Tags: academia, communication, disability, experts, female sexual dysfunction, FSD, health, language, medicine, pain, psychology, sex, sexual dysfunction, sexual health, vulvar vestibulitis
No one knows what to do with sexual pain.
If you have experienced long term sexual and/or genital pain, you’ve probably seen multiple doctors about it. You may have started with a general practitioner, who referred you to a gynecologist or urologist, who referred you to a sex therapist, who referred you to a pain specialist. There may have even been a dermatologist or psychatrist in there somewhere. And you may have noticed that each of these professions have their own ideas (or lack thereof) about how to best handle the situation. When getting refered to yet another doctor, you’re getting clued into who your current caregiver thinks is likely to have the most knowledge about treatments. (Of course, this assumes you have the health insurance and cash to cover medical treatments.)
But having been through the doctor shuffle already, I have come to the conclusion that no one really knows what to do with sexual pain.
Part of the reason chronic pelvic pain patients get bounced around so much is that, behind the scenes, doctors themselves are still debating how best to handle sexual and genital pain. Are we dealing with a chronic pain syndrome akin to something like back or neck pain? Or are we dealing with something purely sexual? A gynecologist may feel inadequately prepared to deal with long-term genital pain that doesn’t resolve following standard operating procedures. But when the pain takes place mostly during, or most acutely, during sexual activity, a pain specialist may think the problem is purely sexual – and some pain specialists may feel uncomfortable addressing unwanted pain during sex. Sexual dysfunction as we in the US know it is a relatively new and highly controversial area of study. And it will take time for doctors, scientists and philosophers to sort out the defining characteristics and treatments of dysfunction – if indeed such standards can ever be decided. It is the nature of science and medicine to go through revisions and changes.
I just wish these doctors and professionals would make up their minds already about which one of them I’m supposed to go to for treatment.
One such behind-the-scenes debate about the appropriate way to address sexual pain took place in early 2005, when Dr. Yitzchak M. Binik, Ph.D. wrote in to the peer-reviewed journal, Archives of Sexual Behavior. You can view an abstract of Dr. Binik’s piece, Should dyspareunia be retained as a sexual dysfunction in DSM-V? A painful classification decision here. If you want to learn more, you can view the full text on Dr. Binik’s website. (I can’t determine if what we’re going to look at today is considered an editorial piece, a study or a research review.)
So who is this guy? Dr. Binik is the director of Sex & Couple Therapy Service up at McGill University Hospital in Canada. He was one of the contributors to the textbook, Female Sexual Pain Disorders, (wrote the foreword) and he has written many articles about dyspareunia. According to his website, he’s also been involved with research on painful sex – there are three grant-funded projects listed as of 2011. But wait, there’s more – his whole resume is up for perusal.
At the time of Dr. Binik’s submission to the Archives of Sexual Behavior, dyspareunia (painful sex – usually when professionals say it, they mean “Cis-heterosexual intercourse,”) was classified as one of the four female sexual dysfunctions then-recognized by the DSM-IV. (The DSM-IV is the Diagnostic and Statistical Manual of Mental Disorders – basically it establishes guidelines for recognizing and treating various mental illnesses and disabilities. Professionals that rely on the DSM include psychologists and medical doctors. As of today a fifth revision to the manual is pending.) The other three sexual dysfunctions recognized by the text are arousal, libido and orgasm problems. Until then, there was not much debate among professionals who deal with dyspareunia about how appropriate its classification as a sexual dysfunction is.
Dr. Binik set out to challenge the classification of dyspareunia, with the goal of shifting it out of the sexual dysfunctions and into the pain category of mental disorders in the DSM. Reclassification of dyspareunia as a pain disorder instead of a sexual dysfunction would not remove it from the DSM completely – it would just move the problem around and give it a different name, grouping dyspareunia with any other pain while recognizing non-sexual pain in the crotch – such as the pain of a gynecological exam or attempted tampon insertion.
In Binik’s discussion of the history behind the term, “Dyspareunia,” he makes it sound like sexual pain was pretty much just thrown in with the other dysfunctions for lack of any better ideas at the time. But painful sex presents some unique problems compared to the other three sexual dysfunctions – after all, sexual pain frequently bleeds out into non-sexual areas of life. He talks about the differences between pain during sex (an act) vs. arousal or desire dysfunctions (physiological reactions,) and how dyspareunia is a broad term – to Binik, its breadth is a weakness instead of a strength.
There are several sexual dysfunction issues that Binik didn’t explore, and these omissions mean something. He did not challenge or question the existence or appropriateness of the term “Dysfunction” for any other sexual problem. He excluded a discussion of vaginismus, though this may be because vaginismus isn’t technically a dyspaerunia issue in the current DSM for some reason. (I’m not yet 100% clear on what the reason is for vaginismus to sit on it’s own tier of dysfunction; I think the folks behind the DSM fixated on how it prevents vaginal insertion of objects as the main feature, instead of the pain associated with attempts at insertion. This distinction is likely to change with the DSM-V.)
As examples to bolster his reclassification argument, Binik focuses almost exclusively on vulvar vestibulitis (VVS) patients – so he’s talking about people like me. Binik did not talk about dyspaerunia and endometriosis, or dyspareunia and interstitial cystitis, or dyspareunia and cancer. For this discussion, dyspareunia and VVS are used almost interchangeably… even though VVS is not the only cause and kind of painful sex.
I summarize Binik’s main agruments to move dyspareunia out of the sexual dysfuctions and into pain as:
1. Dyspareunia is similar to any other pain in self reports. Genital pain is similar to other pain conditions when visualized using brain scans (pages 14, 16.)
2. There’s more research on pain. “By contrast, there is a relatively large literature onhow pain is represented in the brain (Casey & Bushnell,2000; Talbot et al., 1991).” (page 16.) So there’s more material to work with.
3. Treatment plans for sexual dysfunction don’t usually include pain management. If professionals take a pain perspective of dyspareunia, it opens up more complementary treatment options. That means potentially better outcomes for patients (page 18.)
(Unfortunately, Dr. Binik doesn’t address this – it also means more anxiety about seeking treatment in the first place, since pain management can include oral medications – and certain feminist anti-FSD activists in particular and bootstrapists in general dedicate extensive resources to opposing medication for sexual and health problems. Just think of all those sensationalist news stories about celebrities becoming addicted to pain pills.)
4. Socially, pain is a more dignified, less controversial subject than sex – “Finally, as a seeker of research funding, I have noted that there have been several recent new governmental funding initiatives for pain related to dyspareunia (see National Institute of ChildHealth and Development, 2000). As far as I know, this is not being matched in the sexuality area where funding is constantly under attack” (page 19.) This is an unfortunate reflection of how sexual issues are downplayed and sneered at by the public. It’s just easier to get funding, research and respect if you’re exploring pain than it is if you’re exploring sex.
Judging from the passionate responses included with the same issue of Archives of Sexual Behavior, Binik’s article was quite controversial at the time. There were at least 21 responses, plus however many other e-mails and memos were written up and sent around but didn’t get published. Eventually Binik wrote a follow-up statement in response to professional criticism, which I’d like to look at with you later.
My biggest schtick with Binik’s article and the responses is: I honestly don’t get why this has to be an either/or question.
I’m saying this as a patient: This isn’t a simple either-or issue. Dyspareunia isn’t something that fits neatly into a single box. Try to stick it in the sex box, and the pain stuff will still leak out into every day life. Try to place it exclusively in the pain box, and sexual problems will jump in. You can have pain AND another sexual dysfunction, like problems with arousal or orgasm.
If you ask me, pain in the genitals should be recognized as both a pain and sexual problem. For some patients, it may very well fit neatly into only one category. But whatever professional field is assigned as having the final say on the best way to treat dyspareunia – you need to be prepared to go outside of your own comfort zone, in order to bring me the comfort I need.
Unfortunately my perspective as a patient isn’t given much value. Just the location of publication presents a problem – the insular nature of being part of a peer-reviewed journal itself acts like a firewall to keep out non-professionals and non-academics. Which means ordinary folks probably don’t even get a chance to find out when debates like this happen, and we probably won’t be solicited for feedback. These debates excluded most women with FSD from participating.
It’s a bummer, too, since I got more to say about this article, which I’ll spell out here instead.
A major weakness of Binik’s argument and one that Binik had to address in a later, separate response, is that he did not really consider the sexual part of sexual pain.
Like it or not, pain in the genitals takes on a different meaning than pain in the arm or neck. And no it’s not fair, I think it sucks that it is socially unacceptable to say, “My vulva/penis/clitoris hurts today.” Not that its easy to talk about chronic pain to begin with though! Non-sexual, non-genital pain still gets heaps of stigma and able-bodied folks going, “Deal with it.” But right now, in the US at least, genitals are all tied up with issues of gender, identity and performance. So looking at dyspareunia exclusively as a pain problem won’t address the ways in which pain can impact sexuality. Even if the pain resolves satisfactorily, dyspareunia patients may still have to deal with long-term insecurity and body memories. If other dysfunctions like difficulty or loss of orgasm have gotten tied in with the pain, then those non-painful problems may not resolve at the same time as pain. To ignore the sexual component of genital pain, to the extent that it is present, is inadequate.
ON THE OTHER HAND, for some folks, skipping the sex part and addressing the pain is exactly what’s needed. This was actually more the case for me – what I needed the most when I went through the most intense period of genital pain and treatment wasn’t sex therapy or a better understanding of social construction. Gender roles and patriarchy, as much as they do hinder me in many other ways, did not reach inside of my body and cause my cells to rebel. What I needed most was something to address the physical pain and discomfort.
That urgent need is lessened now, but it’s not completely gone and it will probably never go away completely. So I remain open to medicine in my sex life now and in the future.
Now, of all the people who wrote in, who do you think would have been the most likely to agree that dyspareunia should not be classified as a sexual dysfunction? I’ll give you a hint: After all, sexual dysfunction is a controversial term – part of the resistance against it stems from concern that the medical industry will throw around the term to convince able-bodied women that they have physical problems, thus increasing sales of medications and devices to address it. Who’s to say whether a libido is low in the first place, and how exactly are we supposed to measure such a subjective experience?
So I was shocked, absolutely shocked, to see Dr. Leonore Tiefer, Ph.D., organizer behind The New View Campaign, sex therapist, educator, author and editor, write a negative response to Dr. Binik’s proposition. You may remember Dr. Tiefer from such posts as a 5-part series on Sex is not a Natural Act and A Review of A New View of Women’s Sexuality. You may also recognize her name from prolific writing on feminism, social construction and female sexual dysfunction. Dr. Tiefer is a critic of female sexual dysfunction, particularly the way it is handled by organizers of the DSM and its end-users (the end users being doctors and other professionals.)
So if, in other cases, Dr. Tiefer supports the view that female sexual dysfunction is a myth manufactured by medicine (even if she herself is careful to avoid using that exact phrasing,) then what’s she doing getting involved with the reality of dyspareunia?
To be continued…
Tags: academia, books, disability, experts, female sexual dysfunction, humor, news, NVA, picture post, sex, sex education, sex is not a natural act, sexual dysfunction, TMI, vulvar vestibulitis, vulvodynia, what
In the same spirit as the original Shorties, I bring you: A series of posts which were each too small to constitute blog entries on their own. Divided we are weak, but together, we are strong!
The National Vulvodynia Association’s newsletter for 2010 is posted on their website, here. It includes updates on research and funding, and profiles of researchers who have received NVA-related grants. There are also profiles of medical professionals working towards a more comprehensive understanding of vulvodynia. There’s also updates on educational materials and programs provided by the NVA.
There’s a couple of reasons I like to post book reviews on this blog. I may post product (vibrator, dilator etc.) reviews in the future; I haven’t decided yet. Again, a reminder: Any reviews I posted here so far, I had to pay for the product in question & I haven’t gotten any compensation for my services.
It’s a blog about sexual dysfunction, especially that greatest bone of consternation, female sexual dysfunction. One of the common themes I read in feminist analysis of FSD is that a lot of it is actually sexual insecurity which stems from ignorance and lack of education. The idea goes something like, men & women are socialized differently and grow up with different expectations & pressures when it comes to sexual behavior. (In other words, differences in sexual behavior between men & women aren’t necessarily inborn.) Women are discouraged from learning about sex & pleasure. Combine this with shitty sex education and you have a pretty good chance of not understanding the influence of gender roles and how your own body works. This in turn is misinterpreted by the individual as “There must be something wrong with me” when experiencing a normal, understandable reaction to sexual stimulation. And the cure for this is better sex education instead of medication. Go read a goddamn book or something!
Improved sex education is great, so that’s one reason to post reviews of sexual guides and products. So every one in awhile you’ll find such a review here – it’s my way of saying, “Hey, here’s something that’s good and worth your time,” or, “Hey, here’s an overrated product that isn’t worth the packaging it came in. Save your money.” Or I’ll post something more nuanced – ”This is good, this is bad, and this part I don’t understand at all.”
However there’s another reason I post the reviews here…
Sometimes all the sex education in the world cannot fix a sexual problem.
Because it doesn’t all come from sexual ignorance.
Many of the sexual guides I’ve read, some of which come highly recommended, do not do a good job of addressing my problem in particular – pain. Maybe it’s because they’re not medical advice books so they can’t recommend treatments. Liability issues, maybe.
I’m doing what I’ve been told to do. I’m getting better sex education. I read the blogs. I buy the sex toys from the feminist sex shops. I have explored my sexual fantasies and will continue to do so. I masturbate to orgasm. I am in love with a supportive partner (the feeling, I understand, is mutual.)
The lady with sexual dysfunction is reading a goddamn book or something.
So why do I still experience dyspareunia?
Why do I still have vaginismus?
Why does my vagina still take so long to recover from vaginitis?
Why is medical intervention the treatment that best addressed the sexual and chronic pain?
Hey wait a second, this isn’t working. I still want to have some penis-in-vagina sex over here and that’s still like, really hard to do. Maybe I’m just not reading books and trying to learn hard enough.
The sex education helps – it’s definitely worth something. But it’s not comprehensive enough for me.
Now we could say here that I am the special snowflake exception to the general rule that FSD is a fake invention designed by Big Pharma and evil doctors; Dr. Leonore Tiefer, organizer of the New View Campaign, said as much when she wrote, “Dyspareunia is the only valid sexual dysfunction and certainly the only important one,” in response to the suggestion that dyspareunia might be better considered a pain condition rather than a sexual problem.
So hypothetically I suppose I could say, “Fuck you all; I got mine.”
Hypothetically. I have no desire to actually do that and in fact I feel dirty for having spelled such a phrase out in text. Excuse me while I swish some mouthwash and/or wash my hands. Is that what I’m supposed to say? Is that the way I’m supposed to feel? Is this the signal that, as someone with dyspareunia, I’m supposed to shut my pie hole when I see folks with other dysfunctions belittled for it?
I maintain that elevating one or some forms of sexual dysfunction as more real than others creates and crystalizes an artificial hierarchy. And it throws folks with sexual dysfunctions other than or in addition to pain under the bus.
And if, for me, all the sex education in the world fell short of actual medical help from professionals, then why should I believe that it would be any different for all of my friends who have sexual dysfunctions that are not painful?
Not that sex education has been completely useless; far from it. I have taken advantage of the information I found useful. (I also tripped over the parts that were counter-productive.) But to deny medical options to women with sexual dysfunction is to remove an important potential treatment, which for some folks may very well be necessary to find sexual satisfaction. And I find it highly disturbing when such options are removed through means of threats & intimidation, shaming, or ableist comments.
Speaking of dyspaerunia being “The only valid sexual dysfunction and certainly the only important one,” I made this Privelege Denying Dudette meme just for you:
[Picture: Background: 6 piece pie style color split with pink and blue alternating. Foreground: White girl wearing a green t-shirt, featuring an African-American Sesame Street muppet with nine different hairstyles, subtitled, “I Love My Hair.” Has a smug, arrogant facial expression and plays with her long, brown hair. Top text: “ [SEXUAL DYSFUNCTION ISN'T REAL, YOU DON'T NEED MEDICAL INTERVENTION IN YOUR SEX LIFE] ” Bottom text: “ [WAIT, YOU HAVE DYSPAREUNIA? YOU BETTER GO SEE A DOCTOR.] ”]
What? Wait, what’s it going to be, do I trust my doctors or not? Do they know enough about sex to help me or is it an exercise in futilty to even bring up a sex problem? Am I allowed to go to one of the heavily-marketed sexual dysfunction clinics Dr. Tiefer mentioned in Sex is Not a Natural Act when my regular gynecologist gets stumped and refers me to such a clinic? If I take a prescription for sexual pain, am I just feeding the Big Bad Phama Beast and looking for an easy, quick fix? If I get treatment for dyspareunia, does that count as medicalizing sexuality?
I recently came to a revolutinary conclusion. If your definition of sex positive does not include sexual dysfunction, then your definition isn’t positive enough.
I want to go out of my way to explicitly include sexual dysfunction in sex-positive discussions. Because ignoring it, outright denying its existence, or claiming that looking at sexual dysfunction = focusing on the negative, will not make it go away. Insisting that sexual dysfunction is a lie erases people who actually have sexual dysfunction. As a result, people with sexual dysfunction are excluded from sex-positivity – and I hate that. There is push-back against excluding people with a history of STIs from the sex-positive community by means of negative, stigmatizing language – why not push back for people with dysfunction?
You know what? I have sexual dysfunction. I exist. This is a long- term thing for me that I do not foresee changing any time soon. It will not go away just because you are uncomfortable with dysfunction (and, by extension, disability. These two phobias tend to go tovether, possibly because dysfunction may be viewed as a sub-type of disability.)
Yet even with the dysfunction, somehow, in spite of everything, I am sex-positive. I have made peace with it – or, at the very least, I have made a truce with myself until I can figure something better out.
Insisting that sexual dysfunction isn’t real or that medical options are unwarranted is just going to make it harder to get the care that I and my friends need. It’s true that most people will never experience sexual dysfunction, and so will not require medical options to address it. Nonetheless, inevitably, some people are going to develop sexual dysfunction. Isn’t there a way we can focus on getting support to such folk, instead of trying to sweep ‘em under the rug?
Sexual dysfunction and sex-positivity do not need to be mutually exclusive.
Sometimes, I worry a little bit about my reliance on a vibrator for orgasm. I think that, with enough practice, I probably could masturbate to orgasm using only my (or my partner’s) hands. But until then, I orgasm easily enough with a battery-powered vibrator.
I’m not worried about spending money on vibrators and thus supporting a capitalist system. I’m not worried about using my vibrators during sexual activity with my partner. I’m not worried that he’ll feel inadequate compared to my vibrator. I’m not worried about becoming addicted to masturbation. I’m not worried that I’m supporting the tyranny of orgasm.
The real reason I sometimes worry about using my vibrator is…
…I have this paranoid fear that some day space aliens or a freak accident or a Hollywood movie-esque disaster will unleash an electromagnetic pulse over the USA (home) and all elecronics will lose functionality.
Including my vibrators.
And then I’ll have to find a techno wizard to SteamPunk some kind of hand-cranked or steam-powered vibe for me. Possbily incorporating or inspired by one of the old-time antiques like those found in the Museum of Sex. And it’s just going to be really awkward and frustrating and I’ll probably have a lot of other important things to worry about post-EMP.
Obviously I don’t really know how EMPs work and I don’t really care. Everything I learned about them, I learned from movies.
I think about this with about the same frequency that I think about the Zombie Apocalypse as a real thing. Which is to say, not very often except for maybe after watching a movie about a zombie apocalypse or a post-apocalyptic setting.
Tags: disability, female sexual dysfunction, Feminism, FSD, guest post, health, intersectionality, media, medicine, pain, sex, sex education, sexual health, vulvar vestibulitis, vulvas, vulvodynia, women of color
This was cross-posted to Womanist Musings.
For the purposes of this post today, I will be focusing on vulvodynia; however keep in mind that there are other causes of chronic pelvic and sexual pain; likewise there are serious sexual problems besides pain which also deserve attention.
Vulvodynia is a syndrome, a collection of symptoms, centered around chronic vulvar pain, lasting longer than 3 to 6 months. Pain (commonly described as burning, stinging, stabbing, rawness and/or irritation,) may occur in the vulvar vestibule, mons, urethral opening, labia, clitoris, or elsewhere in the vulvar area. Not all instances of vulvar pain are vulvodynia, and for some women vulvar pain may resolve on its own.
Vulvodynia does not have one universal cause; some possible causes include injury, sensitivity to vulvar microorganisms (like yeast,) hormonal changes, muscular problems, etc., though for some folks the cause will remain unknown. For some women, vulvar pain is caused by pudendal neuralgia or pudendal nerve entrapment. Everyone is different, so some women experience pain all the time without provocation while others experience pain only when attempting to insert something vaginally. Likewise, for some women, it is still possible to enjoy sexual activity even with vulvodynia, while for others sex will become too painful to engage in. There are a number of treatments available for vulvodynia, but no single cure, so women with vulvar pain may have to burn through multiple doctors and treatments before finding the right one.
Who develops vulvar pain? I have seen several sources which present similar estimates as to how many women experience vulvar pain at some point during their life – at least, in the United States. According to one 1991 study, about 15% of 210 patients attending a gynecology clinic met the criteria for a diagnosis of vulvar vestibulitis. According to a 2002 release from the National Institutes of Health, about 16% of over 3,000 survey respondents reported chronic vulvar pain. (More on this figure in a bit.) The raw numbers seem to vary more; this same NIH release estimates that up to 14 million US women will experience vulvodynia at some point during their lives, whereas media coverage such as the Dr. Oz show estimate that there’s about 6 million US women currently living with vulvodynia. One thing all these studies agree on is that chronic vulvar pain, while not experienced by a majority of women, certainly isn’t rare either.
However, for a long time, I thought that women of color developed vulvar pain like vulvodynia less frequently than white women. I believed this, because I saw such statements in books, I saw it in studies, I saw it in the media and I went along with it. I realize now that I was completely and totally wrong. Vulvar and sexual pain does NOT just effect white women and in fact the rates of pelvic pain in white and nonwhite women is similar. But how many people still don’t know about vulvar pain in women of color? How many doctors and gynecologists are, like I was, under the impression that their nonwhite patients rarely experience nameable vulvar pain conditions which have treatment options available?
Here’s why I was wrong and why you too should care about women of color and chronic pelvic pain:
One of the first resources I picked up when I started looking for treatments was Dr. Howard Glazer’s The Vulvodynia Survival Guide, which is all about vulvodynia. Here’s what Glazer’s book said about vulvar pain and women of color…
“For unknown reasons, African-American women as a group are the least likely to report vulvar dysesthesia, or any other type of vulvodynia” (Glazer, 19). And “Again, Caucasian women have vestibultis [a specific, localized type of vulvar pain -K] more than any other racial group (Marinoff and Turner, 1992).” (Glazer, 23).
It goes on. In the late 1990s, early 2000s, Glazer organized a survey of women with vulvodynia though his website, vulvodynia.com, and in his book he reported that 90% of the survey respondents were Caucasian; “Less than 1 percent were of African origin” (33.) Additionally, it’s worth noting here that according to this same survey, participants’ “Socioeconomic status was higher than average; 62% reported incomes greater than $50,000″ (33,) and the majority also held “professional, managerial occupations,” and “59% had completed college” (33.) Glazer cautions, “The higher levels of socioeconomic, education, and occupation status is consistent with previous studies. Why? Unfortunately, it’s probably because educated women with access to money for medical care are the most likely to pursue the best, most sophisticated medical treatments (or at least to use the Internet” (33.)
But who is also the most likely group to be in the higher socioeconomic class and have a high level of education, and be in a better financial position to use technology and seek medical care? White people, in the US. Because of this, the design of Glazer’s study itself most likely skewed the results to exclude women of color. However, he went on to state,
Caucasian women reported more vulvar pain than any other ethnic group. African-American wome rarely report these conditions. Researchers aren’t sure why this is true, though it has been commonly observed by many of our colleagues in the International Society for the Study of Vulvovaginal Disease, who practice and teach in various medical settings where women of various races and incomes are seen. Other dark-skinned ethnic groups, such as Indians, do report chronic vulvar pain syndromes (33).
Hmmm, Glazer sure spent a lot of time driving home his point that black women don’t report vulvar pain frequently and that white women do.
But wait, there’s more. The results of an oft-cited but highly controversial, hotly contested study of sexual dysfunction in the US, Sexual Dysfunction in the United States, also stated that black and hispanic women were less likely to report dyspareunia,
The association between race and ethnicity and sexual problems is more variable. Black women tend to have higher rates of low sexual desire and experience less pleasure compared with white women, who are more likely to have sexual pain than black women. Hispanic women, in contrast, consistently report lower rates of sexual problems. (Laumann et al, online).
Additionally, media coverage of vulvar pain frequently reinforces the idea that it’s mostly white women who experience vulvar pain. Stock photos and illustrations that accompany books and articles about vulvar and sexual pain overwhelmingly feature white women. (See for examples, here, here and here – I could easily go on!) The erasure of women of color with pelvic pain and dyspareunia happens on television too, with a few exceptions; for example in 2008 the television show Oprah explicitly reached out to women of color in an e-mail requesting participants willing to talk about vulvar pain. Alas, to this day, although filming has been completed, that episode has not aired on tv. Another exception took place in 2010 on the Dr. Oz program, which ran a segment on vulvodynia. The original 8-minute segment included a guest woman of color who briefly commented on life with the pain condition (unfortunately the second half of this segment has been excised from the online video.)
However, the prevalence of vulvar pain among women of color may have been understated. The study which the NIH release above references is, A population-based assessment of chronic unexplained vulvar pain: have we underestimated the prevalence of vulvodynia? The abstract contains this critical line: “Contrary to earlier clinical assessments, white and African American women reported similar lifetime prevalences. However, Hispanic women were 80% more likely to experience chronic vulvar pain than were white and African American women” (Harlow and Stewart). Harlow & Stewart’s survey is no fluke; the WebMD article Vulvar Pain isn’t so Rare refers to a University of Michigan study published in the 2004 Journal of Lower Genital Tract Disease, “Although previous reports show the condition is rare among black women, the responses indicated that this is not the case. Black women had similar rates of vulvar pain as women of other races.” (Reed, online).
And as for Dr. Glazer’s claim that women of African descent rarely report pain outside of US settings? Even that has been challenged! In 2005, a study in the Journal of Reproductive Medicine revealed that 22.8% of women attending a general medical clinic in Ghana reported vulvar pain, which was linked to sexual dissatisfaction.
I am certain that effect of emphasizing white women’s reported rates of vulvar pain over that of women of color is silencing to this day. So what’s being done to address this revision in what caregivers should know about vulvodynia? The NVA’s fact sheet on vulvodynia now reflects that nonwhite women are just as likely as white women to develop vulvodynia. The language explicitly shows a change of perspective, from vulvodynia being thought of as primarily a Caucasian women’s issue to much broader. An NVA newsletter, Faces of Vulvodynia, included identifiable women of color like Karen, Yamalis, Amanda, Michele and Emily, who are willing to be interviewed by the media.
Unfortunately vulvodynia remains difficult to diagnose and it doesn’t help that some doctors remain ignorant of its very existence. Even doctors who do know about vulvar pain conditions may not be up do date with all the research. And doctors who are well-trained to address chronic pelvic and genital pain may be too far out of reach for many patients, both in terms of money and geographical distance. Genital and sexual pain received some media attention in 2010 but it still remains very much a taboo subject, and it is the butt of crude jokes surprisingly often. Society, guided by the long tendrils of patriarchy, pushes women to learn how to please men sexually, and so there is also pressure to perform sexual activity – even if it hurts. It shouldn’t have to be that way. And the quality of sex education is highly variable – I recall my own sex education lacked any mention of pain other than what happens when the hymen is broken.
If you or someone you love is experiencing chronic vulvar and/or sexual pain, some resources available online include the NVA in the US or the ISSVD internationally. A short list of some available treatments is available from the Mayo Clinic’s site.
Tags: blogging, health, interstitial cystitis, media, news, pain, sex, sexual health, television, vaginismus, vulvar vestibulitis, vulvodynia
Last night, December 6, 2010, at 10pm EST, MTV aired the season premiere of the television show, True Life. The episode was titled, “I Can’t Have Sex.” To produce this program, the show crew followed three women around over the course of several months and presented the impact of chronic pelvic pain conditions on their sex lives.
I watched the episode on television and I took notes. There’s a lot of things going on with and around this episode!
First, in case you missed it, MTV.com has the full episode available for viewing, now! This is what you’re looking for! I do not know if it will remain online indefinitely or if it will be removed in the future, but if you missed the episode here is a chance to catch up to it. It’s 42 minutes long. No subtitles available on the online version. Here is a brief summary with a link to the video. MTV has posted this follow up feature: True Life Check-ins. The follow-up article contains links to helpful resources.
Full disclosure: I sort of “Know” two of the women who were featured in this episode, because Tamra and Tali both maintain blogs. I do not know if Tess maintains a blog. Tamra’s blog is Living with Vulvar Vestibulitis. Tali’s blog is The Rambling’s of an IC Patient. I have not met anyone in person (that I know of) who was involved in filming this episode. But still, I feel a little weird posting about the episode at all, since I can apply a name, a face and a blog archive to two of the women who were on TV. It’s also weird because I have some of the conditions which were examined on the show.
Here is some of my notes taken during this episode, fleshed out a bit:
This is the first episode of MTV True Life that I have ever seen, so I went in not knowing what to expect. I rarely watch MTV and I tried to ignore the commercials that aired between segments. I was anxious about how the show would be edited and whether there would be any commentary provided by a third party. I’m still anxious about how the episode was received by a general audience. The sound to my TV was cutting out for a second at a time here & there so I was having a hard time hearing at some points.
The episode features three 20-something year old white women over the course of several months – Tess (self-diagnosed with vaginismus,) Tali (the episode focused on pelvic floor dysfunction but she has overlapping conditions which were not all given screen time,) and Tamra (diagnosed with vulvar vestibulitis and, later, orthopedic issues.) Chronic pelvic pain is an invisible condition. You would probably never guess from a first impression that these three women were dealing with chronic health problems unless they chose to disclose such information to you. Tamra, Tess and Tali are currently in, have previously been involved in, or are interested in heterosexual relationships. They are all unmarried and do not have children. We saw Tess and Tali’s boyfriends (at the time of filming) on this episode and MTV followed Tamra around on a date and to a social event. All three live in the USA. Except for the introduction to the episode, there was no narrator. That means that everything you heard, was spoken by the women or those close to them. Of course I’m sure MTV did some creative cutting and editing of the material collected. Filming wrapped up awhile ago, so there have been updates and changes in the womens’s lives in the interim between filming and the airdate.
Actual, proper terminology was used throughout the show. Chronic pelvic pain conditions were named, but some conditions that overlap were not mentioned at all (interstitial cystitis, for example, was not explored in this episode. This is a shame – interstitial cystitis is another misunderstood condition which would benefit from careful media coverage.) This episode focused on the impact of chronic pelvic pain on the women’s sex lives. And that means that while you could learn a little about life with chronic pelvic pain from this episode, for a clinical discussion and details on specific conditions and available treatments, you’ll need to look elsewhere.
We see some of the treatments that Tess, Tali and Tamra tried. A dilator kit on television, a TENS unit, a visit to a sex toy shop (Babeland) to pick out a comfortable lubricant. Psychological therapy, and pelvic floor and intra-vaginal physical therapy. (Several scenes where Tali received physical therapy with Isa Herrera looked familiar to me and Herrera talked about muscle tightness which was and remains a problem for me. It was just weird seeing someone else in the same position I had to spend so much time in.) Injections of anesthetic to the pelvic area and oral painkillers. Ice packs as needed. But I didn’t see anything about diet modification or alternative therapies like acupuncture.
Although sex and sexuality were the focus of this episode, MTV did show how chronic pain and anxiety can bleed out into other, non-sexual areas of life. Sometimes, like in Tamra’s case, pelvic and vulvovaginal pain is not limited to sexual activity. This was downplayed compared to the sexual aspects of pelvic pain, however. Because this is a blog about sexual dysfunction, I was okay with the sexual aspects of life with chronic pain for the episode – especially since I’ve been on this kick lately where I want to hear women talk about their own experiences with sexual problems. But keep in mind that if you do have chronic pelvic pain, there may be a lot of issues going on at the same time besides sexual problems. Or it may all be connected.
For example, there was one point in the episode where Tamra was speaking with a therapist. It was an emotional scene. But I thought that the therapist was misinterpreting Tamra’s concerns. Maybe it was just the way the editing was put together but during this scene, I thought that Tamra’s concerns included sex, yes… but they also went beyond relationships and sexual pleasure. However that that is what the therapist seemed more interested in. In this scene, I thought the therapist’s priorities did not match Tamra’s.
Tess was in a 5-month relationship with her boyfriend at the time filming began. She had not been able to have intercourse with him and was upfront with him. She picked out a dilator kit that came with an educational booklet and talked to a therapist to help address her anxiety.
Tali experienced the onset of her symptoms at age 17 and has seen 24 doctors. She was in a relationship with a young black man, Boom, at the time of filming (they have since broken up.) Remember, Tali’s blog is titled, “The Rambling’s of an IC patient” – yet this episode did not talk about IC at all.
Tamra was a student and the episode featured her giving a speech about vulvar vestibulitis in front of a whole bunch of people, as part of a women’s & gender studies class. Hmmm. Tamra had been in a sexually active relationship before developing what would be diagnosed as vulvar vestibulitis (her condition has since been re-examined.) She talked openly about how pain was making it hard for her to date and enter relationships – and pain made hard to enjoy other activities, like dance.
Viewers saw some of the relationship tension that Tali and Tess had, at least as far as their sexual problems went. If there were other problems in their relationships beyond sexual problems and anxiety, that was downplayed for this episode. Tess mentioned to her therapist though, that a previous boyfriend had said abusive comments to her. I thought it was interesting how Tess and her therapist involved Tess’s partner, Antonio, in her treatment for anxiety. Tali’s physical therapist also demonstrated some therapeutic techniques to Boom. (I wish I had had this opportunity to do the same with my partner; however we were in a LDR at the time of my physical therapy.)
Tess and Tali showe improvement with their favored treatments. For Tess and Tali the episode ended on an optimistic note. By the end of the episode, the two couples, Tess and her boyfriend, and Tali and Boom, were having sexual intercourse following the therapies they chose. But for Tamra, she was still dealing with a lot of pain in the end, and with a new diagnosis and the possibility of surgery. She had a labral hip tear and this may account for a lot of her pain. (She has been writing about this on her blog for some time now.)
Overall, I liked the episode. I thought it was good and I am shocked with the amount of time that these topics received. A whole hour-long television show, which works out to over 40 minutes?! Here I was scrabbling around for 2 to 7 minute clips! But there’s always room for improvement. This episode could have given much more airtime to Tali’s related conditions. Any airtime, really, for IC and lichens sclerosus. Just name them, even. In the future, a television program or other media outlet could do a whole episode or article about life with chronic pelvic pain and focus on areas besides sexual activity, because there is so much to life with pelvic pain. But there is that sexual aspect too… Was sexual pain sensationalized in this episode? Hmm… No, I don’t think so, I thought it was pretty frank. It was focused on sex, yes, but realistic to me. The editors certainly took the show in a certain direction. But it definitely wasn’t sensationalized like a recent segment on vulvodynia that aired on a local news channel. And pelvic and vulvovaginal pain was not treated like a huge joke (although Tess and her friends did laugh nervously when discussing vaginsimus.) There was no narrator for this episode and it did not feature an interview with say, a gynecologist, so no one was able to go into great detail about what causes pelvic pain and what treatments there are.
Future programs like this could also take steps to be less hetero-centric, and could actively reach out to more nonwhite women. (For example, years ago producers of the television show Oprah reached out to women of color for an episode about pelvic pain – an episode which has never aired.) And I’m surprised that the episode didn’t list some resources or URLs to information about chronic pelvic pain during the follow up with each of the interviewees. Resources such as the National Vulvodynia Association, The Interstitial Cystitis Association, and The Interstitial Cystitis Network.
So so far, in 2010, there have been a few depictions of vulvovaginal, sexual and pelvic pain, and each of these depictions have been different. There have been strengths and weaknesses with almost all of them. And I’d like to see more topics like this covered going into 2011 and beyond.
Tags: books, female sexual dysfunction, FSD, health, language, media, medicine, pain, relationships, sex, sexual dysfunction, sexual health, Sexuality, vaginas, vulvar vestibulitis, vulvas, vulvodynia
[Trigger warning for rape]
The Camera My Mother Gave Me is both one of the easiest and hardest books I have ever read.
Years ago, shortly before I received a tentative diagnosis of vulvodynia by my main gynecologist, I started looking for support and information about what causes vulvar pain. The Camera My Mother Gave Me is one of the earliest books I read about the topic. At the time, it was one of a very few books available that talked about vulvodynia with any amount of detail. Most of my other sources were scientific & peer reviewed medical journal articles or anecdotes from the internet. What sets The Camera My Mother Gave Me (henceforth I shall refer to it as TCMMGM) apart to this day is that unlike informational resources that talk about treatments, it is a memoir. It’s a first-hand personal recollection of author Susanna Kaysen’s life with vulvodynia over about two years.
Yes, you read that right, the author is Susanna Kaysen – this is the same author made famous for her previous memoir, Girl, Interrupted, which was made famous by Hollywood – though I understand the film distorted the facts in the name of artistic license. However, I have not read Girl, Interrupted and will not be talking about that today. Whether Kaysen’s experience with psychiatry in the 1960s has anything to do with her vulvodynia later in life, I cannot say.
So, TCMMGM is both an easy read and a hard read for me. How is this contradiction possible?
It’s easy because it’s short. It’s only about 150 pages with paragraphs double spaced. If you’re interested in reading it, it probably won’t take more than a few hours to finish; maybe a day or two tops. Kaysen uses everyday language instead of heavy academic jargon, so you don’t necessarily need to be a doctor or be familiar with vulvodynia in order to follow along.
But it’s hard because every time I read it, for all the progress I’ve made and improvements I’ve seen over the years, I am instantly transported right back to square one – that daunting, hopeless, barren place where the walls of pain obscure every available path. It’s hard because when I read it, I remember everything… the questions unanswered, the ignorant doctors, the uncertainty …the pain. I’m in my early 20s again and I don’t know what’s going to happen to me.
Another reason this book is so hard for me because no one understands this book unless they have vulvodynia. Perhaps I’m not giving folks enough credit. Perhaps that’s an exaggeration… but not by much. TCMMGM has received mixed reviews, many of them negative. The negative reviews usually contain some variation of gross-out due to TMI or frustration with Kaysen’s lack of progress in treating her pain medically. It’s TMI and gross because vaginas and vulvas are generally considered vulgar and gross – at least outside of feminist circles – sometimes even within feminist circles, because don’t talk about vaginas too much or else you reduce yourself to a big walking vagina – and thus it’s a shock to read such frank language and descriptions about the vagina. Frightening, too, to have to think about an area that’s supposed to be capable pleasure feeling instead only pain. If readers are frustrated with Kaysen’s lack of progress, that may be because Kaysen herself was frustrated and was deliberately trying to convey that feeling – trying treatments she felt comfortable with, avoiding the ones that she didn’t want but that were nonetheless pushed upon her over and over again. When she opened up about her vagina and all its problems, Kaysen also left herself open to invasive personal questions, “Why didn’t she do this, why didn’t she try that.” If the book feels unresolved at the end, that’s probably because vulvodynia is itself a chronic problem, often with no clear resolution. There are still loose ends by the time the book ends, because in Kaysen’s real life the struggle with vulvodynia was ongoing.
So what’s the book about?
The briefest answer is to say that it’s about Kaysen’s vagina. One day, mysteriously, “Something went wrong with it” (3.) Everything else follows over about a two-year period.
A more comprehensive answer is to say it’s about Kaysen’s experiences during a time when she had to re-evaluate her relationship and sexuality as she navigated the gauntlet of modern medicine in search of answers for her debilitating vulvovaginal pain.
Kaysen began experiencing vaginal pain that “Felt as if somebody had put a cheese grater in it and scraped” (3.) The reasons for this pain are never made 100% clear. We learn that Kaysen had a bartholin’s cyst surgically drained some 20 years earlier, and the pain felt intense at the surgical site – but the pain radiated to other areas of her vulva as well. She was approaching the age at which many women enter menopause (though I could not tell what her age was when the pain started.) Her gynecologist initially misdiagnosed Kaysen with a run-of-the-mill infection and prescribed some treatments that probably didn’t do any help. At some points, Kaysen explores the possibility of psychosomatic causes.
This pain interfered with her everyday activities like “Wearing pants” (8), “Taking a bath” and “Too much driving – it hates that” (146.) She maintains a pain diary, measured on a scale of 0-5, with her pain frequently hovering around a 2 and sometimes spiking above 5. She had good days and bad days.
The pain interfered with her sex life, to the point where her sex life and her relationship with her own body fundamentally changed. Very early on, Kaysen tells her gynecolgist,“Listen, I said, everything’s getting worse. I’m really having trouble with sex. My vagina hurts all the time now. If I have sex it hurts more, but it never doesn’t hurt” (9). Unfortunately an expanded definition of “Sex” did not adequately address Kaysen’s problems:
“I tried a lubricant named Astroglide that was more glue than glide. My boyfriend and I tried all sorts of varities of sexual activity: very quickly, so it wouldn’t have time to hurt; without moving, just in there; only fingers in there; nothing at all in there, only outside. Whatever we did, it hurt” (10).
She was not even able to enjoy arousal in and of itself, because “Just getting aroused hurts” (55).
When her pain first manifested, Kaysen visited multiple doctors specializing in different fields. She lived in Boston at the time, which is home to some real-life vulvovaginal specialists. She visited her gynecologist, an alternative medicine practitioner, an internist, a vulvovaginal specialist, and a physical therapist. Some of these doctors pass her off to other doctors – notably, when her primary gynecologist was stumped, Kaysen felt that he was “Washing his hands of me! After twenty years” (9). She was tentatively diagnosed with vulvar vestibulitis and tried multiple treatments – conventional western style and alternative – but none of them were right for her. Kaysen was acutely sensitive to side effects, and in some cases the side effects just made things worse. Even physical therapy, a treatment that I had very good luck with, only set her back farther. (Having a crummy physical therapist who ignored her wishes probably didn’t help.) Other treatments, notably surgery, she did not want to try, though the doctors and her boyfriend pushed and pushed.
The doctors left Kaysen with a lot of unanswered questions about vulvar pain…
With her gynecologist:
So what is it? I asked him.
I don’t know, he said
But what is it? I asked him. What’s wrong with me?
I don’t know, he said. (9).
With the internist:
But why does it hurt all the time? I asked. Why does it hurt when I’m not having sex? When I’m sitting on the sofa?
I don’t know, said Doctor Matthew (21).
With the vulvar specialist:
Why did this happen? I asked him.
Eh, he said. He shrugged.
What is it, anyhow?
Eh, he said. He returned to the stool and resumed his Q-tip (28).
What’s the matter with me?
You have a sore spot, he said (30).
WELL THANK YOU, CAPTAIN OBVIOUS!!! A sore spot! Of course! Why didn’t Kaysen think of that?! That explains everything!!!
It goes on like that in some fashion over the whole book. Just as it continues to go on day after day in real life for still all too many women.
[Trigger warning for rape]
Kaysen’s nameless boyfriend was not sympathetic to her situation or open minded about the kind of sex he wanted. For two years prior to the events described in TCMMGM, Kaysen and her boyfriend had enjoyed a sexual relationship. Her partner had a strong interest in sex - “It was one of the things I had loved most about him” (95), though they never say “I love you” to each other. But when sex hurt, Kaysen began to lose interest in sex. While they stayed together for the first year that she looked for treatment, the boyfriend nagged and coerced Kaysen to have sex with him – even if it meant she was performing against her will. Readers of this blog would probably recognize what Kaysen describes as rape. She didn’t say no, she acquiesced under pressure, but certainly she stopped giving any kind of enthusiastic consent. She spends days after sexual activity coping with the painful after effects. Kaysen herself never uses the word rape to describe what she went through with her boyfriend, even when it caused her to disassociate during the act and left her in physical pain for days afterward. When asked by a biofeedback specialist if she had ever been sexually assaulted, she answers “No,” but when the question is rephrased to “Have you ever had sexual relations against your will,” Kaysen says “Yes” (82). When she recounts the last straw to her friend, Kaysen questions herself, her boyfriend’s actions, her own fear at the time, and what actually happened.
Even after evicting her boyfriend, Kaysen continues to feel pain long-term. It wears her down over an extended period of time. “Low-grade pain is debilitating in a subtle way” (121.) Eventually she loses interest in sex, and this is a painful experience for her, but in a different way. When Kaysen talks about sex and eros, it’s clear to me that prior to these events, she really did enjoy sexuality in her life. For her, it was a source of unpredictability. At one point, after throwing her boyfriend out of the house and struggling to rediscover pleasure from what once felt only plain, she tells a friend, “When eros goes away, life gets dull. It’s as if I’m colorblind. The world is gray” (125.) She eventually decides that the best course of treatment is to stop treatment. Eventually she makes a limited, partial recovery… But by then her relationship with her vagina, vulva and her own sexuality are fundamentally changed. Maybe forever.
Kaysen’s language may be plain and easy to understand, but it’s not without criticism. She uses frequently the word “Vagina” even though a more accurate word is “vulva.” Or maybe it is accurate for her to describe her pain as vaginal, since with vulvodynia the pain can radiate and spread beyond the vulva. In practice, when the pain feels like it’s everywhere, it can be very hard to pinpoint. One social construction argument against female sexual dysfunction as a valid diagnosis is that women with sexual problems may not be educated enough to understand their own anatomy; however Kaysen demonstrates that she is aware of her own anatomical structures and function.
Overall though, I would hope that readers accept Kaysen’s idiosyncrasies and simplified language. She uses other inaccurate terms, most likely as deliberately as she chooses to forgo with quotation marks when recalling conversations. She refers to her doctors as the “Vulvologist” and the “Biofeedbackologist” instead of as “The vulvar specialist” and “the physical therapist.” But when you’re encountering these specialists for the first time, perhaps not knowing such fields even existed before, what else are you supposed to call them??? The title of the book itself is an error. The title is based on Kaysen’s memory of a scene in a movie, with some artistic license exercised. (According to this interview with Kaysen about TCMMGM, technically the title of the book should be The Camera My Father Gave Me.) She receives materials from the “National Vulvodynia and Vestibulitis Association” instead of National Vulvodynia Association. And so on…
But this is her story in her words. I hope we can forgive her for taking liberties with some of the language – though it does have some disableist moments that are questionable and perhaps not so flexible.
I don’t know if Kaysen ever found relief for her pain in the years since TCMMGM came out, though it seems unlikely. Around 2003, the following was written about her on Salon.com:
Though she lives in the Boston area, the doctor capital of the world, Kaysen never found a workable medical treatment. Today, Kaysen hasn’t so much lost or won her battle; rather, she’s signed a treaty, with massive concessions. “Celibacy is a great cure!” she said wryly in a recent phone conversation. “I wasn’t interested in having sex again. The only thing I was interested in was not having pain. Pain eclipses desire.”
So who might be interested in reading TCMMGM? Who might benefit from exposure to such a taboo subject and who should approach the book with caution?
If the reviews online are any indication, many readers will be disappointed and frustrated with the book, but a few will strongly emphasize with what Kaysen went through. I am one of those people, and would like to see more people read and attempt to understand Kaysen’s situation. The frustration that so many reviewers are left with may be exactly what readers most need to feel, to better understand the frustration that still too many patients with vulvodynia have to deal with when running the gauntlet of modern medicine in search of adequate treatment.
The book is a memoir of one woman’s experiences with what is probably vulvodynia, and therefore it should not be taken as an advice or how-to book. This is all stuff that happened to Kaysen. It’s not necessarily going to happen to you. Some readers with a history of vulvar pain may find the book depressing because at so many points, things appear hopeless. Others take comfort knowing that they are not alone. It’s been a few years since the TCMMGM came out too, so there have been some advances in treatment since Kaysen conducted her own research and treatments. Your mileage may vary.
TCMMGM is short and small, but it’s not light fare. Although it has moments of dark self-deprecating humor, it’s not something to read if you want to feel good (except perhaps through schadenfreude.) It’s kind of a downer, to be honest. Because Kaysen describes a rape and post-rape scene with frank language, the book may be triggering to those with a history of sexual assault.
TCMMGM is available online from several retailers and it is available in E-Book format for Kindle. If you’re still interested after reading all this, then may I suggest that you make a purchase through the NVA’s book list, since they have a referral program set up for financial support.
As with all reviews conducted at Feminists with Female Sexual Dysfunction so far, I had to pay for TCMMGM with my own money, and I receive no compensation for posting a review of it.
Tags: doctors, experts, female sexual dysfunction, Feminism, FSD, guest post, health, medicine, pain, sexual dysfunction, sexual health, vulvar vestibulitis, vulvodynia
Dear internet, we have a guest poster today! The following was written by Simone, who blogs over at Notes for a Feminist Rebellion.
I’m a twenty-something aspiring mathematician, who roams the internet under the name of Simone Lovelace. I am Jewish, bicurious, and whiter than the day is long. I’m in a long-distance relationship with a wonderful man, and I have female sexual dysfunction.
I’ve had dyspareunia (pain with vaginal penetration) since I first became sexually active. Over the years, I’ve tried a number of do-it-yourself treatments. I’ve gone through gallons of lube, tried increasingly bizarre positions, and switched to all-cotton panties. Nothing worked. Finally, this spring, I decided to see a doctor.
Since then, I’ve visited several medical professional in two U.S. states. I still don’t have a diagnosis, and the treatments I’ve tried have been useless. Right now, I’m not too concerned about this. Dealing with FSD is a process. If it takes me a while to find the right treatment, then c’est la vie.
One of the things that has surprised me most in my FSD journey is the range of attitudes I’ve experienced from my doctors. These have run the gamut from compassionate and respectful to judgmental and mildly sadistic.
Finding a supportive doctor can be a crucial step in managing FSD. On the one hand, dealing with a judgmental doctor can be incredibly painful. On the other, a compassionate doctor can be invaluable—particularly for someone with a condition as complex and personal as FSD.
When I first sought help for my FSD, I was finishing college in southern California, and the on-campus clinic was my only real option. I called up Student Health Services, and got an appointment with a woman I’ll call Dr. H.. Unfortunately, as it turned out, working with Dr. H. was more traumatic than helpful.
Dr. H. was judgmental about my sexual choices, and inconsiderate of my feelings. During my first appointment, I told her about my symptoms, and gave her an outline of my sexual history. Since I was menstruating, Dr. H. couldn’t give me a physical exam that day, but that didn’t stop her from speculating about possible diagnoses. There are a number of conditions that cause dyspareunia, most of which are quite treatable. Some are sexually transmitted diseases, but many are not. Dr. H., however, mentioned only two possibilities.
“Well,” she said, “That could be herpes, or HPV. I’ll have to run some tests.”
I was shaken. It was as though I’d come in with a headache, and been told, “Well, it could be cancer.” An untreatable STD was my personal worst case scenario. I wasn’t worried for myself, so much as terrified that I might have given my boyfriend an incurable infection. We’d always played it safe, but my protection had failed me before. Despite using condoms with every partner, I had gotten a case of chlamydia in the past year.
It’s possible that Dr. H. was simply ignorant of the many conditions that cause dyspareunia, all except HPV and herpes. However, it seems implausible that a doctor would be unaware, for example, that insufficient lubrication causes sexual pain. To me, it’s far more likely that her bizarre behavior was the result of bias.
In retrospect, I’m pretty sure Dr. H. disapproved of my sexual choices. Most likely, she saw me as irresponsible and promiscuous—a “slut.” In American culture, we have an unfortunate tendency to view STD’s as punishment for deviant sexual behavior. Perhaps it was Dr. H.’s whorephobia that lead her to focus on the possibility of that I might have an STD, and ignore other options. And perhaps it was the same prejudice that prompted her to be so cavalier about what, for me, could have been a devastating diagnosis of herpes or HPV.
When I was about to leave, Dr. H. asked me about my positive chlamydia test. I told her that I wasn’t sure how it had happened, but that I’d taken antibiotics, which had cured the infection. Dr. H. responded with a few words of wisdom.
“Given your history,” she said, “the most important thing is that you minimize your number of sexual partners, and practice safe sex.”
Now, safe sex is a good thing. And I don’t think it’s unreasonable to advise someone whose STD status is uncertain to be abstinent. But judging from Dr. H.’s phrasing, she seemed to think I was barebacking with a new man every night. I had already told her that I was in a monogamous relationship, and that I always used protection. Being accused of promiscuity didn’t phase me; what bothered me was being accused of infidelity, and called a liar to boot.
As her comments indicate, Dr. H. used my “history” as an excuse for making wild assumptions about my lifestyle and my physical health. This sort behavior is both immoral and dangerous. A doctor who is busy passing judgement on her patients’ personal lives is in no position to provide quality medical care.
In addition to being judgmental, Dr. H. was indifferent to my pain. She never showed sympathy, even when I was in obvious distress. During our second appointment, she gave me a pelvic exam. Naturally, I found this very painful, and I whimpered a little. At this, Dr. H. asked if the pain was similar to what I felt during sex. When I told her it was, her response was simply “Oh.”
After the exam, Dr. H. told me that everything was normal, and I was free to go. When I asked if there was anything more she could do, Dr. H. responded that painful intercourse was just an issue “some girls have.” She then suggested that my problem could be psychological, and that I might need anti-anxiety medication.
Dr. H.’s claim that dyspareunia was simply a problem “some girls have” was both ignorant and hurtful. It was irresponsible to suggest that I give up hope, just because the exam had turned up nothing. At the very least, she could have told me there was nothing she could do, and referred me to a local gynecologist.
When she dismissed dyspareunia as something “some girls have,” Dr. H. was implicitly refusing to treat the pain itself. There are numerous techniques for managing vulvar pain, from acupuncture to topical anesthetics. But Dr. H. wasn’t interested in treating my symptoms. Vaginal pain, in and of itself, didn’t strike her a something that warranted her attention.
Finally, Dr. H.’s comment about my pain being psychological was absurd. While FSD may have a psychological component, it is rarely a purely psychological problem. Dr. H. had no reason to assume that my pain was of psychological origin, or to recommend psychotropic drugs.
That appointment was the last I saw of Dr. H.. My STD tests, incidentally, came back negative.
I’d like to say that my experience with Dr. H. was a fluke, but I’ve heard similar stories from other women with FSD. It seems that many of us face the sort of problems I encountered with Dr. H.. American culture has highly repressive views about women’s sexuality, so perhaps it’s not surprising that women with FSD have a hard time obtaining medical care. Many doctors are simply uninformed about FSD; others are actively dismissive of women’s sexual issues. Too often, women with FSD must contend with doctors who judge us for our sexual choices; dismiss our problems as unimportant; or tell us that it’s all in our heads.
If at First You Don’t Succeed…
After graduation, I went home to Boston for the summer. There, I paid a visit to my usual healthcare provider, a physician assistant whom I’ll call Carol. In terms of treating my FSD, Carol was not very helpful. For starters, she didn’t give me a diagnosis. By this point, I had done a fair amount of research, and become convinced that I had vulvodynia, a vulvar pain disorder of unknown cause. In particular, my symptoms correspond to a subtype of vulvodynia called vestibulitis. While Carol did mention vulvodynia as a possibility, she made it clear that she knew little about the condition.
Although she wasn’t sure exactly what was wrong, Carol did prescribe some treatments. She gave me a set of vaginal dilators, which I’ve been using daily for the past few weeks, and an anesthetic cream to make dilation less painful. So far, these have proven essentially worthless. The cream burned badly on contact, and any subsequent numbing effect wore off too quickly to be useful. I soon decided I was better off dilating with it. Moreover, I’m skeptical of the dilation treatment itself. I don’t have muscle spasm or vaginal tightness, so why would I need to dilate?
I’m not too bothered by Carol’s inability to instantaneously cure my FSD. Carol is a P.A., not a specialist in vulvar pain disorders, and I didn’t expect her to give me a miracle cure. What I want to stress about Carol is that she was incredibly kind and respectful. During my visit, she was actively supportive in several key ways.
She was careful not to jump to conclusions. Carol took a detailed history, asked numerous questions, and gave me a physical exam. Only then did she begin suggesting possible diagnoses and presenting treatment options. This sort of diligence can be invaluable in any non-emergency medical situation. It’s particularly crucial in treating a complex, multi-factorial condition like FSD.
She took what I said seriously. Carol was never dismissive of my concerns, and she did not treat me with suspicion. Our conversation felt like an exchange, not like an interrogation.
Carol trusted me, even when I said things that didn’t fit the stereotypes about women with FSD. When she asked if I had any negative attitudes toward sex, I responded that I didn’t think that was an issue. I was comfortable with my sexuality, had no moral qualms about intercourse, and enjoyed non-penetrative sex. Carol took my answer at face value and moved on. I cannot overstate how much I appreciated that simple act of respect.
She was open and non-judgmental about sex. Strangely enough, there are still doctors who still blush at the word “vagina.” Carol, on other hand, seemed perfectly comfortable discussing my sexual anatomy.
In addition, Carol avoided expressing any judgement–positive or negative–about my sexual behavior. She showed no disapproval when I recounted my sexual history, and she did not praise me for using condoms. Her focus was always on easing my pain, not on policing my behavior.
Discussing ones sex life with a medical professional can feel embarrassing or demeaning. Due to Carol’s respectful attitude, I was comfortable engaging her in a frank, detailed discussion of my FSD.
She acknowledged that my FSD was a real issue. To Dr. H., my pain only mattered if it pointed to an underlying disease. Carol, however, understood that my pain was a problem in and of itself. She was warmly sympathetic when I told her my story, and proactive about trying to find me a good treatment. I’m not too optimistic about the treatments Carol prescribed for me. Nonetheless, her willingness to recommend treatment options sent a powerful message that she cared about my pain, and was invested in helping me heal.
In a perfect world, all medical professionals would be as genuine, thoughtful, and compassionate as Carol was to me. Sadly, many fail to do so. Sometimes, women with FSD may need to accept disrespectful behavior from doctors, just to get the medical care we need. But I think it’s important to hold our doctors to a high standard whenever possible. It’s important to remember that when we seek medical care, we deserve kindness and respect.
With that, I’d like to open up the discussion to you. Have you seen a doctor for your FSD? Was it a positive experience? Why or why not? What words of advice, encouragement, or warning would you give to women seeking treatment for FSD?
Tags: books, disability, experts, humor, news, sex, sexual dysfunction, TMI, vulvar vestibulitis, vulvodynia, what
Submitted for your approval: A series of posts which were each too small to constitute blog entries on their own. Divided we are weak, but together, we are strong! Caution: TMI/NSFW content alert, for frank description of 1 sexual act towards the end. The one TMI/NSFW anecdote included will go behind a WordPress cut, so if you are reading from the main page, you’ll need to click through to go on when the time comes. Everything should still appear in your RSS feeder though, so scroll at your own discretion. Thanks!
The National Vulvodynia Association has released a new e-newsletter! It’s been months since the last one was released in January 2010. Keep in mind, this is not to be confused with their regular newsletter. You need to be a member of the NVA to read their regular newsletter, but the e-newsletter is a .PDF available to the public.
Some highlights I found interesting are below; do check the whole newsletter for more when you have a chance:
The NVA is adding three new self-help booklets to their web resources, available to NVA members. The topics may be of some interest to readers here – First up will be Vulvodynia, Pregnancy and Childbirth, then My Partner has Vulvodynia – What Do I Need to Know? and How to Apply for Disability Benefits. Personally I’m very curious to see what the Partner booklet looks like – the e-newsletter does not use gendered pronouns so here’s to hoping that it doesn’t take an exclusively heterocentric view. But of course I’d like to see the other two booklets as well.
The e-newsletter also goes over some updates in the wide world of vulvar pain. There’s a new clinic open in Miluwakee, Wisconsin. Research and grants remain ongoing. One of the research topics is on vulvodynia and pregnancy, so women with vulvodynia may soon have some rigorous science available to help make decisions, in addition to anecdotes and stories of support presently available. There’s going to be a vulvodynia conference for researchers later this year, in October 2010. Findings from the conference will be published in a medical journal, but the e-newsletter does not say which journal yet, or when. Hm, that’s interesting. I’d like to keep an eye on that. I hope no one stages an anti-vulvodynia researcher conference outside of it.
The last page is dedicated to summarizing the Campaign to End Chronic Pain in Women. You may remember not too long ago, the Overlapping Conditions Alliance went to Washington, D.C. to raise awareness of chronic conditions that disproportionately effect women. There’s links to some videos related to the conference, and the e-newsletter says that representatives met with political representatives, including Harry Reid and Nancy Pelosi. There’s also a request in the newsletter for readers to send an e-mail urging select US government representative to get on board with the Campaign – I’ll just let you click through to that form via the e-newsletter.
Thoughts on a Dear Abby column, in which the writer, a elderly man, writes in asking for advice on communicating about his Viagra use to his female sex partner. My thoughts are: What an interesting way to phrase a question about communication and what interesting assumptions everyone involved seems to be making.
So “Vital Man” writes in because when he went away on a week-long trip, his sex partner “Demanded” that he leave his Viagra with her. Apparently he and his girlfriend are comfortable with him using Viagra during sexual activity, but they don’t communicate about it openly. Vital Man assumes his girlfriend assumes he needs to use it each time he has sexual activity, therefore Viagra is like a tether. If he can’t maintain an erection, theoretically he won’t have sexual relations with another partner.
My thoughts are: Well did he outright lie to his partner and tell her “I need it,” or otherwise deliberately mislead her into thinking something along those lines… or did they not talk about it and he assumes that’s her assumption? What makes this guy think that she doesn’t already know that Viagra is optional for him?
My other thought – maybe she wants to try the Viagra out herself, while he’s out of town. That way she can find out if it has any effect on her, and if not, then no pressure to perform! (That’s what I’d do anyway. That was my first thought!)
In my free time, for fun, I’ve been reading rule books for Dungeons & Dragons. I’m having some difficulty finding a local group to play with, but I’ll keep looking.
Perhaps there’s a deeper meaning to my choice of book types – Dungeon Master rulebooks rather than the player handbooks. Maybe casual players read DM books, too, I don’t know. Or maybe it means I secretly want to control a whole imaginary world and be a level-building world-destroyer.
I once read or heard an axiom that stated something like, any time a new technology comes out, it will always be adapted to sex. I don’t know if that’s an actual expression or who first declared it, (any ideas?) but it sounds about right to me. So of course as I read the D&D rulebooks I started thinking if there was any way to incorporate sex & sexuality into campaigns. Does any group ever do that? Surely I couldn’t be the first one to think of that…
As it turns out, I’m not the first whose thoughts turn to adult situations in roleplay games. I won’t be the last. I’m not going to post a full review of this book, because it’s too embarassing even for me, even on this TMI blog. But I bought, and read everything in the Book of Erotic Fantasy, compliant with D&D rules (3rd edition…) which means the rules are outdated already, but I’m sure they can be adapted to 4th edition rules by a creative DM.
What’s funny besides the bad Photoshops used as illustrations (instead of drawings) is how seriously the book takes itself. Very serious about the rules of sexual roleplay, complete with charts and tables for decision-making and dice-measuring. Very serious and complicated even though in this case the roleplay is done entirely in players’ imaginations, and not performed on each other in the flesh. I think…. in most cases it would not be performed in the physical realm. The exception, I suppose, would be for LARP players. That might be fun to watch.
Since the rules are now outdated and many (if not most) of the rules can’t be applied to real life situations (even one-on-one partner bedroom play – unless you’re really creative,) the Book of Erotic Fantasy is purely For Novelty Purposes Only.
I e-mailed Durex & Lifestyles about the lubricant used on their non-latex condoms (Durex Avanti/Avanti Bare & Lifestyles Skyns.)
According to the e-mailed responses, both brands are coated in silicone-based lubricant. Just FYI for you.
And this is where it gets TMI/NSFW-ish, so here’s that WordPress cut you’ll need to click through from the main page to continue forward at the time of your choosing.