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…