Doctors debate dyspareunia part 4: The debate continues
09/19/2011 at 10:51 pm | Posted in Uncategorized | 3 CommentsTags: academia, experts, female sexual dysfunction, Feminism, FSD, journals, language, medicine, pain, picture post, sex education, sex is not a natural act, sexual dysfunction, sexual health, social construction, vulvar vestibulitis, vulvodynia, what
“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?
[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.
Statistics and FSD (part 2 of 2)
06/14/2010 at 9:55 pm | Posted in Uncategorized | 5 CommentsTags: experts, female sexual dysfunction, flibanserin, FSD, health, journals, media, medicine, sex, sexual dysfunction, sexual health, statistics
Last week I shared with you my interpretation of Sexual Dysfunction in the United States, a peer-reviewed journal article about sexual dysfunction that appeared in the Journal of the American Medical Association in 1999. The study is widely cited to this day, though it remains a source of consternation in discussions of sexual dysfunction due to some major problems the study had. To refresh your memory, one of the researchers involved with the article had financial ties to Pfizer (the maker of Viagra) and the statistics on the prevalence of sexual dysfunction (43% for women) may have been overstated, because the study did not take participants’ personal distress or lack thereof into consideration. This is not the only research paper on sexual dysfunction but it’s notable because it’s got the backing of the AMA and because of its scale, both in terms of sample size and how big of an impact it had on sexual dysfunction treatments.
But time flows like a river… and history repeats…
Almost 10 years later, another big research study on sexual dysfunction was published in the American College of Obstetricians and Gynecologists journal, Obstetrics and Gynecology. The article, Sexual Problems and Distress in United States Women: Prevalence and Correlates, is another one that’s free and available to all who have an internet connection. This study deals exculsively with female sexual dysfunction, and revises the prevalence of FSD to a much lower rate within the US – in the end, the prevalence rate is estimated to be about 12%. We’re going to be feeling reverberations from this study for quite awhile longer, although I have not seen as much criticism of this study as I did with the JAMA one. Still, like the JAMA article, there are a few potential problems with Sexual Problems and Distress in united States Women we should take a good hard look at.
First, the study was sponsored by Boehringer Ingelheim International GmbH – that’s the same company that is working on producing Flibanserin, a highly controversial drug that may increase women’s libido, and thus address one of the more common types of female sexual dysfunctions. You may have seen some hoopla about Flibanserin on the blogosphere starting around late 2009, and it hasn’t let up. In fact, I’m sure there’ll be more media hype and handwringing as the FDA considers approving Flibanserin. In fact, I know for certain that there’s more hoopla going on right now, because the New View Campaign has organized an online petition to the FDA to block approval of Flibanserin… Well-intentioned as this may be, it’s something that I cannot get on board with and I do not support.
But what Boehringer’s involvement with this study means is that, almost 10 years after the JAMA article, there’s still a conflict of interest in studying FSD! Additionally, all five researchers in this study had financial ties to pharmaceutical companies, as disclosed on p. 970.
Ultimately those conflicts of interest described above and in the JAMA article wind up hurting women with FSD, since such conflicts are taken as a sign that FSD simply must be fake and a source of E-Z money for big pharma. From there, you’ll get pundits, doctors & journalists seizing upon those conflicts of interest and dismissing what women with FSD say.
Unfortunately in this day and age, I am pessimistic that we will see many studies on sexual health that are completely free of commercial taint. Dr. Tiefer in Sex is not a Natural Act looked to academia as a safe haven for research to continue without conflicts of interest. Educators and professors can still apply for research grants, and generous donors still donate, but I have lost access to many scientific journal databases that I was able to get into while I was still in school – because there wasn’t room for all the databases in the school’s annual budget. Raises, new hirings, budgets, and promotions at my alma mater were frozen last year. Plus, academia brings its own set of institutionalized problems. So as far as academia being the alternative solution – well I guess I’m jaded because I’m not entirely convinced about that, either.
For a contemporary real world example of conflicts of interest in the world of women’s health, just check out this About page for the Overlapping Conditions Alliance. At the bottom, we can see that it’s sponsored in part by Pfizer. As someone who stands to benefit from this campaign, I like that this organization went to Washington D.C. to bring attention to women’s chronic pain conditions. But I can’t ignore the little Pfizer logo. I’m not sure we’re going to be able to be completely free & clear of private funding in producing research that impacts public health, and I don’t have a solution to that. I know to take research papers with private ties with a grain of salt, but that’s all I know what to do right now.
The second major problem I can see with this new study is that, this study on FSD deliberately excluded pain!
WTF?! It’s a study about FSD, how can you exclude pain from any definition of FSD? How and why would you do that? Here’s the stated reason why: “Sexual pain problems were not assessed, because a physical examination is required for evaluation of dyspareunia“ (Shifren et al, 2008).
WTF is this?! Wtf. What, you can’t listen to women who tell you that sex hurts? Why can’t you take their word at face value? If I tell you, “It hurts when I go to have sex,” I mean exactly that! Wtf, I need a doctor’s note to verify that my fucking crotch hurts?! Why won’t you listen to me?!?! Why doesn’t anyone believe me?! News flash: Not all women with dyspareunia can afford to go to a doctor, and often enough when they can afford to see one, the doctor dismisses any and all sexual complaints as “All in your head!” I’m not making it up, this is real! Why don’t you care about this?!
So yeah that’s… if you ask me, that’s a big, huge, major problem with the study. Reading that line threw me into rage-rage-rage mode. The researchers cite some earlier study, Assessment and management of women’s sexual dysfunctions: problematic desire and arousal when they make that dismissive claim, but of course I can’t access the full text of that study to see if that’s what Basson, Brotto et al really say. Why would you say that? I’m seeing the study cited only looked at arousal, desire and orgasm as well, so what, did they just decide not to look at pain too because it was too hard or something? The cynic in me thinks to myself that the current researchers have no interest in sexual pain because Flibanserin, the drug Boehringer was working on, will probably not address pain. Pain will not be looked at due to lack of profit, or something.
This makes no sense. The problematic JAMA study said that 7% of women had sexual dysfunction under the pain category, the Goetsch study found that something 15% of women going to a gynecology clinic met the criteria for vulvar vestibulitis. It’s not exactly a majority of women, but why would you ignore a significant chunk of the population like that? Like, why is pain irrelevant for this discussion of FSD? Seriously. You think pain never influences other areas of sexuality, like desire and orgasm?
ANYWAY, there’s two potential problems with the study right off the bat. So what does the the research say, anyway? What, if anything, can we learn from Sexual Problems and Distress in United States Women: Prevalence and Correlates?
There were some improvements defining FSD since the JAMA study was done all those years ago. Sexual Problems and Distress in United States Women: Prevalence and Correlates looked at how often sexual problems occurred, and took participants personal distress into account. Under current guidelines by the American Psychiatric Association and FDA, personal distress must be present in order to make a diagnosis of sexual dysfunction. Not everyone feels distressed when they experience sexual problems. This is one of the reasons that the rate of FSD was found to be much lower in this study (about 12% in the end) compared to the JAMA study (about 43%.) Is this revised, lower statistic satisfactory to those who have registered complaints about the 43% number? Is that sufficiently low enough to acknowledge as Real?
The way the research was conducted was by survey. Researchers mailed out surveys to over 50,000 households and got responses back from 31,581 women. (I know, and the researchers were also aware of, there are some concerns about asking participants to self-screen themselves in this way.) Unlike the JAMA study, this one did not exclude women who did not have recent partnered sexual activity. The survey included 14 items about problems with desire, arousal and orgasm, which you could answer on a 5-point scale for frequency. Personal distress was measured with 12 items about the participant’s feelings, like guilt, worry, frustration, unhappiness, etc. You could have a personal distress score ranging from a low of 0 to a high of 48. If your score was 15 or above, you were considered to have sexual distress, and if you reported a sexual problem AND scored a 15 or higher on the distress scale, then you were considered to have FSD. (Shifren et al, 2008). That means it was possible to report distress sans problems, and if that was the case, you did not have FSD according to these researchers. You needed to have both distress AND a problem at the same time. One possible alternative to this classification I can think of would have been to simply ask participants whether or not they considered themselves to have sexual dysfunction. I don’t know if this alternative would have yielded better results, but I like leaving room for self-identification.
Interestingly, the results found that the rate of self-reported problems regardless of distress was around 44.2% (Schifren et al, 2008.) That’s not too far off from the 43% found in the JAMA study. This is what I was referring to towards the end of my last post, when I said we’d see a similar number again. Problems with low desire were reported most frequently, then low arousal and problems with orgasm. Another interesting note, the survey asked women about how satisfied they were with their orgasms – check out the little footnote under table 2 on page 974. However, not all of the participants were distressed by a problem, and so they did not all have FSD. They just had problems. Which maybe weren’t even all that big of a deal or considered a problem at all to the individuals – just to the researchers for the purposes of this study. Sometimes stuff happens. Sexual distress was found in 22.8% of participants, but not all of those participants experienced a sexual problem. And sexual problems + distress, the combination required to come to a conclusion of FSD, was found in 12% of the respondents. (Schifren et al, 2008). These are the overall results; the results are more specific if you break it out by age.
The researchers went on to break out the results by demographics like age, education and health. Women with good self-assessed health were less likely to experience distressing sexual problems. Some health problems that were more likely to be associated with FSD were depression, thyroid problems, anxiety and urinary incontinence. (Schifren et al, 2008). I’m wondering if use of antidepressants influenced the response, since sometimes antidepressants can cause sexual side effects, but then, so too can depression.With urinary incontinence, I’m wondering if the pelvic floor muscles were weaker in women who experienced this? In evaluating sexual problems across race, shown on table 4, white women were the default against which other races were measured. I think there may be something problematic with that.
The likelihood of feeling distressed by more than one of the three sexual problems in question was low, which surprises me. Distress + low desire + either low arousal OR problems orgasming only happened to 5% of respondents, and distress + problems happening in all 3 areas of interest only happened to 2.3% of women. (Schifren et al, 2008) I was shocked to read that; honestly I was expecting there to be more overlap. I’m probably thinking of the overlap sometimes seen between vulvodynia and other chronic health problems like IBS, IC, fibromyalgia, etc. So then I’m wondering of course, what percentage of women would report feeling distress accompanied by all four problems – the fourth being pain? I wonder, how did sexual pain influence the rates with which women reported low libido, arousal, and orgasm… these things can overlap too, you know. If only the researchers had asked about it…
Furthermore, if theoretically a woman reported having sexual pain plus some other problem like low desire, but low desire is in and of itself not acknowledged as a genuine problem by doctors and experts, then what is a patient’s course of action? Address the pain only by whatever means necessary without touching the desire? Or is it then acceptable to extend a medical option to address desire (or orgasm, or self-lubrication) as well? Is the expectation that the woman’s sex drive will naturally increase with non-medical intervention? What if it doesn’t, but she wants it to?
Unfortunately this study does not tell me the % of women who sought medical assistance for their sexual concerns. Recall from the JAMA study, that about 20% of women had sought medical assistance for sexual problems. I’m very curious to know which 20%. If 20% of women in the JAMA article sought medical assistance, and 22% of respondents to this survey reported feeling sexual distress (which may or may not have been accompanied by a complication,)… how much overlap is there? How many of those 20% who sought help for their problems in the JAMA article would meet the criteria for FSD described here?
So there you are… That’s another big study on FSD, and more recent to boot. But don’t just take my word for it, it’s available online so you can see for yourself. But again – no pain. The researchers had zero interest in sexual pain for this study so I have no idea how the results would have changed, if at all, if pain were taken into consideration. And again, unfortunately, conflicts of interest.
Ultimately, women with FSD will be directly effected by research and statistics, as well as by subsequent handling of research findings, say by the media or pharmeceutical research companies. There is also overwhelming concern that women without FSD will be impacted by these journal articles. These concerns are not invalid either – concerns about disease mongering, pathologizing natural fluctuations in libido, abuse at the hands of overzealous doctors and cruel partners. One thing that worries me to this day though, is that in these sorts of conversations, I’ve frequently seen women who would genuinely benefit and who maybe genuinely need medical intervention to address problems in their sex lives, become invisible or dismissed, either due to a relatively small proportion of the population meeting stricter criteria for FSD (and thus not be worth worrying about,) or because these women have bought into the media hype.
I believe that women with FSD have the potential to gain improved treatment through well controlled studies, but when the methodology or numbers are skewed or questionable, problems ensue. It’s not just problems with the numbers themselves, though that certainly is worth looking into. Media response matters, too.
Statistics and FSD (part 1 of 2)
06/07/2010 at 7:14 am | Posted in Uncategorized | 6 CommentsTags: experts, female sexual dysfunction, FSD, health, journals, media, medicine, sex, sexual dysfunction, sexual health, statistics
I’ve been meaning to sit down and write these posts for a long time. We interrupt our hopefully-continuing series on BDSM and FSD to bring you statistics, and to look at some problems with the statistics. Although there are a number of studies on sexual dysfunction, for now we’re going to look at two controversial studies, one from the Journal of the American Medical Association and one from Obstetrics and Gynecology. I was hoping to present both of these studies as a unit, but once this post approached the 2,000 word mark, I had to split it up. I will present part 2 shortly.
I notice when I’m reading blogs and books about FSD, some numbers, statistics and claims about the prevalence of sexual health problems keep on popping up. I keep seeing some numbers and themes over and over again.
When I think of sexual dysfunction journals and statistics, my first thoughts are of a study published in the Journal of the American Medial Association in February 1999. It’s a pretty famous journal article and it caused a lot of controversy when first published. You may already be aware of the article yourself; I knew about it before I actually sat down and read it. The article, Sexual Dysfunction in the United States, is available in full text online for free. We can read it together, and we probably should, since, as this page on the Vaginismus Awareness Network points out, a lot of people cite it without having read it. Let’s fix that.
Here’s what I knew about Sexual Dysfunction in the United States before ever siting down and reading the article myself: One of the authors had financial ties to a big drug company, so there was a major conflict of interest with his involvement in an article that talked about sexual dysfunction. And the article took a very broad, sweeping definition of sexual dysfunction. The authors did not factor personal distress into the equation. I knew these things, because other journalists and sexologists like Dr. Tiefer had said as much elsewhere.
That’s what I already knew about the JAMA article. Is that enough? Is that all I need to know about it? Can I just leave it at that and not worry about it? Nah, I can’t just leave this stuff alone. I had to see it for myself. One caveat to keep in mind though, I’m not a statistician. Although I took several statistics classes in college, it’s been a long time since then, and I did my degree is unrelated to the statistics of interest today. So when interpreting numbers and tables, I tend to rely on the conclusions & discussion sections provided by study authors – as well as critiques provided by experts who have read the studies. Fortunately, you can double-check my work since I’ll be providing my sources.
Like I said, a major problem with this study, is that one of the authors, Edward O. Laumann was connected to pharmaceutical giant Pfizer, the maker of erectile dysfunction treatment Viagra. Viagra was already out on the market by the time Sexual Dysfunction in the United States was published, having received FDA approval about one year earlier. Laumann had served as a member of Pfizer’s Scientific Advisory Committee since 1997, and had connections to other big pharma companies like Merck and Eli Lilly, too. That means that right off the bat, Laumann’s involvement in the study was a big conflict of interest. To make matters worse, Laumann’s connection to Pfizer wasn’t explicitly stated at the time of the article’s publication in February. It wasn’t until April 1999 that a correction was printed in JAMA. That doesn’t seem to have hurt Laumann’s career too much however; in doing a quick PubMed search, I see that Laumann is still involved with sexual dysfunction research.
The other problem is that this study may have overestimated the prevalence of sexual dysfunction in the US. This is the study from which we get the statistic that says about 43% of women have sexual dysfunction. So where does that number come from?
The statistics and conclusions in the JAMA article are based on the National Health and Social Life Survey (NHSLS,) a 1992 US study of 1410 men and 1749 women. The NHSLS survey was conducted using in-person interviews. In order to be eligible for the survey, you had to have had at least one sex partner within the previous 12 months, so 139 men and 238 women were excluded due to lack of partnered sex during that time period. Everyone interviewed had to speak English fluently, and most people interviewed were white. Everyone had to be at least 18 years old, and the cutoff age was 59. The JAMA study does not tell me if gender identity was taken into consideration, but as near as I can tell the researchers were interested only in participants’ biological, binary sex. If you’ll look at the tables in the study, you’ll see then that in the end around 1480 womens’ and about 1250 mens’ responses were included in the survey analysis. The math doesn’t quite add up perfectly, and some of the numbers in specific categories of interest in the tables differ a little – 1486 women here, 1477 women there. I don’t know why that is but with numbers that big, little variations may not be significant.
Now unfortunately I do not have the full text of the NHSLS survey yet so I can’t see for myself what questions the interviewers asked participants, and I can’t see for myself the details about how the conclusions were drawn. I have found books that go into detail about this study. If you’re interested, look for The Social Organization of Sexuality: Sexual Practices in the United States for technical details or Sex in America, which was written for a general audience. Personally I think I would go for Sex in America first since it’s the less technical of the two, but that’s a ways down the road since I believe I’ve got quite enough on my plate to keep me writing about FSD for a long time. (So long as I don’t burn out first. Pace yourself, K!)
According to Sexual Dysfunction in America, there are seven symptoms of sexual dysfunction. Keep in mind though, the authors did not factor in the degree of symptom severity, and did not factor in how individuals felt about their sexual problems. (Some people have difficulty maintaining an erection or researching reaching orgasm, and are comfortable with that.) The results of this research was based on yes/no responses.
Five sexual problem symptom areas were common to men and women:
- Lack of or low desire for sex
- Arousal difficulties (erection problems for men; lubrication problems for women)
- Difficulty orgasming
- Performance anxiety
- Lack of pleasure during sex.
There were two additional areas that were sex specific:
6. Painful sex (women only)
7. Premature ejaculation (men only)
The article says, “Taken together, these items cover the major problem areas addressed in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition” (Laumann et al, 1999). Remember, the DSM-IV and soon-to-be V includes sexual dysfunction. The criteria for sexual dysfunction in the DSM-IV is strongly influenced by the Human Sexual Response Cycle according to Masters & Johnson. It’s interesting that the NHSLS asked questions about anxiety and lack of pleasure during sex, which is a little more comprehensive than the four categories of sexual dysfunction (pain, low libido, low arousal, difficulty orgasming) generally recognized. However, in the Results discussion of the journal article, the authors mostly focused on the DSM’s definitions of sexual dysfunction. The researchers did not inquire about restless genital syndrome (maybe because there was even less research about it back in 1992?)
The article authors came to a number of conclusions. Do read the article when you have a moment if you’re interested in all of them. One social construction criticism of the medical model of sex is that medicine is obsessively genitally-focused, however a lot of the study conclusions seem like they would fit in perfectly fine with a social construction perspective of sexuality. Some examples: The researchers found that higher education was associated with lower rates of sexual dysfunction. But as you probably already know, higher education is also closely tied into class status. And people with higher class privilege have a better chance of getting adequate pay and access to medical and child care. The authors didn’t get into that to much, except to say that “Deterioration in economic position, indexed by falling household income, is generally associated with a modest increase in risk for all categories if sexual dysfunction for women but only erectile dysfunction for men” (Laumann et al, 1999). So what about families that have low income to begin with? Being married was also associated with lower rates of sexual problems – I’m thinking maybe because these people had a long-term experienced sex partner? (And what about same-sex couples, most of whom cannot legally marry in the US?) Women with chronic health problems were more likely to experience pain.Victims of sexual assault and sexual abuse were more likely to report sexual problems, so the effects of abuse can last for a very long time. Fewer black women indicated sexual pain than white women, which is consistent with what I’ve read about vulvodynia before, but it wasn’t a zero response rate.
The authors used a statistics tool, latent class analysis, to come up with the statistics on the prevelance of sexual dysfunction in the US. “These results indicate that the clustering of symptoms according to syndrome can be represented by 4 categories for women as well as for men” Laumann et al, 1999). This is what I meant when I said that in the results section, the authors’ conclusions were very similar to what’s listed in the DSM-IV. Similar, but not quite the same…
For women, the results were:
- 58% no problems
- 22% low sexual desire
- 14% arousal problems
- 7% pain
And for men the results were 70% no problems, 21% premature ejaculation, 5% erectile dysfunction and 5% low sexual desire.
Additionally, tables 1 and 2 presented the statistics for affirmative responses to the questions about sexual anxiety, lack of pleasure during sex and difficulty orgasming for men and women, broken out by various demographics like age and ethnicity. The description for tables 1 and 2 provided on page 540 does not say anything about whether latent class analysis was used. I’m open to correction on this, but I would say to a professor, I think it wasn’t used with tables 1 and 2.
Tables 1 and 2 are a little hard to read; pay attention to the note underneath table 1 that explains, “Percentages are derived from respondents in each category, and the total number represents those who responded to the questions” (Laumann et al, 1999). I found it easier to understand if I went by the total number of responses. For example, the total number of women who said they felt anxious about their sexual performance was about 183 (78 of these women were between the ages of 18-29, 57 between the ages of 30-39, 36 between the ages of 40-49 and 12 between 50-59,) and that’s from a total sample size of 1482 for this question. The reason I emphasized about in the last sentance is that I double-checked my math on this question through some of the other categories like education level and ethnicity and the total number of affirmative responses went from 180-183. I don’t know why there’s a slight variation.
The reason I said I think tables 1 and 2 did not use latent class analysis is that, I broke out my calculator and added up the number of affirmative responses to the NHSLS question about “Trouble maintaining or achieving an erection” (Laumann et al, 1999.) Keeping the above paragraph in mind, the survey results said about 127 men reported erectile problems, out of a sample size of 1244. But 127/1244 = about 10%, not 5%… So the math and the category grouping is weird. I tried it again with the question about women’s sexual pain and came up with about 228/1479 = about 15.5%, not 7%. So I think I need help with this LCA stats tool. I’m not getting how we’re going from one stat to the final conclusions about prevalence. It’s like you take the survey result statistics, run the numbers through the LCA machine and come up with different numbers.
This latent class analysis tool bugs me. I mean, look at what the authors say about what it is, and then they are all like, “A more detailed discussion of this method is available on request from the authors” (Laumann et al, 1999) and I’m like – it’s so overly complicated. Could you be any more obtuse? I wonder if it would make any more sense to me if I’d majored in stats.
But in the end, the study authors did not talk about these three responses much anyway.
So the authors conclude that “The total prevalence for sexual dysfunction is higher for women than men (43% to 31%)” (Laumann et al, 1999.) The authors explicitly use the words “Sexual dysfunction” here, not “Sexual problems” or “complications” or something else. I also can’t tell what, if any, steps the people who answered “Yes” took to ameloriate any problems. 20% of women and 10% of men did look for medical advice to address their sexual problems.(Laumann et al, 1999).
But back to that statement about the total prevelance for sexual dysfunction – That’s where a lot of the controversy around sexual dysfunction stems from – the study didn’t factor in personal distress. Sexual dysfunction was arbitrarily declared for anyone who had answered “Yes” to whether they’d experienced one of the sexual problems of interest. That’s a problem – it didn’t leave room for self-identification. The use of language in the study is a point that journalists bring up over and over in order to dismiss FSD as entirely fake. Or to make the point that the numbers of sexual dysfunction are so high in this study but there’s no way it’s really that high. Reading between the lines, the gist I get from journalists is that, sexual dysfunction happens to few enough people so that those few people don’t really matter, as evidenced by journalists devoting very little (if any) column space to the opinions of people who actually have sexual dysfunction, and additionally evidenced by sexologists who crack jokes about people who have sexual dysfunction. For all the debate on female sexual dysfunction, these discussions about it rarely center women with FSD.
There’s something else about the study results. I’m getting mixed up with the stats. 22 + 14 + 7 = 43 and 21 + 5 + 5 = 31, yes. But to come up with that 43% or 31% statistic, each category had to be discrete – not overlapping. But in reality you can have more than one sexual dysfunction problem – they’re not always discrete. Problems can overlap. It is not clear to me whether the researchers factored in overlap or if each category was completely discrete. Plus again, keep in mind, these results came from yes/no responses instead of the degree and/or frequency of symptoms or the distress the symptoms caused.
Note also: There’s no category for lack of orgasm for women. I think that’s an unfortunate omission and I can’t figure out why it was left out. (The cynic in me thinks, “Lack of interest.”) There is no category of pain for men however this may be because, I have read elsewhere, men do report sexual pain much less frequently than women. Less frequently, but still more often than never. The authors didn’t make a category for lack of pleasure during sex, even though the NHSLS asked about it.
However, even with these problems in mind…
I am not yet ready to completely dismiss the results of this study. I am ready to take it with a heaping tablespoon of salt. It’s got flaws, yes, but the data wasn’t made up out of thin air either. The people who were interviewed said “Yes” that they experienced a sexual problem, although they may not have felt it was a big deal. But some difficulties were there from time to time. It really happens, and I’m hesitant to dismiss that. And I cannot dismiss FSD as entirely fake, seeing as I still have it over here. It’s still real. It may not be a dysfunction to all 43% of the respondents who answered in the affirmative that they’d had a sexual problem over the last year, but for some of those respondents… yeah, it really was distressing.
One other interesting feature about this 43% statistic is that I saw a very similar number reported elsewhere, almost a decade later. This is not the last time we’re going to see the number of women reporting sexual difficulties (though not necessarily dysfunctions) somewhere around 43%. There really may be something behind this.
So there’s one big, famous study on female sexual dysfunction for you. It’s “The first population-based assessment of sexual dysfunction in the half-ceutnry since Kinsey et al,” (Laumann et al, 1999) and it treats sexual dysfunction very seriously, but it’s got some problems that need to be addressed. Unfortunately, ultimately the weaknesses in the study aren’t helpful for people who live with sexual dysfunction.
Next week, barring unforeseen circumstances, part 2.
Talking about FSD: how not to (part 2)
11/24/2009 at 7:08 pm | Posted in Uncategorized | 4 CommentsTags: 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.
I will be your lab rat for the evening
09/30/2009 at 7:05 pm | Posted in Uncategorized | Leave a commentTags: experts, female sexual dysfunction, FSD, health, journals, medicine, pain, research, sexual health, surgery, vaginas, vestibulectomy, vulvar vestibulitis, vulvodynia
My specialist’s office called me the other day. Or rather I should say a researcher from the office, to see if I was willing to participate in a vulvodynia study.
I don’t think I can say what questions were asked or what my responses were, since I don’t want to break confidentiality. But, I answered the questions honestly to the best of my ability. It was pretty simple. I think I see where we’re going with this study. I hope my answers, aggregated with other ones to produce statistics, help someone.
This study is only available to women who have had a vestibulectomy, so, chances are you can’t participate in this one.
Don’t feel left out though. The online support groups are helpful for this kind of thing – finding current research & networking – but the trade-off is that it exposes your identity to your friends…
But there’s some studies posted in there.
On one such group, the maintainer posted a link to this site: Dr. Laura Clark – and that site has links to 3 surveys. One is for women with vulvodynia, one is for women without vulvodynia, and one is for partners of women with vulvodynia. I participated in the first of those studies, and my boyfriend completed the last one. Anybody without vulvodynia reading this can think about doing the second one. I’m not sure where Dr. Clark is going with that second survey.
And I’m not sure yet which journal (if any) these results will be published in.
So yes. I am a statistic.
Fine.
It was nice to talk freely about having had vulvovaginal surgery without being judged & condemned.
Things that make me angry – Exploiting vulvodynia patients
07/14/2009 at 6:17 pm | Posted in Uncategorized | 2 CommentsTags: books, experts, female sexual dysfunction, FSD, health, journals, marketing, medicine, pain, sexual health, vaginas, vulvodynia, yeast infection
What would you say if I told you there was a single, definite cause for vulvodynia? What would you think if I told you that, in finding the cause, there was also a prevention or another possible treatment available?
Would you say “That’s too good to be true?” Would you look through the years worth of messages posted to online support communities – the discussions of pain, possible causes, treatments and hope? Would you think about the other patients you know online (and maybe even in person) and wonder if all this could be caused by a single common factor? Would you think back to the journal articles & books you picked up along the way?
What would you do?
Because I know I would do all those things – say “It’s too good to be true,” then reflect on what other patients and doctors are saying, thinking about their experiences. I would remember the quetions as to the origins of this and related conditions, and sometimes, why there is some overlap. I would (and did) browse through the books & journal articles I’ve accumulated over the years, and I questioned whether this syndrome could have a single root cause, when so much of the literature and real life experience allows for plenty of wiggle room.
And I wondered, who could have discovered a single root cause? A researcher? One of the vulvovaginal specialists? A team of patients? Did CureTogether actually find The Cure?
No, the discovery of a single root cause for vulvodynia was found by a semi-retired doctor of philosophy and author of diet books.
Wait, what?
Needless to say, I, for one, am skeptical.
Hmm…
Let’s take a look at this idea and what, if any, analysis we can make of it.
It all begins with,
Doctors just love giving medical conditions fancy names with Latin roots to make us tremble when they give the diagnosis. Vulvodynia is one such word.
And right away things look a bit strange to me.
Yes, the doctors are trying to scare us and they take a sick delight in doing so by making up big, scary words. The doctors want to make us tremble with fear. It couldn’t possibly be the severe, debilitating pain interfering with quality of life that is so upsetting.
I must truly be the outlier, the different one, because in my experience, it was not the word itself but the meaning behind the word that scared the everliving shit out of me. A rose by any other name would have smelled just as sweet.
My regular gynecologist was reluctant to give the diagnosis of vulvodynia, because for one thing it’s not exactly easy to treat. She was visibly frustrated when she called me into her office to give the tentative diagnosis & refer me to the specialist. For another thing, she knew she was not a specialist in vulvovaginal pain. While she could provide pap smears and medication for acute infections, and could deliver babies, she knew she was unprepared to guide me along the road to treatment. For another thing, she knew that road I was about to take was going to be long & hard and fraught with “Here be dragons!”
There was no love, no delight in her eyes when she pronounced the word.
But what is vulvodynia, anyway? What was going on in my vulva? A brief description:
The condition typically presents with stinging, burning and/or itching sensations that can really zap a woman’s sense of wellbeing.
I’m not going to argue with the last statement, that vulvodynia can interfere with how patients feel about themselves, since, there’s no denying that I
certainly got knocked for a loop. However, Appleton’s description does not state that the pain takes place in the vulva; it just describes what it feels like, and the title of the page is awkward, shy.
However I’m not clear on whether Appleton is talking about true vulvodynia or vulvar vestibulitis. To be fair though, I, too, have a tendency to use the two terms interchangeably, but I at least try to use “Vulvodynia” as a broader blanket term to include pain besides vulvar vestibulitis. Perhaps that’s what’s going on here, but the difference could be important: If Appleton found treatment for vestibulitis, would it also work on general vulvodynia? Or vice versa? or
At any rate, it’s not surprising that women with sensations like Burning, stinging, and/or itching in their genitals might want to seek treatment:
Is there a cure or treatment? Mainstream medicine has been slow to come up with a definitive answer.
Indeed, although the medical community has been vaguely aware of vulvodynia since about the 1800s (and possibly even longer,) it’s really only within the last 20 or 30 years that serious research has been done. And since it is still not fully understood what causes vulvodynia & related conditions in the first place, there are various treatments in place. What works for one patient, may not work for another. Furthermore, some patients may not be comfortable with certain treatments, so it’s worthwhile to have a lot of options open.
So what treatments are patients trying? Appleton touches upon an article published by Dr. Barbara Reed in 2006. The article, Vulvodynia: Diagnosis and Management, is aptly named – it gives an overview of what vulvodynia is, how to determine if a patient may have it, and what treatment options are available.
Luckily, you and I can read the article in question too, for free.
Back to the question of whether or not there is any cure or treatment available. Researcher Reed’s outlook is generally positive:
Most women experience substantial improvement when one or more treatments are used.
And the article eventually presents a Table 3, a brief overview of what treatments patients can investigate. However, Appleton isn’t impressed with way the article “meanders through discussions of nerve sensitivity, cognitive behavior therapy and pelvic floor muscles.” Instead, she seizes upon this opportunity to point out what “tidbits” her research in nutrition has in common with Reed and other researchers’ findings in vulvodynia:
inflammation, immune system, allergies and diet.
If you will look closer at Reed’s article though, it states,
There is controversy about whether changes exist in the inflammatory infiltrate in vulvar tissue of women with vulvodynia. Some studies29-31 found an increase in inflammatory cells or mast cells, whereas others32,33 found that inflammatory cell infiltrates were similar in patients with vulvodynia and control patients… The cause of this increased neuronal density and its role in vulvodynia remain unclear.
So even the medical doctors don’t know why some patients experience inflammation in their vulvar tissues and others don’t, and even the medical doctors don’t know why that inflammation, when present, occurs.
As to the immune system response, it may be worth noting here that some patients with vulvodynia deal with overlapping chronic conditions, which may be related to the immune system functioning – enough patients deal with possibly related chronic conditions that the NVA participates in the Overlapping Conditions Alliance. Reed’s article states that some research found “minor immunologic changes” in vulvodynia patients, which “could result in a decreased ability to downregulate the inflammatory response, which in turn may be associated with neuropathic changes.”
The only place in Reed’s article where allergies is mentioned at all is in a diagnostic table as a differential diagnosis. The possibility of allergens as a cause for vulvodynia is not explored in detail in this article.
Still, there are three key words mentioned in Reed’s work that fit in comfortably with Appleton’s own research in diet & nutrition. Appleton notes that a diagnosis of vulvodynia requires there be no active yeast infection found in vaginal cultures (No word on the fact that the diagnosis also requires that there be no active bacterial infections.) So she asks (as I’m sure many patients themselves ask, hoping against hope for an easier answer,) whether it’s possible that doctors miss yeast infections during their cultures:
Can the yeast infection change form and continue to cause pain in women after the topical ointment has killed off the infection, which typically is found on the surface?
The answer is yes, according to Majorie Crandall. This actually looks like a pretty interesting piece of research. Crandall’s work suggests that “Any red, burning, irritated tissue for which there is no identifiable cause should be considered a candidate for the diagnosis of the red form of candidiasis,” including the redness that is sometimes found with vulvar vestibulitis. For vulvodynia patients, that means it might be worth looking into treating a yeast infection that’s hiding deeper in the skin.
There’s a couple of issues I have with Crandall’s article though. For one thing, not all patients with vulvodynia experience redness in their vulvas. I did, and the “-itis” suffix on “Vestibulitis” is there to indicate “inflammation.” But the medical community is moving towards a more inclusive term, “Vestibulodynia,” because redness is not always found in vulvodynia & vestibulitis patients. Crandall’s seriousness table says “Vulvodynia = vulvar vestibulitis,” whatever that means since although they’re related, they’re not technically the same thing… and she has vulvodynia & vestibulitis classified under the “Annoying = Benign = Superficial candidiasis” category. Well maybe this is just me speaking out of anger, but I for one don’t consider vulvodynia & vestibulitis to be “Annoying” or “benign.” Maybe she just means it’s not serious in the sense that, it’s not a terminal illness.
Crandall doesn’t cite her own research on this page, which annoys me to no end for a couple of reasons. One, because I’m genuinely interested in knowing which “controlled clinical studies have provided evidence for the candidiasis hypersensitivity syndrome,” and which ones show that SSRIs & cough syrup may have antifungal properties. Two, Crandall dismisses vulvodynia treatments including surgery, biofeedback, the low oxlate diet, and estrogen gel, as being “Barbaric,” “Unproven,” “Invalid,” or as causing more yeast infections. The thing is, while I’ve heard of some doctors who will aggressively treat yeast long-term just in case it IS a problem for vulvodynia patients, I’ve not seen many controlled studies on that myself – if I have run across such studies, they’re few & far enough between so that I can’t remember how they turned out.
Back to Appleton’s article. She talks about what it means to the vulvodynia patient if a hard-to-reach yeast infection is causing vulvodynia. How did the yeast get there in the first place?
The answer to that question, according to Appleton, is Sugar.
And indeed, sugar is a possible cause for yeast infections – along with injury, hormones, antibiotics, condoms, clothing, a compromised immune system, etc. etc. etc… it goes on.
Appleton goes on to cite some research about yeast infections dating from the 1970s through the early 1990s. I guess the medical research community is done studying yeast since there’s no recent work included. According to her, ultimately, sugar is the root cause for yeast infections and by extension, vulvodynia. Her article concludes, “Sugar causes everything and vulvodynia is but one more example.” (emphasis mine.) Appleton doesn’t state something like, “Sugar is a possible contributor to vulvodynia,” she puts it forth as a direct cause-effect relationship.
If that’s the real reason for vulvodynia, then the way to prevent or stop vulvodynia in its tracks is clear – eliminate sugar from your diet, thus starving the yeast out. And, maybe try the low-oxlate diet (even though one of Crandall’s articles linked to above says it may not work anyway.) It is not clear to me whether a sugar-elimination diet will eliminate the rare but still infectious strains of yeast besides Candida albicans, as that is the only species Appleton explicitly mentions in her article.
Of course, eliminating sugar isn’t an easy or comfortable thing for most people to do. Luckily, Dr. Nancy Appleton is here to help you by providing sugar elimination diet-related materials, for a nominal price.
…Does this look just a a conflict of interest to anybody else? Am I the only person here who finds it just a bit suspicious that Appleton, the author of not one but two books about sugar elimination diets and a seller of various other goodies, puts forth sugar as THE cause for vulvodynia?
Is anybody else just a little bit disturbed that someone who is not a medical doctor (M.D,) a gynecologist, a vulvovaginal specialist, or a vulvodynia patient advocate, claims to have found THE cause, and, coincidentally, a way to stop it from happening?
Maybe it’s just me, but when I see things like “Sweet suicide,” and “Sugar kills,” I can’t help but think that maybe there’s a little bit of fear mongering going on. Appleton’s article states, “An allergy is merely a precursor response that can later develop into whatever disease comes next,” meaning, that if you keep eating that sugar, you will eventually develop a debilitating disease. You may not have vulvodynia yet, but you will. Keep on eating all that junk food and you’ll be digging yourself an early grave.
What do you think? Is it just me? Am I being paranoid? I don’t know, I’ve been wrong before. But dietary changes didn’t seem to do much for me when I was dealing with the worst of the vestitibulitis, and it doesn’t seem to have an influence on the vaginismus. I mean, I cut caffeine out, sure, and I maintain a little bit of a high-fiber diet post-vestibulectomy. I added probiotics to my diet as well, something that appears nowhere in Appleton’s article.
But even I was inclined to drastically change my diet,
I think I should probably talk to my doctors first. Doctors who are more familiar with vulvodynia and my own physiology. And then, even if they say, “Oh yes you should definitely cut all sugar & seek help doing so since it’s so hard,” I think I would avoid Appleton’s plans.
Becasue I’m not fond of being marketed to in this way.
It’s a bad way of furthering research on vulvodynia, because any valid point Appleton may have about diet, allergies, and yeast, is overshadowed by the fact that she positions herself to earn money off of vulnerable patients desperate for a cure. I suppose that’s true of almost any medical research, and it’s actually a giant bone of contention for some doctors researching female sexual dysfunction in general. That’s one of Dr. Leonore Teifer’s concerns – that pharmecutical companies sponsoring research into sexual dysfunction stand to earn big money if a treatment or cure is found. The thing is so much treatments available for vulvodynia now, use what is already available – there is no magic pill for vulvodynia. There is no single cure. I want there to be one. I want there to be a prevention.
But not like this! Not if it means using scare tactics and telling patients that they are literally killing themselves a little bit every day, and the only way out is your way, which by the way you can participate in if you just pay a small fee…
On the flip side, Appleton’s marketing also targets women who don’t have vulvodynia, by holding it over their heads as a threat if they keep eating the way they do.
Another problem I have with Appleton’s page is that, nowhere on it does she mention the existence of the NVA & its efforts to further controlled research studies on vulvodynia. If you want to explore sugar as a possible causative element in the development of vulvodynia, why not approach the NVA about it? Why not see if there’s interest in starting a study? Why not make a donation? As it is, spending money on Appleton’s diet program diverts needed funds away from bona fide research efforts.
The thing is, I know this is just but one example of websites and blogs targeting and schilling questionable goods & services to vulvodynia patients,and certainly it is just one of many ways in which chronic conditions in general are subject exploitation. Appleton doesn’t outright claim she has found the cure for vulvodynia, but this program implies that her research has found a direct cause-effect link, and that has been kept hidden from patients by the medical community. I’ve seen other websites hawking goods and treatments of dubious validity for various chronic ailments. I absolutely love a post up at ChronicHealing in which the blog writer, Jeanne, picks apart suspicious claims made by the Endometrosis Foundation of America.
I don’t have a problem with investigating hidden yeast infections as a cause for vulvodynia, I don’t have a problem with investigating a low-sugar or candida elimination diet. But if those are going to be listed as possibilities, the research needs to be done in repeatable & verifable conditions. It needs to be published in a peer-reviewed journal, and subject to scrutiny & improvements. And at the same time, we need to let patients make their own informed choices about treatment, and not scare them into going down one route, wallets open.
Post articles about vulvodynia
05/27/2009 at 7:31 pm | Posted in Uncategorized, vulvodynia | 3 CommentsTags: experts, female sexual dysfunction, health, journals, medicine, research, surgery, TMI, vulvar vestibulitis, vulvas, vulvodynia
Hey guys, you want to see a recent article on vulvodynia? It’s full text & it’s free!
A practical approach to vestibulitis & vulvodynia
Careful, it’s not work-safe (but then, I suppose few things about vaginas are…) It’s even got pictures.
I don’t want to copy & paste the entire article so instead, let’s have a bulleted point list. Chances are, if you’re reading this blog you may already be familiar with some of what is being rehashed here anyway.
But if you’re not familiar with this topic, then well here’s your chance.
Couple of noteworthy points –
Article breaks out V into 3 kinds: cyclical vaginal infections (recurrent yeast in particular.) Vestibulitis (pain with penetration) and essential Vulvodynia (more generalized pain.)
I still tend to use “Vulvodynia” as a blanket term which includes vestibulitis.
However, technically speaking we’re supposed to start moving away from the “-Itis” suffix in “Vulvar Vestibulitis,” since, that ending implies inflammation. Inflammation was present for me, but it’s not present for every patient. Instead some doctors are moving towards using the phrase “Vulvar Vestibulodynia.” I’m probably going to continue with the -itis though, since I’m more used to that phrase.
This article cites a 16% rate of some type chronic vulvar pain in female patients in Boston. That’s around the same numbers I’ve seen before. That’s not necessarily a 16% rate of diagnosed vulvodynia, just those reporting chronic pain.
I disagree with the headline that says “Medical treatment is ineffective” re: vestibulitis. It’s kind of a weird headline anyway since I always thought that the vestibulectomy was a medical treatment. The only thing I can think of is that the authors consider surgery to be a category of treatment unto itself, separate from “Medical.” Maybe the authors mean “Medical” as in, oral medications?
But then why not mention the oral tricyclic antidepressant approach for vestibulitis? It’s mentioned further down re: treatment of vulvodynia – maybe the authors of this article have concluded that tricyclics work better on vulvodynia rather than vulvar vestibulitis?
Also, the article mentions that steroids don’t usually play out too well as a topical treatment… but why didn’t it mention topical hormones? It’s mentioned as a treatment for older & post-menopausal women, but, I’m a young lady & I used topical estrogen gel for awhile.
I also disagree with this headline because ouch, what a kick in the teeth to women with vestibulitis who would very well benefit from some medical intervention. Surgery or bust just isn’t fair.
The authors note that vulvodynia is more likely to happen among older women, although in practice I’ve seen it among women the same age as I & younger. In practice I’ve also seen resolution take much longer than just a few months for vulvodynia. The authors sound pretty optimistic.
For some reason Physical Therapy is not mentioned as a treatment in this article at all. I find that to be a glaring omission. “Where’s the beef Biofeedback?!”
Dietary changes & avoiding irritants are likewise not mentioned. Alternative treatments like acupuncture & chiropractic is not mentioned.
Sex therapy is missing. Maaaybe this article isn’t really the best place to bring up sex therapy since, the article focuses on typical medical treatments. I don’t think that sex therapy be a good option for myself but the authors could have mentioned it as an option to expand a patient’s sexual horizions. Intercourse does not necessarily have to be the end goal of treatment, which is kind of implied with the patient used as an example at the beginning & end of the text.
The authors do not examine possible causes much.
Some of the sources cited in the footnotes are on the older side. I’m familiar with several studies though; I’ve printed out & read several of these. The Goetsch study in particular comes to mind. I’ve seen statistics in other subsequent studies hover around the same incidence rate numbers that Goetsch came up with so I guess the repeatability makes it a fairly strong research paper. Still, I’d prefer to see a stronger emphasis on more recent work.
So it’s not perfect, it’s missing some things, but it’s still an article on a website so maybe somebody with a medical degree will actually pay attention. Or even a layperson who never heard of such things before.
Maybe…
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