Talking about FSD: Listening to Patients

12/23/2009 at 10:03 pm | Posted in Uncategorized | 4 Comments
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A few weeks ago, Alternet posted an unfortunately-titled article critical of female sexual dysfunction and of the pharmaceutical industry, “Restless Vagina Syndrome”: Big Pharma’s Newest Fake Disease, by Terry Allen. I looked at the article and presented evidence that “Restless vagina syndrome” does not mean what you or Terry Allen probably think it means. What it really refers to is Restless Genital Syndrome (RGS,) also referred to as Persistent Arousal Syndrome, Persistent Sexual Arousal Syndrome, or Persistent Genital Arousal Disorder. This causes of this poorly-understood disorder have not yet been pinned down definitively; regardless of the cause, the actual condition Allen referred to manifests as physiological genital arousal & engorgement (sometimes to the point of physical discomfort,) even in the absence of conscious sexual desire and (possibly) frequent orgasms, which may or may not be satisfactory in reliving symptoms. With RGS, these orgasms are frequent enough so that not all of those orgasms are wanted or take place in a safe, socially acceptable setting. I also talked about Allen’s claims about Big Pharma marketing sexual insecurity & questions in research on FSD.

Not too long after, I encountered an interesting post by Ily at asexy beast. Ily, an asexual herself, processed another article on FSD (specifically the controversial diagnosis of Hypoactive Sexual Desire Disorder,) the Women Who Want to Want, quite differently from me. We interacted a little in comments at her blog, and I fleshed out some more ideas here, re: FSD and asexuality.

Most of the time, FSD is an almost invisible topic, except in reference to Big Pharma and the way the pharmaceutical industry markets medications for sexual dysfunction as it relates to libido, arousal & orgasm. The pain category of FSD is frequently overlooked under this umbrella term, and certainly the idea that anyone could ever too much arousal or experience too many orgasms runs contrary to what most people think of as a problem. Restless genital syndrome is so new to research & so misunderstood that authors and so-called experts applaud labeling it “Fake.”
Asexuality is simultaneously almost invisible, and was overlooked completely in the Women Who Want to Want article. You can imagine then (but with a few exceptions, you cannot possibly empathize,) how awkward it must be to be asexual and yet have a sexual health problem that might benefit from medical intervention.

Shortly after all that, I received an e-mail from a person who prefers to remain anonymous. “Uziela” sent me a link to a article, writing, “This article is me.  I don’t mean metaphorically; I was interviewed for this article…”

The article in question is The woman who can’t stop orgasming.

And the topic of the article is a day in the life of a woman who has Restless Genital Syndrome.

To Terry Allen, who referred to RGS and labeled it “Fake,” and others who claim that FSD is a made-up disease, I would ask – are you really willing to invalidate the experiences of women who live with real sexual health problems?

What Uziela did not share at the time of her interview for boingboing, is that in addition to RGS, she also has vulvodynia and identifies as asexual (or demisexual/Gray-A, as she is in a long-term romantic relationship with a cis man.) She contacted me and wishes to address the intersection of these areas in the interest of raising awareness.

Asexuality in and of itself is not a problem. In anticipation of where I’m sure your next thoughts are going, no, Uziela feels that her asexuality evolved independently of the vulvodynia & RGS. She writes,  “I did not become interested in boys during elementary school, throughout middle school, or in high school. I kept assuming that I was a late bloomer, although in high school I asked myself if I was, in fact, a lesbian.” Her sexual orientation is likely not related to RGS & vulvodynia. This means a couple of things: It is possible to be asexual and still experience sexual health problems, and, conversely, if you do have sexual health problems, that in and of itself may not (likely will not) change your sexual orientation, and it may not have anything to do with orientation at all. However, Uziela has run into attitudes that say asexuality in and of itself is a bad thing. “The first therapist who I told that I was asexual told me that it was an unhealthy attitude or something to that effect. I fired her.” This is frustrating, especially in the context of a therapy relationship. Uziela has “Considered seeing a sex therapist at some point just because they might be more familiar with some of this stuff… but it’s a double-edged sword. You never know how they’ll approach my disinterest in sex… ie particular kinds of sex.”

As Uziela puts it –

I think the world can use more sex positivity, always, but there are WAY too many blind spots; I find there’s a huge focus on the belief that all women are straight, want PIV sex, can have it, should seek it, etc.
Some of us are not straight; some of us are queer: gay, or bi, or pan.  Some of us are asexual.  Some of us don’t want PIV.  Some of us are straight AND don’t want PIV and maybe that doesn’t even have to DO with a pain issue.  Some of us are poly.  Some of us don’t identify as women.
We are not all kinky sex goddesses.  Some of us don’t even want to be.
These blind spots can be incredibly frustrating for those of us who are standing in them.  I attended a women’s college, and while I was there, a huge running joke was the fact that the Health Center had this huge sexuality blind spot. In their intake, they would ask if you were sexually active.  If you said you weren’t sexually active, they generally didn’t believe you.  If you said yes, they’d ask if you were using birth control or protection.  If you said no, they’d ask why.  It never occurred to them that a large percentage of our population was lesbian, even though the college was very queer-friendly and out and positive, the Health Center was clueless a lot of the time.

Related to dealing with health service professionals, Uziela told me about her experiences looking for competent doctors. Her experience was,

Mixed.  When I first started having persistent arousal, I didn’t even know what I was experiencing.   The first few doctors I saw passed the buck: the gynecologist sent me to a psychiatrist, who passed me back to the gynecologist.  I saw other psychiatrists, who decided, using strictly checklist criteria and a hammer, that I must be a bipolar nail.  There were three years when I didn’t even know what I was experiencing had a name…

It probably didn’t help that Uziela’s sex education was sorely lacking. Over the years, she and her classmates learned about puberty and heterosexual sex. “We had birth control and condoms… and ‘some people are gay’ but not … ‘how to have safe sex.’ Not … ‘what consent is.’ They did a lot about ‘OMG STDS OMG.'” And her sex ed class did not cover female orgasm (and certainly not RGS.)

It was through the internet that Uziela was clued in to what was really going on in her body. Upon reading an article that finally described what she was going through, Uziela

“Contacted Dr. [Irwin] Goldstein’s office that same day. It took a while to find space for an appointment, but he ran a gamut of tests.  In the process, I learned some interesting things:  He confirmed the diagnosis of what was then (and still is sometimes) called PSAS, he told me I had Vulvodynia/Vulvar Vestibulitis/Vestibular Adenitis, and I found out that I’m missing a major artery in my vagina and have labial fusion, two things I never would have discovered on my own.  The latter two don’t impact my health at all, but it just goes to show how much mystery a woman can have surrounding her own parts.”

However, the doctors were invasive during the diagnostic procedures,

What I remember most was the doppler ultrasound.  Dr. G did an ultrasound of my vulva, and there were SO many people in the room.  Here I am, lying on my back, naked from the waist down, with the soles of my feet together to put my body in the most useful position for the test.  There’s the doctor, the technician, maybe a couple of nurses, a few other people, other doctors and medical students, I think.  It just made me want to laugh.  They all came to see me, because I’m a medical rarity… when I was diagnosed, there were 100 patients worldwide.  Nobody knows how prevalent persistent arousal actually is, because most people won’t TALK about it.  The more doctors know, the better.”

As it turns out, life with RGS isn’t always as pleasurable as fantasizes make it seem to be. Violet Blue may be fascinated by the idea of “the persistent fantasy of unlimited orgasms, without physical barriers,” but life with unlimited, instantaneous orgasm is harder than it sounds. From the boingboing article,

“Every time I do something, I have to evaluate my situation. Where am I? Are there other people around? How well do I know them? What is the likelihood that, if I don’t get someplace private in time, things could get complicated? Can I make noise? (Being vocal isn’t necessary, but it helps release more of the pressure.) I avoid triggers — things like music with heavy bass, vibrations from riding a train or an idle car, cold air, musky cologne, darkness, stress, scary movies, romantic movies, unexpected touch, a full bladder… If my heart rate shoots up too high for too long, I flare up. I avoided exercise and gained a lot of weight. One time, I was hugging a male relative and I felt an orgasm arise… Now, I try to avoid hugs in general unless I feel ready for them.”

It’s a lot to have to take into consideration, and it leaves Uziela with feelings of vulnerability:

“One thing I’ve noticed is being this aroused long term makes me think like a prey creature.  I note within myself a sense of paranoia — that people will discover me when I lose control, that this will incite them to the point of an angry mob and they will visit violence upon me.  I realize this is rather unlikely; people are more likely to be uncomfortable and move away, but since most humans seek privacy and safe places for sex, apparently my brain considers me to be in a chronically vulnerable state.”

Uziela is not the first person to describe having to take these outside factors into consideration before going about her day due to RGS; an earlier article from 2002 describes a case study where for one woman, “The problem [RGS] made it difficult to get through the work day, and prevented her from leaving the house otherwise.”

Interestingly, the boingboing article includes one line which says, “Because of a vulvar pain disorder I have that sometimes comes with PSAS…” [emphasis mine.] Uziela has confirmed that she has vulvodynia. This is the first time I’ve heard RGS connected to vulvodynia, or more correctly, vice versa – first time I have seen vulvodynia connected to RGS. I can definitely imagine that RGS could be connected to pudendal neuralgia, which is correlated with vulvodynia. During our conversation, Uziela described experiencing some mysterious spasm symptoms which may be related to restless leg syndrome or an overactive bladder. But that RGS and vulvodynia have a relationship, comes as something of a surprise to me.
Yet I know that vulvodynia frequently does overlap with other chronic conditions, such as IBS, IC, fibromyalgia, and more. That overlapping of chronic conditions happens often enough so that the NVA is working with a website dedicated to understanding overlapping conditions. And indeed, Uziela does have some other chronic conditions besides RGS & vulvodynia that need simultaneous management, including fibromyalgia and PCOS.

However, it is not clear what the real cause of Uziela’s RGS is. I asked if she had any clues as to what caused her RGS –

“The best guess I have is the hormone onset. I was on Provera [oral pills; not the depo provera shot] to regulate my cycles. I discontinued in … October or November.  In December, i started having symptoms… And I was 16(?) when they started giving it to me.”

There are some additional hormonal factors at work – “I get my [hormone] levels checked once or twice a year.  I know I don’t have low testosterone; although mine’s in range of what’s considered normal, since I manifest PCOS anyway, my doctor thinks my testosterone might be too high for *me* — and given that my sex drive is rather atypical, I know it’s not a hormonal deficiency.”

My own vulvodynia issues may be related to hormones as well, at least a little; I had been on oral birth control pills for about two years at the time of diagnosis. I have seen a study which suggested that hormonal birth control may sometimes be somehow related to vulvodynia later on in life, and that 20/20 television segment on vulvodynia (which was never named as such in the segment for some reason…) birth control pills were explicitly mentioned as a possible cause. I have also heard similar anecdotes from other women with vulvar pain. (Still, I don’t want to panic any readers. I know many, many women use hormonal birth control pills for years without complications. My own sister has been on birth control pills for over ten years.) How hormones could play into RGS however is not as clear to me.

What limited exposure to literature on RGS I’ve had before, suggested that it may be related to damage to the pudental nerve. And during her exam with Dr. Goldetein, the doctors did find signs of  nerve damage. But where that damage came from, is a mystery – Uzelia does not remember ever having a serious injury to that area in her lifetime.
Uziela shared with me that there are several other possible causes for RGS; some proposed areas for further research include “Neurologic – Central, [brain and spinal cord changes or injury,] Neurologic – Peripheral, [changes or injury to local nerves in the pelvis,] Pharmacologic, [SSRI withdrawal may be related,] Vascular and Other.” These areas of investigation merit some urgency, as many patients are distressed from having their lives interrupted by  recurrent, invasive sensations that are rarely fully resolved.

Despite the persistent arousal symptoms and frequent orgasms, Uziela does not have intercourse, “Partly due to the asexuality (I have no desire for it) and partly due to the vulvodynia (I see no reason to seek out pain).  My sexual female friends tell me that when a female gets sufficiently aroused, they have a nigh-irresistible drive in the direction of penetration.  I have never experienced this, which is part of what drove me to decide that even though I seek sexual stimulus as a result of PSAS/PAS/PGAD/RGD, there’s definitely an aspect of asexuality there.” She did mention to me that some asexuals can and do engage in sexual activities including intercourse, but, “It’s a spectrum… most of the more vocal asexuals I see in the community are in one of two categories:
‘ew sex no / don’t touch me…’ ‘meh sex, but I don’t mind doing it.”

That Uziela does not have sexual intercourse with her partner does not impact the quality of their relationship. Like myself, she is in a long-term, long-distance relationship, and she and her partner have occasional visits together. Her partner is aware of the asexual community, and they are both careful about respecting each others’ boundaries. “In the early stages of our relationship, we had discussions regularly on the subject of boundaries, both his and mine.  We made lists of activities: Do, Don’t Do, and Try Once.  (This description probably makes me sound significantly more sexually adventurous than I actually am.)”
Ironically, Uziela may now be more interested in sexual activity than her partner – “In the past few years, he’s hit andropause, which is a true irony, because now he’s even less interested in sexual activity than I am!  (Although I am not “driven” to sex like the average person, I, like many patients, find that the sexual attention of a partner can be more productive in at least temporarily resolving persistent arousal than anything we can do ourselves.) This is a delicate situation, as Uziela must be careful not to pressure her partner for sexual activity, and vice versa.

Note what reason was not cited as a reason for passing on intercourse: relationship or partner dissatisfaction. In fact, Uziela says, “I wish I could see him more often; sometimes I think he is the closest another person has ever come to truly understanding me, and I mean this in every sense of the word.” It may also be worth noting here that Uziela was not in a relationship at the time of the vulvodynia or RGS symptom onsets. So in this case, Uziela’s sexual health problems are not due to an inept or insensitive partner. To insist otherwise would be to place blame and create needless relationship stress.

Currently, Uziela manages RGS mostly by avoiding triggering situations, and is able to manage the vulvodynia since she only experiences pain on contact.(Unfortunately, that means pelvic exams can still be painful.) Her experience of orgasm is more or less intense depending on how long she has been in a state of physiological arousal. In the right situation, some of these orgasms can be enjoyable, but there is a caveat just to mention this: “There’s a stigma about talking about that as it causes people to dismiss our suffering and it gives the impression that it’s not a Problem when in fact, it still is.” One of the problems is that Uziela has little to no control over what situations she is in, so sometimes orgasm can be frightening or dangerous. Most of the time, orgasm returns Uziela to a “Baseline” state but does not completely resolve the RGS symptoms.

Despite the challenges she lives with, Uziela would prefer not to have a major, abrupt medical intervention for her RGS. Some treatments are more extreme than others, and all of them come with potential side effects, which can be serious. While we were talking about life with sexual health problems, we both mentioned that even when symptoms are managed, they could still exist on some level, just below the surface. It’s something we are likely to live with long-term, and a sudden disappearance of symptoms would be unnerving. Uziela also has some concerns about living with RGS long-term, as there have been other patients who find it difficult to reach orgasm over time, and thus are not able to find even temporary relief. Simultaneously, finding doctors and friends who are aware of the existence of such sexual health problems, and are willing to speak frankly about them, is in and of itself a challenge, and one that patients like she and I will continue to navigate long-term. At this point, Uziela’s RGS is less invasive and less intense than it was a few years ago and because of this, she is able to focus on other areas of her health and life.

Note: comments to this post will be under additional scrutiny & moderation. The article allowed some comments of a dismissive and/or presumptuous nature to go through which will not be tolerated here.

Talking about FSD: how not to (part 2)

11/24/2009 at 7:08 pm | Posted in Uncategorized | 4 Comments
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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, 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.

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