leering, slut-shaming… acceptance?
Why, when nothing else provides long-term relief, would this not merit medical research and possible treatment?

That doesn’t sound funny or something deserving stigmatization, nor does it sound to me like a condition that will be pushed onto the general, healthy population at large. I can only imagine how many doctors RGS patients are bounced around to in search of someone who is not dismissive of their concerns. And to be one of those women who lives with such a condition, and to read articles like this, must be humiliating.

PubMed offers just a few journal article abstracts about restless genital syndrome. The dates on the most relevant journal abstracts are all from 2009. That the dates are so recent, is probably why Terry Allen refers to it as “New.”
I get a few more research results when I search for an alternate term, persistent arousal syndrome. This is a relatively new field of study, according to Wikipedia. And, so far, I have been able to find one not-so-new article, from 2002, that details several other case studies of patients with persistent arousal syndrome, some of whom were desperate for long-term relief. One said of her experience, that it “Makes me so upset that I cry, as I cannot function normally; I make mistakes, get very hungry, and do not sleep… I would like the sensations to go away. I want to feel I can make plans and not have the strong sexual desire to make me miserable not knowing if I’ll get satisfied.” (She was also having difficulty reaching orgasm.)

Is Big Pharma really inventing this syndrome, or is could it be that only now is research being done, after years of neglect? I recall that in all my searches, I did not find much scientific research about Vulvodynia from years prior to the 1980s, and most of the books covering the topic in depth only started appearing within the last decade. Was vulvodynia such a controversial topic when the research was new, too? How long was its existence denied by so-called experts and laypeople? Perhaps that is what is going on here.

But really, RGS actually plays a very small role in Terry Allen’s piece. He just needed something that sounded interesting to grab the reader’s attention.

As is often the case, Allen’s article spends a lot of time talking about low libido and orgasm difficulties in women. Allen goes so far as to actually acknowledge that sexual pain exists, but he does not build on that topic. Allen even acknowledges the need to include the patient’s own feelings about their sex life in whether or not a diagnosis of FSD is appropriate. He gets this additional qualifier of personal distress needing to be present from a November 2008 article in Obstetrics & Gynecology, which pinpoints the statistic to about 12% of the population having FSD… but even this study excluded sexual pain in the researchers definition of FSD! I wonder how the figures would change if pain were included in the statistics.
(Also, as a side note, I’d like to point out here that when Jezebel covered that Obstetrics & Gynecology article, writer Tracie sounded shocked that more women aren’t distressed by their sex problems. I’m getting mixed messages here…)

Allen’s biggest concern, and one I’ve seen repeated elsewhere, is that Big Pharma has a vested interest in getting women to feel personal distress about their sex lives. The introductory line to his article goes so far as to claim that,

The pharmaceutical industry wants you to think that if you don’t have sex like a porn star, you’re in need of their drugs.

Even though I’ve been wandering the labyrinth of FSD for awhile now, I can’t say I’ve bumped into any doctors or reputable drug companies that say this to me. I’ve run into porn sites that tell me I should have sex like a porn star, and I’ve overheard conversations my peers have that tell me that. I’ve read that message in magazines and I’ve seen it on TV and in movies. And I’ve even gotten that impression while shopping for new sex toys. Sometimes, even the most sex-positive of sex toy stores, still manges to make me feel like I am somehow not measuring up, because I cannot or will not use one such toy or another, and because I cannot or will not have sex in certain positions.

Big Pharma doesn’t need to make me feel insecure about my sex life.
The culture in which I live does that already. Not only am I distressed by the experience of physical pain, but that pain is compunded by other messages I receive more broadly.
Why doesn’t Allen think about Big Porn, Big TV, Big Magazine and Big Body Image Distortion? For me, these are much bigger culprits I have to learn to navigate around in my sex life than Big Pharma.

Allen’s position is that if Big Pharma can get women convinced that there is something wrong with them for not having the sex life that Big Pharma (or, really mainstream media,) says they should be having, then Big Pharma can step in with cures, and thus make money. As examples, he cites the Orgasmatron, an accidental discovery stemming out of chronic pain treatment which has nonetheless been sensationalized by the media, (I wonder if the media raised the alarms when the Hitatchi Magic Wand first became readily available?) and LexaFem, an oral pill that has no entry on WebMD. (Must be an herbal stimulant or something. Not sure how likely it is that any doctor would prescribe LexaFem to me.) Allen is also sure to note Viagra’s use off-label for some women with FSD, and the dangers of using hormones to stimulate desire. (I’m not sure where that leaves me, as someone who had her hormone levels measured and found to be out of range for a healthy woman in her early 20s following birth control pill use. I’ve already used hormones, including estrogen & testosterone, to treat vulvodynia, although mine was a topical medication. That wasn’t in patch or pill form, but it’s still hormones. Am I supposed to be scared into not using them ever again? I still keep a little expired bottle of prescription hormone gel under my bed as a safety blanket.)

Allen then talks about conflicts of interest in medical research. Some of the studies on FSD have been sponsored by drug companies, including some of the bigger, more widely reocognized studies. It’s definitely worth taking a second look at these company-funded studies and thinking about how much influence that company may have had in the study’s outcome.

There’s two issues I can think of right off the bat that complicate matters regarding research independence. The first is, if these research studies, and others, about FSD including RGS are in fact independent of drug company funding, would Allen still be so quick to call FSD “Fake?” Does independence automatically redeem research? What about if independent studies draw the same conclusions that drug funded ones do?
One problem I myself am faced with is that, with the Restless Genital Syndrome articles I linked to above – I can’t tell from looking at the abstracts, whether these are independent research studies or whether they were sponsored by drug companies. I think I may need the full text to examine the full financial disclosure, if there is any provided.

The other issue I have with funding for research is, according to a recent NVA e-newsletter, some studies on Vulvodynia are also funded at least in part by drug companies. In this newsletter, I see Pfizer gave a financial award to Dr. Pukall of Ontario, Canada, for her research into vulvodynia & neuropathy.
Vulvodynia & pelvic pain conditions are still very much mysterious, misunderstood areas of women’s health. Can we afford to outright reject new research on vulvodynia and FSD broadly, on the basis that it is funded in part by drug companies? Or is it sufficient that patients, doctors and advocates be ready to closely examine these studies for possible bias?

Allen concludes his article with a quote by Liz Canner, mastermind behind the new film Orgasm Inc, which takes a critical look at the Big Pharma’s involvement in FSD. It is becoming increasingly clear to me that even though I don’t particularly want to watch this film and it will probably give me a brain aneurysm, eventually I’m not going to have any choice but to force myself to watch it sooner or later. Canner says,

“Maybe the best approach is not ineffective, over-hyped drugs with nasty side effects, but an end to disease mongering and a strong dose of comprehensive sex education”

Allen then tacks on, “Her film hits female erogenous zones that pharmaceutical fixes can’t find: your brain and your funny bone.”

What sort of sex education does Canner have in mind? How comprehensive are we talking here? In Canner’s sex education class, will we be focusing on the Masters & Johnson model of sexuality, or will we provided a wider variety of sex education materials? Will we be taking a Western point of view or a more global one that looks at many cultures and sexuality?
I ask because the sex education I went through a few years ago, was sorely lacking.
I would hope that Canner’s definition of sex education includes not just a critical examination of Big Pharma, but of the culture in which we live – a culture which both markets and condemns sexual activity. A culture that is uneasy talking openly about masturbation, consent and mutual pleasure. A culture which, in media depictions, often upholds sex and gender roles in sexuality, and leaves many subjects, such as BDSM, porn, open relationships, and certainly painful sex, taboo.

When Canner talks about sex ed, is she willing to spend any time educating the general public on the subject of dyspareunia, which can be (and for me is,) a form of FSD, and whether or not it’s worth treating? Or is dyspareunia to be overlooked in sex education the way it was during my high school sex ed, precisely because it can be a form of FSD?
I wish someone had taught me about vulvodynia earlier on. Would Canner consider that a form of “Disease mongering” too?

As for Allen’s last statement, he himself has to look a little harder to find my funny bone. Or perhaps I’m just one of those legendary dead-on-the-inside humorless harpy feminists, one who takes sexual dysfunction much too seriously.
Regardless, based on what I’ve seen Allen and others write about FSD & Big Pharma so far, I’m not so sure that I myself would find Canner’s film particularly funny. This is yet another example of an article about FSD which, rather than amuse and educate me, distresses & drains me.