This past June, as some of you will remember, I posted a link to a petition to stop the FDA from approving Flibanserin, a drug the media repeatedly called a “Viagra for women.” I did so with the assumption that my readers would follow the link and read what the advocates who created this campaign had to say about it, rather than taking my short comments as a full explanation of my concerns. It seems that many misunderstood my position. Andrew Hinderliter of Asexual Explorations then made a series of posts all over the asexual communities explaining in more detail the reasons why we should be concerned, which sparked an unexpected explosion of controversy. My own view on the subject boiled down to this: given the lack of proof that the drug actually worked as advertised, and given the great potential for harm that would come from an advertising campaign not just to asexuals who would be falsely targeted by it, but also to women who might be offered this drug as a cure for their genuinely unwanted condition only to find that it doesn’t work, I felt it was appropriate to support such a petition. I had little faith in the FDA to make the correct choice without a strong case against it, as they have been known to screw up on occasion, and so I felt it would be helpful to bolster the cause by showing the FDA how many people were concerned what effect Flibanserin’s approval would have. Had the drug been proven to have a more significant effect, I would have supported it, and focused instead only on the advertising campaign and spreading asexual awareness, but all the evidence I encountered suggested otherwise.
What I did not realize at the time was that the New View Campaign, the force behind this petition, has had a history of alienating women with sexual dysfunctions. As I was shocked to discover, some of us in the asexual community (as well as the feminist community) also have tendencies not only to alienate, but to outright marginalize women with sexual dysfunctions in our attempts to advance our own goals (not that we all share the same goals; we’re too diverse for anything remotely resembling an “agenda” but the point still stands). This was never my intention, and I want this blog to be a safe space for women with sexual dysfunction as well, and so I asked K of the Feminists with FSD blog to make a guest post here to highlight these issues. Due to my unexpected hiatus, this post was long delayed. It was originally written shortly after the Flibanserin fiasco, and has subsequently been edited by K.
Some ground rules for comments: this should be obvious by now, but I will tolerate absolutely no disparaging, insulting, or ablist comments. I would also like this not to get derailed by arguments about Flibanserin itself—that’s old news and we don’t need to rehash it here. (If you really want to talk about it, I guess you could dig up the dead threads on some forum, but I wouldn’t recommend that either, honestly.) What I’d like to see addressed here is how our communities can become aware of and accepting of one another, so that we can work together without any nastiness coming from either side. Whether deliberate or otherwise. So please, by all means, check your privilege before posting a comment.
(By the way, I’d also like to mention that if you are a person who is both asexual and also has a sexual dysfunction, I’d like to hear from you, too! Please contact me at grasexuality [at] gmail.com if you would be interested in making a guest post.)
I am a feminist blogger living with female sexual dysfunction, specifically the pain category of FSD. I have vulvodynia, specifically vulvar vestibulitis, (though at the current moment it is fairly well managed,) and some residual pelvic floor dysfunction/vaginismus. I have been blogging about feminism and sexual dysfunction for two years, in part motivated by frustration with mainstream depictions of sexual dysfunction (or the complete lack thereof.) I approach these topics from the perspective of a white, cis het woman. I am not a doctor or therapist in any way shape or form, so most of what I know comes from personal experience (mine and that of others) & what I’ve read. While I feel I have made good faith efforts to do my homework, what I say should still be taken with a grain of salt, and I do not claim to speak for anyone save myself. Today I am here to try to answer some questions about sexual dysfunction that were raised on a+, regarding sexual dysfunction and flibanserin.
What is Female Sexual Dysfunction? What kinds of FSD are there?
Female sexual dysfunction is a broad term encompassing several types of sexual problems with a common denominator of personal distress. A good overview of sexual dysfunction can be found at harvard.edu. When discussing FSD in general terms it is important to remember there it is not limited to one specific manifestation. In addition to sexual medicine, there’s a lot to talk about with regard to female sexual dysfunction.
There are a few different ways of looking at FSD. The two ways I’m most familiar with looking at FSD are through the medical model and the social construction model.
The medical model is probably the most widely recognized way of looking at FSD. The medical model of FSD looks at sexual difficulties as problems to be addressed medically. It is derived from Masters & Johnson’s work on the Human Sexual Response Cycle. To refresh your memory, the cycle goes arousal, plateau, orgasm, resolution. Deviations from this cycle may be viewed as problems.
An alternative model of FSD has been proposed by the New View Campaign, which petitioned the FDA against approval of filbanserin. Under the New View or social construction model, there are four major categories of sexual problems, which are not necessarily considered “Dysfunctions.” The New View looks at most sexual problems deriving from social interactions and culture, though it leaves a little wiggle room for medical problems on paper. There are still four overarching categories of sexual problems under the New View, and sexual problems can be classified as 1. socio-cultural, political or economic, 2. partner and relationship 3. psychological or 4. medical.
However, personally I’m going with a third option, a disability perspective of FSD, which is something that I haven’t seen described much elsewhere. It’s not entirely my own idea; I’ve had help thinking about this perspective thanks to commenters and bloggers like Flora and Ms.Sexability. Since this is a new idea to me, I haven’t worked out all the kinks yet and don’t think I can do it all alone anyway. But this view more closely matches my experience of FSD than either the medical or social construction models of FSD. I’m hoping this third option will address weaknesses in both the medical and social construction models.
How do doctors currently classify FSD, and in particular, the desire disorders?
Looking at one of my medical receipts, there’s a lot of ways FSD may be classified, and sometimes these classifications are complicated by other concurrent medical problems like infections or chronic conditions. Such acute problems may not be sexual dysfunctions in and of themselves, but they don’t help either.
Clinically, diagnoses of sexual dysfunctions may be guided by discrete ICD codes. It’s possible to receive more than one diagnosis at a time, or a doctor may focus on only one problem. For example the codes I’m most familiar with personally relate to pelvic pain; specifically, vulvodynia falls under code 625.7. I continue to struggle with pelvic floor dysfunction which I’ve discussed with my specialist doctor, although this doctor did not mark the code for PFD on my charts.
However for this discussion, we are probably most interested in sexual dysfunctions under the category of mental health problems, which falls under ICD codes 302.7x for psychosexual dysfunction. With regards to desire disorders, the topic of interest today is probably low desire, more specifically Hypoactive Sexual Desire Disorder (HSDD.) I do not see an ICD code for high sexual desire at this time. I have seen some interest in low sexual desire as a side effect of medication like antidepressants as well though again I do not see an ICD code specifically for that problem.
Unfortunately for some women with FSD, there are also doctors who in practice do not recognize various forms of FSD and these doctors are unprepared to offer any treatment for it, whether the problem be desire or something else like pain. I had to screen out multiple doctors before finding one who could address my pain.
From the point of view of FSD, do you think the definition of HSDD is adequate?
The biggest distinction between HSDD and an ordinary variation of low sexual desire is the personal distress component. HSDD also requires that other causes for low desire be ruled out. That means that in practice you may experience low desire as a side effect of depression or medication, but that would not be considered HSDD in and of itself.
If I could make an improvement on this definition I would leave room for personal identification as well, because I have seen comments from women around the blogosphere who have explicitly stated that they are disturbed by their low or lack of sexual desire. Personal identification, I think, would address some concerns about doctors overdiagnosing HSDD. Or at least it would if not for the fact that FSD is itself a stigmatized condition, which makes many women reluctant to identify as living with sexual dysfunction. So I guess my short answer is yes, with a caveat that I understand where some of the criticisms of HSDD come from – and another caveat I still think it’s unfair to dismiss what individual women who are genuinely disturbed by their low or loss of libido have to say.
Specifically about Flibanserin:
Critics allege that Flibanserin is only marginally effective. Do you think this is a valid point or not?
I would probably be more worried about flibanserin if it was completely ineffective, snake oil, or ambiguous. As it is, my understanding is that the research showed there was a statistically significant change in the sexual satisfaction of patients using filbanserin – but it was a very small change. Like many drugs, flibanserin also carries the risk of side effects. I’d like to see more critics ask women who have HSDD whether or not they might be interested in a drug even if it is only marginally effective, and go from there.
One thing I would like to see is more research on whether or not flibanserin would be more or less effective for specific groups, or more research into what, exactly, it is that makes filbanserin increase libido by the small amount that it does. I’m wondering if there is a way to screen patients who are eligible for treatment with filbanserin or another medication, to ensure that it goes to the patients who are most likely to need and benefit from it. And more research on the potential side effects.
However, I am concerned that even if flibanserin, or any other drug, was found to be clinically effective, there would still be the same amount and types of resistance it is facing today, or even more. I have a feeling that in practice, the effectiveness of a medication found to increase libido will not necessarily ease ethical concerns behind it. I re-posted some comments from a recent feminist blog post about flibanserin, and there were some vocal opponents of any drug that would effectively increase desire.
What are the issues facing someone who has a non-standard sexual orientation and some form of sexual dysfunction?
This is something that I am probably not in the best position to talk about, as I personally lack experience with with non-standard sexual orientation. I am heterosexual.
However, some very good points were brought up by guest poster Flora over on Feminists with Sexual Dysfunction, when she wrote up Heteronormativity and FSD. Likewise, in late 2009 an asexual (or more specifically demisexual/gray-a) woman volunteered to talk about restless genital syndrome (also known as PSAS or PGAD.)
For example, media and medicine is very much cissexist and heterocentric in the United States. While there are some great sex education resources in print and online, other mainstream bite-sized sex advice columns do not do a good job seeing beyond various forms of privilege, which can leave some readers feeling left out.
Folks who aren’t hetero may not be able to get doctors and therapists to treat them seriously when reporting sexual complaints. Consider some typical questions about vulvodynia, which often frame sex as penis-in-vagina heterosexual intercourse. So what if you are a lesbian, or currently unpartnered? You may still have vulvar pain and pain with sexual activity, even if that sexual activity is limited to masturbation. Will a doctor still treat you with the same priority as a married woman?
I have also seen single women describe being brushed off when looking for help for sexual complaints, because the doctors claim there is no reason to need to address sexual complaints while single, for example. On the other hand I’ve also heard stories about professionals who push for sexual experimentation that patients are not comfortable with.
Support groups may not feel welcoming to someone with a non-standard orientation as well, as most (but luckily not all) of the support groups I’ve been a part of feature heavy participation by heterosexual women.
If we are willing to take a disability perspective with sexual dysfunction, then someone who has both a non-standard orientation and a sexual dysfunction potentally faces at least two forms of marginialization. Mainstream resources about sexuality don’t always do a good job of recognizing intersectionality, and even I have felt left out of some discussions. “Well this doesn’t apply to me at all so I guess I can’t participate in that activity. Or I have no guidance about how to incorporate this activity into my sex life with my limits.”
And the million dollar question:
If we see asexuality as an orientation, this implies that it is not chosen, and that asexuals are not necessarily happy with every aspect of their orientation at all times. This may mimic sexual dysfunction. How can asexuals assert themselves as a group without erasing the experiences of people with desire disorders, and vice versa?
Because I have straight privilege and have never had to struggle with questions about my sexual orientation, I am not certain how similar life with FSD is to an asexual life. My understanding is that asexuality is more than a lack of interest in sex, it is a valid sexual orientation – that is, to not be sexually attracted to any gender. But female sexual dysfunction is not the same thing as a sexual orientation. Women with sexual dysfunction may still be sexually attracted to their partners or to a particular gender, but be unable to act upon that attraction due to pain, a lack of libido or difficulty with arousal. For me, it is something that interferes with the expression of my orientation. My problems and personal distress have been around for, oh, years and years now… you would think that the distress would let up after awhile, and to some extent it has, but any number of little flippant comments brings the insecurity and anxiety back to the surface, and I will always struggle with my own body. It’s like I’m always looking behind my shoulder even when I should be feeling the most comfortable. For other women, however, sexual dysfunction may eventually resolve satisfactorily.
To address the next part of your question: When talking about FSD, I am increasingly frustrated with the lack of participation by women who actually have FSD. I think that having a conversation about women without the actual involvement of the women in question is a real problem. Many of the feminist blog posts I’ve seen about filbanserin over the last few weeks have been posted by people who do not themselves give any indication that they have FSD, and who seem not to have taken a proactive approach to reach out to those who do live with it. I am disinclined to reach out to bloggers who write like this, because I don’t feel safe in their spaces.
I understand that there is controversy about the origins and prevalence of sexual dysfunction. So even if it only effects a very small part of the population, is there some way we can focus on that small part? I believe that one of the unintended, unfortunate consequences of framing FSD and HSDD as manufactured by modern medicine is that it invalidates the experience of women who live with these conditions. If FSD does not exist, then women who have it must not exist either, and so there is no need to acknowledge women with FSD. Or, if a woman claims that she does have FSD, then we cannot believe her, because she has been brainwashed by the patriarchy and Big Pharma.
For example, the asexual blogger RavenScholar posted something about HSDD at her blog, cross posted to Renee’s well known womanist blog, Womanist Musings. This post overlooks the important qualifier of personal distress to the person living with low or absent sexual desire in the diagnosis of HSDD. RavenScholar’s post contains among other things, the following problematic language: “How many people will develop actual problems from this idiocy, and how many people will never bother to try and take control of their sexuality and own their bodies because their “problems” can be medicated away?”
The idiocy (itself an ablist term which here implies that anyone who believes in the validity of HSDD is unintelligent, and that is bad and therefore the person is bad,) she is referring to is concerns about marketing for HSDD and sexual medicine. The idea is that marketing will in and of itself create insecurity about sexual performance, thus fueling a demand for medication. “Do I have a problem? Am I good enough? Maybe I should talk to my doctor…” These concerns about marketing are not necessarily invalid, however the way the statement is set up forgets about those who truly do live with sexual dysfunction.
Another implication here is that people who use medicine to address sexual problems are not truly taking control of their sexuality. This is a very old and very sexist belief which has been thrown around regarding women with vaginismus. What’s soul-crushing to me is that she explicitly mentions the physical body too, which to me implies that she is including physical problems. I am someone who genuinely needs medical intervention in order to have the sex life I want and enjoy. For me, medical intervention IS taking control of my sexuality.
Additionally, dismissing FSD as invalid overlooks the intersection of asexuals with sexual dysfunctions. This isn’t necessarily an either/or situation; It’s possible for both to exist at the same time, even within the same person. Whether or not HSDD specifically and asexuality can ever overlap though, I am not certain, due to the personal distress qualifier; however that does not mean that it cannot exist in folks who are not asexual.
On the other hand, it is also important for people with sexual dysfunction and those in their lives (partners, doctors, therapists, etc.) to consider asexuality a valid sexual orientation. Care must be taken when talking about this, in both directions – it is dismissive to tell someone with sexual dysfunction that they are simply asexual, just as it is unfair to pressure someone who is asexual into unwanted medical treatment to create something that isn’t there. Not everyone who has a low or absent sexual desire is by definition sexually dysfunctional. But for those who do have sexual dysfunction and use medication for it, well, what’s wrong with that? This is an area where better education is needed.
Update 10/12/10: I am now closing the comments to this post, as it seems that the conversation has petered out. Should you come to this discussion late and have something to say, I will be guest posting on K’s blog from the asexual perspective shortly, and the conversation can continue there. Or, you can always email me any comments you have for me or for K, whose email is not listed publicly, and I will pass them on to her (provided you are RESPECTFUL, of course). Additionally, I’m still looking for guest posters, so if you’d like to make a guest post on this issue here, get in touch with me!