Talking about FSD: How not to

11/03/2009 at 9:48 pm | Posted in Uncategorized | 5 Comments
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I want to go back and revisit a post from a little over a week ago, my response to an article at The Nation about female sexual dysfunction, and Our Bodies, Our Blog’s coverage of the same. At press time, my reaction was to be consumed with rage. The anger has settled down so I’m merely fuming at this point. That’s about as much of an improvement from me as anyone is going to get.

Let’s go back, and take a closer look to address some other problems that The Nation’s article has. Keep in mind, from what I’ve seen online, this is a pretty typical example of FSD literature. This is just one recent example of attitudes towards FSD, the women who have it, and the doctors who treat them. I am likely going to run into these same problems over and over and over again. I know this, because I already have.

I won’t be able to tackle everything in one night. I need to break this down over a few nights. The post is going to get too big to digest if I try to address everything at once anyway.

Last week, I said that one category of FSD was completely left out of The Nation’s article – dyspareunia, sexual pain. Perhaps we should first look at some definitions of FSD so that you can understand why this omission grates on my nerves.

Under a very common definition of sexual dysfunction, (common enough to appear in Wikipedia,) there are four categories of female sexual dysfunction – Desire, Arousal, Orgasm, and Pain. You can have a problem in any one or more of these categories. Usually when we think of a problem in those areas, the problem is too little desire or arousal, too few or nonexistent orgasm, or too much pain. Wypijewski touches upon only three categories, to the total exclusion of pain.
This is distressing to me, because I fall into that last category of female sexual dysfunction, the one that is all too often overlooked and the one which I have sought medical treatment for. You may also note that Wikipedia mentions that dyspareunia is almost exclusively a female problem – it’s rarer (but still definitely exists) among male-bodied individuals; for example anybody can develop Pudental neuralagia, which is associated with chronic & sexual pain regardless of the patient’s sex.

One problem with this definition of FSD though is that, it doesn’t leave much room for the patient to determine whether or not she actually thinks she has FSD. The definition makes the determination for her – “You have FSD if you have this, that, or the other thing, regardless of your own feelings about this situation.” That’s not fair to the patient, and that’s where we get that big 43% number from – the one that says up to 43% of people have some kind of sexual dysfunction. That big percentage came from a study that made that distinction of sexual dysfunction arbirtarily, based on survey responses. If a survey-taker replied that one event or another did or didn’t happen during sex (Ex. orgasm, erections, etc.) then that study decided it was a dysfunction, without regard to how participants felt about those events.

This study has been criticized for that very reason – shouldn’t participants in these studies have some say over whether or not their sex lives are a source of distress or satisfaction? It’s not fair to make that decision for individuals.

The thing is, even under a definition that includes patients’ own feelings about their sex lives, I still identify as having FSD. For me, the vulvodynia & vaginismus (and recent, recurrent vaginal infections) are strong enough to cause distress in my sex life, which in turn spills over into anxiety in the rest of my life. The anxiety was even worse a few years ago, before I started treatment, since I had no idea of the road ahead – and I was still dealing with some invasive physical symptoms (notably itching & irritation not due to any infections.) For me, I’ve seen quite a lot of improvement in the pain and anxiety from a few years ago, but I need to manage the residual vulvodynia & vaginismus with my physical therapy & alternative medicines, among other things. It’s looking like I have a long road ahead of me yet.

However, it is not fair for me to say that all other vulvodynia & vaginismus patients have FSD. This is not the case for all other pelvic pain patients, as not all will be as distressed as I was. I can speak only for myself.  But I, and I alone, am comfortable with this label. To me, it is as neutral and thank-you-Captain-Obvious as, “White, female, cis, heterosexual, monogamous. Has sexual dysfunction,” or “Sexually dysfunctional.” Yes, those fit me.

Yet vulvodynia itself is somewhat unique in that, it’s not necessarily isolated to sexual pain. It can become, for some patients, a chronic pain condition in general. (And even if the pain is isolated to sexual activity, there’s a pretty good chance that the sexual pain is still going to stick around for a long time. It may just be provoked with certain activities.) That pain can bleed out into other non-sexual areas of life, including sitting, working, playing… It can be a sex pain disorder, but it can also be a chronic pain problem in general for some patients.
A difficult pain problem to talk about openly too, since it involves a mysterious, taboo area. I have a feeling the mystique of the vulvovaginal area and women’s sexuality has contributed to maintaining silence about these conditions up until the last few years. Thanks to the internet, I don’t feel so alone.

It’s also worth noting here that, for some reason, pelvic pain can sometimes overlap with other chronic conditions, like irritable bowel syndrome, intersistial cystitis, endometriosis, fibromylagia, etc. I do not know why this is, and I do not know why I myself do not have these other chronic conditions (to the best of my knowledge.)

So by completely ignoring the existence of sexual pain, Wypijewski has, deliberately or not, contributed to that taboo and ignorance that such pain conditions even exist.

Yet, even though it has not been acknowledged, that sexual pain is still there – it’s just not paid any attention.

Anyway, these four areas – desire, arousal, orgasm and pain problems – are not necessarily the only definition of sexual dysfunction. In response to criticism about the way the medical community handles sexual dysfunction, alternative models have been presented, notably one put forth by someone whose name appears in the article – Leonore Tiefer, pH.D.

Not coincidentally, OBOS has itself reprinted Tiefer’s also-four category definition of sexual dysfunction. Here, it takes an even looser and non-judgmental name, “Sexual problems.” The four new categories are, broadly,

  • Sexual problems due to socio-cultural, political, or economic factors
  • Sexual problems relating to partner and relationship
  • Sexual problems due to psychological factors
  • Sexual problems due to medical factors

Click through the link to read some bullet points & examples under each category.

Even here, under Tiefer’s new grouping, I still exist, since I have sexual problems due mostly to medical factors – vulvodynia, vulvar vestibulitis, and recent infections. At least, I think these count as medical factors, since they can potentially be measured and treated medically. Some folks say that vaginismus is largely a psychological problem; I would disagree with that for my own self, since I’m seeing a very physical basis for mine, and my vaginismus responds very well to physical treatment. Plus counseling with talk therapy would not be the right treatment for me, as I have zero interest in getting sex therapy. (I’m still not fully comfortable with saying vaginismus is purely psychological, because it sounds too much like “All in your head.”)

One interesting note is that, the last section of Tiefer’s new categories actually sounds similar to the traditional definition of FSD – “Pain or lack of physical response during sexual activity despite a supportive and safe interpersonal situation, adequate sexual knowledge, and positive sexual attitudes.” [Emphasis mine.] That sounds very similar to having problems with libido, arousal, and orgasm – and it acknowledges pain. The difference is that Tiefer first turns to and then rules out non-medical reasons for the lack of response before jumping in with doctor referrals. Another notable feature of this definition is that that last category, medical factors, isn’t as well fleshed out as some of the other groupings. Not a lot of sub-bullet points under category four. I don’t know why this is; my guess is that because Dr. Tiefer herself is not a medical doctor, she has a doctorate in philosophy and is a psychologist, perhaps she felt that it’s best to leave medical factors to the medical doctors?

“So many times I don’t think sex is a matter of health,” Dr. Leonore Tiefer, a sex therapist and founder of the New View Campaign to challenge the medicalization of sex, told me the other day.

Or I could be totally wrong.

This kind of statement – that sex is independent of health – terrifies me because I fear it is making it harder for me to find treatment. After all, I’ve run into enough doctors who tell me that my pain is not physical in nature, but all in my head. Because the pain must be psychological, there is no reason to treat me medically. Have a glass of wine and relax. I must not really love my partner then if I’m experiencing pain & anxiety around sex. Maybe I should dump him or work out whatever relationship problems the doctor assumes we’re having. Or maybe he’s not contributing to the relationship enough; maybe I’d want to have sex with him if he would take out the garbage/walk the dog/do the dishes/pick up the kids after school. Or maybe I’m just stressed out in general and somatizing that stress physically – I’m somehow making my vagina sick.
Except not really.

To me, to say that sexual dysfunction – the broad umbrella under which sexual pain falls, including vulvodynia which also intersects with chronic pain – isn’t a matter of health, is like saying that other chronic conditions such as pain in general shouldn’t be treated. And okay, not everyone needs medical treatment for pain… but what about those who want it and seek medication for their chronic conditions?

Well, if you visit Tiefer’s New View Campaign website – you’ll have to Google it because I still refuse to link to it – one of the first images there is a clear anti-pill picture.

Does this anti-pill sentiment apply to pain management & medications used off-label, like tricyclic antidepressants and antiseuzire medication sometimes used for managing vulvodynia? Some of my friends need to take oral pills like those pictured just to make it through the day… Pain management medication. And I needed those antibiotics & antifungal pills because I’m too scared to use traditional at-home remedies for infections. (It’s not a fear due to a lack of empowerment, or ignorance of my own body, or not wanting to touch myself, or not knowing how to use the at-home treatments… it’s fear of upsetting the balance in vaginaland even worse than it already is.)

Does this anti-medicalization backlash apply to researching and developing treatments for vaginal infections like the bacteria & yeast I kept developing over the summer? Does it apply to researching causes & treatments of pelvic pain?

What does medicalization even mean?

Where do we draw the line between researching the how the body works vs. reducing it to component parts? When does a shielding against reduction to component parts turn into maintaining ignorance?  When does protecting women from manipulation by a Patriarchal medical community cross over into patronization? When does protection for our own good become Matriarchy?

I don’t know where those lines are drawn in the sand, but I think it’s been crossed. My metaphorical toes hurt from getting stepped on & steamrollered over, as someone who does identify as having FSD and is told that FSD doesn’t exist. Ow, my toes. They hurt from being told that anyone who does think they have FSD and so seeks treatment for it, is a “Slave,” as Wypijewski has done in her Nation article. Ow, my pride. Ow, my feet. Ow, my vag.

To Dr. Tiefer’s credit though, she did, once, say that dyspareunia is a valid sexual dysfunction & one worth treating. She said it, once, that I know if, in a journal that I had to jump through hoops to get my hands on. I’m referring here to the Archives of Sexual Behavior, 34, 49-51. The title of the article (or editorial, really, it wasn’t a research paper,) she had published is, “Dyspareunia is the only valid sexual dysfunction and certainly the only important one.”

So okay, I guess that I have a Tiefer-approved Hall Pass to go to use the restroom during class and get bugged by hall monitors along the way go to my doctor to get medical treatment.

The thing is, having dyspareunia myself, and seeing how much distress it has caused me, I do not agree with the statement that it is the only dysfunction that is important and worth treating. Who gets to decide what is & isn’t important? Don’t the people directly effected get some say in this? Or are we to disregard what the patients say they want, because they have been brainwashed by unrealistic media images of sexuality, and so do not know what they really want?

It just doesn’t seem fair to me, to minimize the very real suffering that other people experience if their sex life is not even minimally satisfactory, or if someone is genuinely dissatisfied with some parts of their body. It seems so unfair to say that a lack of orgasm is unimportant to a person who feels that it is & is distressed by an inability to achieve one. I don’t think it’s fair to decide on other people’s behalf, what is & isn’t worth pursuing in their unique sex life as they see fit.

Who am I to say that another person’s emotional pain is any less real and less important than the physical pain I experienced? Who is to determine what the best course of action towards resolution is for that person, other than she herself?

Now maybe the resistance to FSD comes from one word in it in particular – dysfunction. It’s a pretty heavily charged word. It says, “There is something wrong with you if your body does not operate like the rest of ours,” ours being whatever majority has organs (in this case) that operate with some predictability and “Success,” however that majority defines success. Dysfunction implies that something is lacking. So the message I hear from outside myself is, “You don’t want to be dysfunctional. You don’t want to be one of those people. You don’t want to have a bad & wrong sex life.” I think I’m kind of an exception since I actually embrace the term. I still say, only half-jokingly, “I have a broken vagina,” when I’m down on myself, even though I know I’m actually very warm & loving sexually. I may be dysfunctional, but that doesn’t make me bad. Seeking medical treatment shouldn’t make me a bad person, either, but, reading articles like this, that’s the message I get. There must be something wrong with me, not because there’s something causing me physical discomfort – there’s something wrong with me because I want to stop being uncomfortable.

But convince other ordinary folks that thier sex life is somehow lacking, and therefore their sex life is bad and wrong, and that they are dysfunctional because one thing or another does or doesn’t happen in bed, and it leaves those folks vulnerable to sneaky marketing designed to make money off such insecurities. “Oh no, I don’t want to be dysfunctional. I want to be normal just like everybody else!” I see pills marketed towards men who have erectile dysfunction, although we do not know whether that target audience is genuinely bothered by a lack of erections. I see creams & gels in the backs of magazines, marketed to women who want to increase sexual sensation, arousal, and/or lubrication, although perhaps those targeted women never really even thought about such factors before.

It sounds to me like one of Tiefer’s big concerns is that Big Pharma is going to play up ordinary folk’s insecurities about having sexual dysfunction and milk the insecurity for all its worth, by cranking out sex-enhancement treatments, like pills, hormone patches, surgeries, etc.

The thing is, I don’t think that the making of sexual insecurity comes from Big Pharma alone. Some of it does, sure; I’ve seen the commercials for Levitra, Viagra and yes, even Enzyte on TV. (Remember Smilin’ Bob? and all the phallic imagery of those commercials?)
But I’ve also seen lots of movies, books, tv shows, magazine articles, internet websites, sex advice columnists, sex therapists, blogs, sex toy retailers, etc., also put out this message that sex should or shouldn’t be a certain way.
Sex should be sacred; sex shouldn’t be taken so seriously; you should be able to have g-spot orgasms; g-spot orgasms are overrated; the clitoris is the primary female sex organ; the brain is the primary sex organ for all; give a girl an orgasm like this guy on TV; learn how to give a great blow job so your husband never leaves you; light a fire under his balls by wearing this lingere; if your boyfriend doesn’t respond to your advances he’s seeing someone else; try this big giant dildo because women like ’em big; enlarge your sex organ because women like ’em big; it goes on….
It’s exhausting and confounding.

And it dosen’t come from Big Pharma. Those conflicting sex messages that say sex should be like this or that and try this toy or that condom – that comes from the culture I live in (I live in US culture.)
Why are we focusing so much on Big Pharma, which hasn’t even yet produced the magic pink equivalent of Viagra for women? Are there enough non-medical treatments for sexual pain so that we can completely turn away from medicine as an option?

I’m not so sure we should be looking at Big Pharma and Big Surgery alone, as the sole source of sexual insecurity and therefore sexual dysfunction. No, I think we may need to look at some other well-meaning but still counter-productive so-called experts on the matter. And I think we may need to look closer at the body’s own cells & chemistry – why did my body manifest vulvodynia in the first place? Why does this happen to some but not others?

Isn’t there a way we can acknowledge the reality of FSD and the value of the medical community in treating it, while still taking a respectful, holisitic view of the patients who have it? I don’t think we should have to completely divorce medicine from sexual health. Can’t we critique how our cultures market sex AND help people attain the sex life we want?

There’s a couple of areas of FSD that Nation article brought up that I still I have left to talk about. I’ll need to flesh out some other ideas over the next few days/weeks/however long it takes. I don’t mean to tease anbody who made it this far without getting bored to tears, completely lost or grossed out, but I need to put this list up for my own reference later, so I don’t forget:

“Female sexual dysfunction” in quotations marks and believing patients at their word – why do I need to prove myself? What about those who have nothing to prove?

Vulvovaginal surgeries (I could probably expand this into genital surgeries in general… there’s enough material…)

The voices of patients themselves – where are they? And how patients are treated in this kind of writing (Hint: Not very well.)

I’m sure there’s more…

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5 Comments »

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  1. I think you might be my hero…I wish that I had the time and energy to devote to my blog the way that you do. Your research and insights are fantastic.

  2. I read your response on Our Bodies, Ourselves to the Nation article. Thank you for discussing your point of view.

    I wanted to share a link to a recent article in Obstetrics and Gynecology. I think it is a fair treatment of dyspareunia:

    http://www.ncbi.nlm.nih.gov/pubmed/19384129

  3. Great post, K. I’ve made very similar criticisms of Lenore Tiefer’s stanpoint myself. Demonizing medicine and big pharma is just as shortsighted as viewing them uncritically. In the end, what counts is our embodied experiences, and no one else has the right to define them for us.

    • Okay so it’s like you, me, and Riba who have looked at it a little differently so far plus hopefully others I haven’t found yet…

      But I got some bad news nobody,

      more of the same.

      I am not gona be able to look at this critically for awhile, but tell me, a I the only one who finds a lot of problems here? “restless vagina syndrome?” oh really? Big pharmacy wants us to feel like we must have sex like porn stars? I was not aware that big pharma was involved in such a thing. I seem to recall my specialist actively trying to dispel any unrealistic notions of sex I might have post surgery, in fact. Not that he had to do so, since, I already knew.

      I just, I don’t get it.

  4. […] problems with the article in question, and have written about some of these problems not once but twice. And when it comes to talking about FSD, I’m still not out of steam […]


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