Tags: depression, disability, medicine, TMI
In my last blog post, I wrote about losing about ~8 months to another bout of depression. I’ve had long episodes of depression off and on since I was a child. It’s been years since the last time I had depression. Frankly, I kind of figured this was going to happen again sooner or later, based on my own mental health history. For a long time though, the depression wasn’t an issue… or whatever depression I did have, could easily be attributed to a more pressing concern – chronic vulvar pain & painful sex! The pelvic pain problems were priority #1.
Eventually though, the depression came back, even though at this point I have most of the pelvic pain under control (most of the time, for now…) (I’ve often thought to myself, ‘If I have a lid on the painful sex and chronic pain, why am I still depressed?! I should be happy for that reason alone!’ Nope. It worked that way for awhile! But then it didn’t anymore.)
As I said in my last post, I started seeing a therapist for mental health counseling… with little to no improvement over about ~6 months. Things came to a head when I developed a new, unrelated pelvic problem – a vulvar cyst. Given my history of vulvar pain problems, the cyst was the last straw. The stress of the cyst + depression pushed me over my personal minimum thresh hold required to justify taking on the risks of sexual side effects due to antidepressants - and the risks of Stigma associated with medical treatment for mental illness. Some of you have heard the litany of Stigma before – I’m talking about having overheard and read stuff like, “Big pharma is inventing new illnesses and making big cash over it! The risks of side effects aren’t worth medication! Haven’t you tried alternative, natural medicine yet? You just need to take some extra vitamins, get some sunlight, exercise, etc. Americans are all over medicated anyway. You should be thankful for what you got! Willpower/Bootstraps!” (Obviously I’m paraphrasing; basically channeling stuff like this.)
I tried it the way proponents of more natural, less invasive, more holistic treatment options suggest.
The non-medical stuff didn’t work out for me.
I wasn’t making progress with talk therapy alone – or rather, talk therapy + the stuff that came out of talk therapy like: recommended reading + some homework exercises + goal-setting + etc. Unfortunately, additional supplemental holistic treatments in conjunction with talk therapy aren’t a practical option at this time either. I no longer have the time, transportation or cash up front to pay for acupuncture treatments. (Plus I no longer have access to my old, trusted acupuncturist.) I’m not comfortable with light therapy because there are questions about light therapy and eye problems for certain people (I’m at elevated risk of being one such person.) Vitamin D & multivitamin supplements don’t do anything on me as far as depression goes. And finally, the last time I joined a gym to work up a sweat regularly, I developed a series of months-long vaginal infections.
So the non-invasive, natural, etc. stuff maybe isn’t in my best interests after all.
Certainly the pressure to conform & minimize what I was feeling – or not feeling, more accurately, since I was shuffling around feeling completely Dead on the Inside – was making things worse. I felt so much pressure…
…Pressure to please some, vague ~idea~ of an expert.
…Pressure to behave, to “Get over it,” to continue to haul around the responsibility for other people’s actions. “Honey that was a long time ago, let it go.”
…Pressure to please all those people, journalists, and Ph.D.’s who claim to be ~just looking out for us after all,~ in steering me away from medical treatments…
…And unfortunately, that pressure to please others played right into the depression to prolong it and make it worse. When I went on the antidepressants, one of the first things I did when I got home with the medication was break down and cry about what a huge failure of a person I am, for actually needing medication. For “Giving up.” For “Taking the first easy way out.” For taking the path of least resistance, instead of confronting my fears head-on. Etc. Etc. Internalized bullshit.
And of course, I wasn’t a failure for needing medication or any other reason really – I’m coming to terms with the fact that I am in fact, not a failure at all. (We’re not quite there yet due to residual depression.) I wasn’t giving up, taking the easy way out, or running from the past.
I was just a person who needed more help.
Not that I should have felt forced to try the other holistic ways in the first place at all. It’s easier to find pressure from Big Pharma to attract customers and try new (or re-patented) old medication in the form of Big Marketing. But the pendulum can swing the other way too, and in my vulnerable state, I got pushed off of the other edge.
I asked my primary care physician to put me on Bupropion, better known as “Wellbutrin” or sometimes “Zyban.” I got a prescription generic for a half-dose (150mg) of extended release bupropion, for $10/month with insurance. I had the option to bump it up to a full (300mg) dose after 4-6 weeks of being on it, if I wasn’t satisfied with the results at half-strength.
It was not a decision I made lightly. In addition to the stigma of depression & using medical treatment for it, I had to anticipate the medication’s potential side effects. I selected bupropion because SSRI antidepressants have the potential to cause sexual dysfunction. SSRIs may cause some patients to experience things like, lower libido or difficulty orgasming, or more rarely, post-SSRI sexual dysfunction. I don’t have those problems; I have a history of pain. But I figure, I’m already stacked behind the 8-ball as far as sex problems go, so I should probably avoid medication that could throw something new into the mix.
One other factor to consider: I am aware that low-dose tricyclic antidepressants can be a treatment for vulvodynia. Part of the reason I stayed off of the tricyclics and opted for surgery all those years ago is that, at that time, I wanted to leave the option for using antidepressants for depression open in the future. I still don’t know if you can a tricyclic with another type of antidepressant, or if you can bump the tricyclic pain-treatment dose up for mental health, and still keep the pain effect in place.
After crying for awhile, I took my first pill. Then another the next day, and so on.
The antidepressant worked.
The bupropion kicked in surprisingly fast – I felt changes within like the first 2 weeks. The incessant, nagging, self-deprecating voice in my head quieted down. I was able to concentrate on my continuing education studies. The knowledge was sticking. I was doing better at work. I was starting to take interest in old activities again. I started to make more progress in therapy. I was remembering stuff I hadn’t thought about in a long time & making connections from prior events to my current beliefs & behaviors. I could actually feel feelings again, including anger! and sadness! and hope, oh god, the hope! The iceberg of depression started to melt & develop cracks… And it was still inherently me underneath the layers of Ice.
It wasn’t perfect. There were some side effects. I lost some weight. The tinnitus I’ve had since I was a kid sounded louder in my head. I had to take the medication in the evening before bed since it made me sleepy. My libido stayed at the same level, and I actually had an easier time orgasming on the medication than I did off it – Not that orgasm was ever a problem for me to begin with; I just felt more physically sensitive to touch on meds. The mental health improvement was noticeable and positive, but not complete. I felt about a 50% improvement in the depression on the 150mg dose. I was getting ready to bump up the dose to the full 300mg.
Then I started losing my hair.
Or more accurately, my hair stopped growing back in. One day I was getting ready to go out, I tied my hair up and saw a bald spot on the back of my head. That’s never been there before and it’s a problem.
It’s not like the hair fell out in big patches or clumps, or like I was shedding any more than normal. The hair was still falling out at the normal rate, there just wasn’t anything new coming in replace the old stuff. The effect was subtle, but over the next few days – and after comparing my current hair to old photos – I confirmed the hair was definitely thinning overall compared to before I went on medication. It’s subtle – probably something only I would ever notice.
Unfortunately that was the deal-breaker for me and bupropion. Please understand that me and my hair are very attached to each other. We’re planning on traveling to Paris together one day, you see. After a few days of deliberation (and feeling self-conscious,) I decided I wasn’t yet ready to change my hairstyle to something better for thinning hair. I talked to my doctor, and I went off the bupropion.
I had one withdrawal effect from going off the bupropion, a headache that varied in intensity from low to high for about a month. It responded to OTC painkillers and eventually went away. I’m still waiting for the hair to grow back though.
This is the point at which I could get angry and shake my first at Big Pharma for causing my hair loss. But actually, when I did the homework to figure out which antidepressants might work for me, I found out ahead of time that hair loss can be a very rare side effect. I was optimistic that I would be in the majority and not experience this side effect. It only happens to something like less than 1% of bupropion users, and usually kicks in after a few months. It’s weird because it kicked in fast on me – I noticed the hair loss about 6 weeks in. (Just to be on the safe side, my doctor ordered some blood screens to make sure the hair loss wasn’t related to some other medical problem. Apparently not.) It’s possible for depression to cause hair loss in and of itself, if it gets bad enough too. So although I’ll never know 100% for sure that it was the bupropion all along, it seems to be the most probable conclusion.
For me, the mental health effects of the medication were overall good enough so that I’ve decided, if I get depression again later… I’m just going to order a hairpiece, go to a nice salon and change my hairstyle… and then go back on meds. I’m annoyed about the hair loss but not angry… because the medication did something nothing else could do. It actually broke through the depression and gave me a rest from the self-loathing. It was worth it.
Unfortunately, I’m now back to relying on talk therapy for further mental health improvements. The medication did what it was supposed to do, but I couldn’t stay on it. It is a conundrum.
I’m not back to square one with the depression, but I’m not “All better” either! I switched therapists and I’m doing better with the current one than my old one. But it’s been rough. There’s a lot of bullshit in my past that I have to address now, and it still derails me.
What, exactly, in my past is so hard to recover from? What got triggered in the first place by recent events? This isn’t exactly a depression blog, and I’m still not 100% comfortable talking about the depression. It figures; I can go on for hours and hours about vaginas and feminisms and sex, but ask me to open up about what’s inside my head and I slam shut.
So let me put it to you this way:
It is simultaneously deeply liberating
and completely devastating
that all those times, when I was a little kid,
saying to myself, “No one loves me,”
Actually, I was right.
Ouch. Ow. Owwww. Oh come on, that’s the revelation?! So that’s what I have going on now. Emotional and verbal abuse?! Generation upon generation of fucked up parenting?! An actual paper trail of documented abuse and bullying?! All culminating in this one moment?! Mainfesting their legacies now?! Of all times?! And now I have to address the current thought patterns and the past stuff?!
What kind of revelation is that?! Why couldn’t have been something like a surplus of excess puppies, or something good. Brain, you’re really going to make me go through this now? Really? If I go through this now, will I feel better about it later?
I feel like Sgt. Hiller (played by Will Smith) when he’s dragging the unconscious outer space alien across the desert in Independence Day.
[Right about at this part of the movie. Remember this? Party like it’s 1996. Description: Actor Will Smith in military clothes, bare arms, sunglasses, mouth agape. Leaning/walking forward. Part of a parachute is draped over his right shoulder; you cant’t see it in this picture but he is dragging an unconscious space alien behind him, along the ground, wrapped inside of the parachute. Erin screengrabbed it @ Hellogiggles.]
Cuz I’m all like, “But no, now I gotta integrate this depression and family history of mental illnesses and develop into a something that I’m not, to get to where I want to be now, except you can’t do that right now, because one day at a time. Especially when you are minus the support that you’re supposed to be able to draw upon internally. Dragging your sorry ass across the desert… And what the hell is that smell!? I could have been at a barbeque!”
The antidepressants helped me crash & then punch out the alien thoughts inside of me - “Welcome to EARTH!” And the thoughts really are alien! But now that they’re quieter, I have to still have to deal with them, take them somewhere safe and figure them out.
Tags: books, communication, disability, media, sex education, TMI
I recently picked up and finished reading the sexual guidebook, The Adventurous Couple’s Guide to Strap-On Sex, by author & blogger Violet Blue. It’s exactly what it sounds like – an in-depth guide to integrating strap-on sex toys and techniques into partnered sex.
Why are we reviewing a book about pegging on a blog about sexual dysfunction? For much the same reason cited last time we read a book by Violet Blue: Personal reasons + it was in the book queue. Besides, I’ve said it before and I’ll say it again: Sometimes when you have sexual dysfunction, you gotta get real creative, real quick.
The short version of the review is…
Well… I liked the Ultimate Guide to Fellatio better…
The Adventurous Couple’s Guide to Strap-On Sex – let’s call it TACG from here on out – the book is short. I was able to burn through the book start to finish within just a few hours. The Kindle edition I read has 1568 locations (sentences, I think,) which translates to about 160 pages in paperback format. There aren’t any pictures in the Kindle version – there’s not even one of those cut-away academic diagrams of male pelvic anatomy. All of the descriptions of anatomy and how-to are written out in paragraph form.
TACG‘s target audience is cis, heterosexual couples interested in pegging – and pegging, by definition, takes place between cis, het partners. But strap-ons are used in LGBTIQA communities too – so to me, it was weird to see so little coverage of strap-on use outside of straight sex. There was a lot of reassuring the reader that an interest in pegging does not necessarily mean you or your partner is gay. Definitely a book aimed at cis, het couples primarily.
The book includes just about everything you will need to know about strap-on sex and maybe some stuff you hadn’t thought about – anatomy, history, myth debunking, what gear to look for, how to go warm your partner up and then go through with pegging, and safe sex. Actually, I would have preferred to see the section on making strap-on sex safer close to the beginning of the book, instead of at the very end, but there is precedent for saving the best for last – Sex Toys 101 did it that way too. Remember that anal penetration is a risky sex act in terms of passing along infectious agents between partners, because the tissue is delicate, and there’s a lot of bacteria behind the anus. Blue includes a table detailing your risk of infection from anal sex, pegging and related activities and describes tools like condoms & dental dams you can use to reduce the risks.
Remember also that if you’re inserting objects anally, they really need to be designed specifically for that. If you just grab whatever’s handy, you or your partner could wind up with a toy lost inside the body and/or a serious injury – either scenario requires a trip to the emergency room. Blue addresses what kind of butt-friendly toys to look for. Shape, size, and materials all matter, so shop smart. Don’t forget the lubricant, since the anus can’t produce its own secretions the way a vagina can.
Where TACG really shines is when Blue talks about the importance of communication. Pegging isn’t something you can just spring on your partner, and a desire to engage in it isn’t something you can just pantomime out using secret code gestures (no matter what Cosmopolitan tells you.) If you’ve been slacking off in the sexual communication department, Blue lists a few suggestions for how to bring strap-on sex up in conversation – most of these suggestions can easily be applied to other various sex acts as well. Blue also reminds the reader to think about their partner’s perspective, since talking about sex can be (but doesn’t have to be) nerve-wracking. Blue suggets a few areas for exploration if one partner or another is reluctant – what are you the most uncomfortable with, the potential for pain? Insecurity with flipping around gender norms? Cleanliness/messiness/poop? You don’t even know where to start or what else there is to do during? There’s ways to address these concerns.
I liked the section about the history of the terminology of strap-on sex and why you may have noticed a glimpse of pegging here and there in mainstream sex shops, films and discussions. I was also pleasantly surprised by the inclusion of a chapter on how to have strap-on sex with a third party. Opening up a relationship is a little too advanced for me but the book is clearly polyamory friendly. There’s a lot of coverage about various reasons couples might want to try strap-ons during sex in the first place – some reasons include (but are not limited to) the potential for prostate stimulation, aesthetics, and/or fantasy fulfillment.
TACG contains a little information about strap-on sex and disability. Author Blue suggests using a double-ended dildo if you have a wrist injury or mobility problems (location 1188,) and she suggests a vendor from which to procure a harness designed for cis men. (Specific item is here; NSFW; similar products may be available elsewhere.) Why would someone who already has a penis want a harness for a dildo when their equipment is already present? The idea is double penetration of a cis female partner, but in my mind I’m imagining something like it might actually come in handy for couples dealing with erectile dysfunction – especially since Blue states that an erection is not required to use a double harness. TACG describes other harnesses as well; there’s one kind that the wearer can strap onto their thigh or even their head.
A couple of considerations for folks with pelvic pain issues who might be interested in harnesses:
Blue writes that “If you worry about [your pubic bone] getting sore from thrusting, you can buy a specially made pad of thin foam to cushion your pubic bone” (location 1159,) though where exactly one might buy such a pad is not explicitly stated. If this type of pad has a specific name, I don’t know it.
One of the double-ended dildos described in TACG is the Feeldoe, a double-dildo with one bulbous end. It’s designed to have the bulbous end inserted vaginally, leaving the phallic part exposed, for your partner’s enjoyment. However I don’t know how accessible this toy is to folks with pelvic floor dysfunction and/or pain – It looks like something I would find uncomfortable, if not outright painful, to the point of impossible to use as intended. Supposedly it can be used with certain harnesses with some adjustments, but it’s designed to be inserted in the wearer’s vagina.
In general, I would recommend some of the other dildos from Tantus, because I own one I’ll vouch for, they’re silicone & many have a flared base suitable for a harness and anal stimulation – including a few smaller models and plugs.
If you’re a pelvic pain patient interested in a harness, I strongly recommend sticking to two-strap harnesses only. Or harnesses that are worn over some other body part, like the thigh. The problem is that single-strap pelvic harnesses have to be worn between your legs like a thong and thus cover up more of the vulvar area. Two-strap harnesses go around your thighs and butt instead, leaving more area exposed. The distinction between single and two-strap harnesses is described in further detail in TCAG.
Also, Blue doesn’t mention this part, but beware of harnesses with a pouch for a vibrator… Harnesses with a bullet vibrator are supposed to make the experience more pleasurable for the wearer, but depending on how the vibe rests against you, it might just feel like a foreign, hard something digging uncomfortably into your pelvis. It’s like something out of the Princess and the Pea. I personally find it more comfortable to use a vibrator separately either before or after wearing the harness.
If you’re worried about causing your partner pain, then remember that anal stimulation doesn’t have to – and if you’re doing it carefully, shouldn’t – hurt. You might be tempted to share your prescription lidocaine or OTC novelty numbing gel with your receptive partner but that’s actually a bad idea: numbing gels dull everything, which makes deriving pleasure more difficult… and if you can’t feel what’s going on, then you won’t know if you’re getting injured. The book will tell you how to adjust your techniques to minimize discomfort & maximize pleasure.
Remember also that you are by no means obligated to peg if you’re thinking about getting a harness. After talking with your partner, you may decide instead to just wear it around for awhile or to engage in some other non-penetrative activities with a dildo equipped, just for show.
Overall, The Adventurous Couple’s Guide to Strap-On Sex is an okay book. It will be most useful for straight folks – especially cis women – just starting to consider strap-on sex, who don’t know what’s involved. Likewise, it will be useful for straight men who want to be on the receiving end, but never tried it before.
TACG becomes less useful if you’ve already had exposure to strap-on sex, either through experience or though some of the free how-to guides available on sexuality websites. The trick is, if you’re thinking about trying strap-on sex, then chances are you’ve already looked at those free how-to guides before picking up the book.
I wouldn’t recommend TACG be your first book purchase by Violet Blue. My overall impression is that IMHO I think she put more effort into some of her other stuff. There’s nothing wrong with the book; It contains good factual information & encouragement! I just liked some of her other sex guides more. Franky I thought that some parts of the book were drawn out longer than necessary – I basically skimmed through the chapter about male anatomy because I’ve seen it all before… And I skimmed over the erotic vignettes. The short stories are fine; I have no problems with the writing, though they are several pages too long. They’re just not my taste. Obviously, YMMV!
In summation: the $10-$15 retail price investment will be best for newcomers, with less bang for buck the more experience & knowledge you already have about strap-on harnesses & how to use them. More experienced readers may find it useful as a reference from time to time.
Disclaimer: As with all products reviewed on Feminists with Female Sexual Dysfunction to date, I had to pay for this book out of pocket with my own money, and I don’t get any compensation for writing this review.
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: accessibility, bladder, disability, health, interstitial cystitis, medicine, pain
Disclaimer: This post should not be taken as a comprehensive overview of interstitial cystitis, and it isn’t medical advice & isn’t meant to diagnose or treat any disease. There are a lot better resources for IC than this blog, if more information is what you’re looking for.
What I know about interstitial cystitis -
Interstitial cystitis (IC) is a condition that causes discomfort or pain in the bladder and abdomen. It is far more common in women than in men. The symptoms vary from case to case. Some people have an urgent or frequent need to urinate. Women’s symptoms often get worse during their periods. They may also have pain with sexual intercourse. [More @ the link.]
From the Interstitial Cystitis Association:
Interstitial cystitis (in-ter-stish-uhl sĭ-stī’tĭs), or as we call it, IC, is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go). [Click link for more.]
From the Interstitial Cystitis Network:
Interstitial cystitis (IC), also known as bladder pain syndrome (BPS), painful bladder syndrome (PBS) or hypersensitive bladder syndrome (HBS), is a condition that results in “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes.” (2009 New American IC/BPS Guidelines).The symptoms can vary greatly between individuals and even for the same person throughout the month, including an urgent need to urinate (urgency), a frequent need to urinate (frequency) and, for some, pressure and/or pelvic pain. People with severe cases of IC/PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia). [Go to main site for more.]
So why am I bringing this up now?
I recently went through a life change which I remain evasive about describing. What you need to know is that this change has put me in a position where I have to face the fact that my own urinary habits are causing significant problems for me and my loved ones.
My urinary frequency and urgency is not normal. We’re talking, using the bathroom upwards of 10, 20, 30 times per day, and anywhere from 2-10 times per night. On bad days I may have to use the restroom multiple times per hour.
I do not have urinary incontinence – I just have to go, now. In fact, excuse me —
— *ah* much better… For awhile…
Now seeing as this is a health problem connected in some way with my urogenital tract, unfortunately I suppose I need to pre-empt the ubiquitous question, “Have you considered the possibility that it’s normal for you??? How would you know???” with a response of, “Yes I suppose peeing excessively is normal for me, but it’s certainly unusual enough so that I’ll clearly stand out in comparison to the majority of people. Furthermore based on what I’ve gone through already, you don’t want to be out on the town with me and I don’t want to be with you because you will lose your patience after a few rest stops.”
I don’t know anyone else in meatspace who experiences urinary urgency and frequency to the degree that I do. I think it’s time to investigate the possibility of interstitial cystitis and similar conditions on top of my other pelvic problems.
For me urinary frequency and urgency is a long-term problem. Growing up, my parents and teachers disciplined me for using the bathroom so frequently, which just made things worse and pushed me further into denial. As I grew up, it just never got any better. When I was getting physical therapy for the pelvic floor dysfunction though, the urinary symptoms improved a little.
When you have urinary frequency and urgency, it can be a red flag a couple of other chronic conditions, like diabetes. Diabetes hasn’t been ruled out or looked into. But I’m not sure it’s even worth looking into, since I don’t have most of the risk factors and symptoms of diabetes. Another possibility I should rule out is thyroid problems, which are also associated with frequent urination – though again, I don’t meet most of the risk factors or symptoms for hypo- or hyperthyroidism. (At least, I don’t meet the criteria yet – I do have a family history of thyroid disease so I need to be alert for that down the line.)
But I do have co-existing pelvic floor problems… it just seems like too much to be a coincidence. Maybe I should look at related pelvic problems instead.
According to popular IC resources, I have more of the symptoms for IC than I do symptoms for diabetes or thyroid conditions. Other chronic condition (vulvodynia (and vaginismus/PFD)) – check. Chronic urinary frequency & urgency – check. Symptoms worse before period – check. Sexual pain – check.
A complication folks with IC may face – Disruption of social life – check. When I know I’m going to be in transit for a prolonged period of time, I have to consider the availability of a rest stop. If I don’t expect to find one, I have to strictly limit my fluid intake – or else not go out. I have missed out on some social interactions because I knew that I wasn’t going to be able to control my urinary urgency – and I was afraid of the physical discomfort or being made fun of for it.
I’m at the point now where I can’t eat or drink anything for breakfast at home if I know I’m going to be out and about a little later. Because the food & drink I like will make me pee. Repeatedly. The morning commute isn’t long; however, there aren’t many rest stops along the way. Stopping to use one of the few facilities will disrupt the commute to the point where stopping isn’t worth it. The city where I live is relatively accessible for people with mobility disabilities – but significantly less accessible for people with bladder problems. (I can’t help but notice that the nearest IC support group is located in a smaller town outside the main city.) Everywhere I go there are signs posted in windows that say “No public restrooms” “No restrooms” etc. And the publicly available restrooms are spaced far apart, often with limited hours. Most shop keepers let you use the rest room if you are a customer – but even then the facilities are often kept under lock & key. And so far since the life change kicked in, I have been to one business that flat-out refused to let me use the restroom during an emergency – even though I was a customer. Since that event, I reviewed restroom tips on the IC help site, downloaded some recommended bathroom finder apps to my mobile device and watched a helpful YouTube video about travel tips for folks with IC, (no transcript) hoping to get advice on how to deal with too much pee.
The challenge is that I don’t have one of the most commonly reported symptoms of IC – pain.
The only times I’ve had pain with urination have been when I had an actual urinary tract infection. There have been only a handful of times when I’ve had bladder pain – all of these times happened when I was in transit somewhere and whoever was doing the driving could not or (or in some genuinely malicious cases, would not,) find a place to stop and go. I know what bladder spasms feel like.
I feel pressure when I have to urinate… discomfort… but it’s only crossed the line into pain a few times, usually for reasons I could pin down.
So without this important symptom, pain, I don’t have as much of a motivation to go to the doctor to seek a diagnosis in the first place. Even though I know there is not one way that all people with IC act, even though I know that symptoms vary from person to person, I still have this uneasiness about even entertaining the possibility of IC. It’s denial – how dare I consider possibility that I have a chronic health condition; it’s not really that bad, right? Then comes the internalized messages from my teachers and family, that it’s all in my head; I just think I have to pee.
Still, without the pain symptom, I don’t know if I would meet the criteria for IC. I might have something else like overactive bladder. Or I could just chalk the urinary problems up to my piece of shit pelvic floor. (Or maybe my teachers were right and it really is all in my head and I just think I have to pee and all I really need is discipline. At age almost 30 *rolls eyes* Or maybe I’m just one of those people with a “Small bladder.” You know, just like how lots of folks with vaginismus have a “Small vagina.” Not really, most of the time. It can happen, but it’s fairly rare.)
The other problem is I am absolutely terrified of some of the tests usually used to diagnose IC. The cystoscope, in particular, makes me want to crawl into a hole and never come out until the doctor goes away. (Except that I’ll eventually have to come out, because I will have to pee.) There are other, less invasive tests and procedures that can be used to diagnose or rule out IC, so I may be able to find something I’m comfortable with, eventually.
But even if I do investigate IC and get some kind of diagnosis, whether with IC or another health problem, there may not be much I can do about it. As with vulvodynia, there are treatments but no real cure for IC. It’s another long-term, chronic condition, so if I have it, realistically I’ll just manage it on my own with some non-invasive lifestyle & diet changes or with some medical tools. Likewise with diabetes, thyroid disease or overactive bladder. After almost 30 years like this, I it’s hard to imagine ever not having to pee at any given moment.
So I am not saying that I have IC. I don’t know. I have something I need help with and need to investigate further. And providing some links for reference – yours & mine. It has been going on for awhile, but I was able to ignore it until now. I can do so no longer.
Tags: books, communication, disability, experts, media, oral sex, sex, sex education, sexual dysfunction, Sexuality
Case in point from the recent Shorties II post: Presenting a book review for the purposes of sex education + product evaluation. The book in question at this time is, The Ultimate Guide to Fellatio: How to go down on a man and give him mind-blowing pleasure, by Violet Blue. Now in case you’re wondering, “K, why is there a book review regarding fellatio on a blog about female sexual dysfunction?” The answer is, “I decided to read & review this book now, mostly for personal reasons. Also I need to clear away some stuff in the book backlog before I can justify making any new literature purchases.” I read the Kindle version, second edition, which tops out at about 2,400 locations or 256 pages. Here’s a Google Books preview to get you started if you want to look at it.
The Ultimate Guide to Fellatio covers a lot of ground. It’s not just a book of tips written just for people who perform oral sex; it’s for the recipient of oral sex as well. For both the giver and receiver, there’s a lot to think about – what to do, what’s happening to you and your partner, and ways to make sure both parties feel physically & mentally comfortable during the act.
The book provides a detailed anatomical explanation of the relevant body parts – mouth, tongue, throat, penis, testicles, and yes the anus, prostate and pubes. Body fluids are described in frank terms. Blue does present some bullet point lists of tips, but she also provides detailed, how-to instructions that wouldn’t have fit in a short list. She also addresses the cultural baggage and negative attitudes around fellatio – sexuality, especially men’s sexuality, tends to get oversimplified (“Insert tab A into slot B…”) and fellatio in particular is often associated with dominant & submissive gender roles. It doesn’t have to be that way. On the other hand, for some folks, D/S gender roles are a turn-on, and Blue acknowledges this flipside as well in the discussion of BDSM and fellatio towards the end of the book.
The Ultimate Guide to Fellatio is particularly helpful when it comes to safe sex. There’s a chapter talking about ways to make oral sex safe between partners (the pros and cons of various barrier methods are discussed at length,) and the safe sex chapter even includes charts detailing the probability of contracting STI’s from giving or receiving oral sex. One interesting feature about the charts was the inclusion of the probability of contracting vaginitis (a vaginal infection not necessarily caused by STI pathogens,) from giving or receiving fellatio – the risk, according to the chart is, “N/A,” (location 661) or not applicable. Still I thought that was neat to remember it at all. I guess a chart including the risk of contracting vaginitis would be more relevant in the related Ultimate Guide to Cunnilingus book. Which I should probably also read and review.
Throughout the book, Blue addresses erectile dysfunction and disabilities - not just limited to physical disabilities; she explicitly wrote a paragraph on Attention Deficit Disorder, for example. I appreciated the inclusion of these topics. Blue makes it clear that, even if you or your partner are dealing with erectile dysfunction, chances are that fellatio will probably still feel good. (If you’re not certain, ask – the book emphasizes over and over again that communication is important.) Interestingly, Blue points out that certain disabilities may make sexual stimulation painful, even when there’s a penis involved rather than a vulva – she focused on Multiple Sclerosis in particular as a potential cause of sexual pain. With disabilities, erection, orgasm and/or ejaculation may be impaired, but that does not necessarily mean that the penis is non-responsive and that the owner of it does not feel and react to sexual stimulation. For people with disabilities such as spinal cord injuries, she also mentions “Phantom orgasms,” something I’ve seen talked about elsewhere – orgasm isn’t just a body reaction; the body is a shortcut to the brain. There’s still some parts about disability we can push for improvement on though; for example she uses the term “ADD sufferers” (location 1445) which implies that ADD equates with suffering, and at one point she says “You should never consider a disabled man asexual” (location 1432,) by which she probably means that it isn’t fair to de-sexualize people with disabilities… but then again with this quote, you get the whole asexual erasure thing going on. So it’s probably better to not make assumptions about the sexual orientation of people in the first place.
The last part of the book covers resources for learning more about fellatio, and these resources often coincide with learning more about sexuality in general. For example, the contact information for sex-positive retailers is printed (some of it may be outdated at this point though, because the book was originally printed in the early 2000s – you may have to Google some information to confirm if its still current.) There are some suggestions for pornographic yet educational films and how to enjoy them.
For the most part, I felt the book was written with a cis-gender heterosexual audience in mind. The book does talk about how to give and receive fellatio when performed on a strap-on dildo and how the act of fellatio can be subverted into a means to bend gender roles, but for the most part, penis = man = cis man. Most of the illustrative vignettes sound like they were provided from the point of view of opposite-sex couples, although I did see some gay and lesbian content as well. Speaking of which, there are some illustrative sexual fantasies described between chapters – these erotic short stories did nothing for me, but I am certain that is a personal thing. Your mileage with the written sexual fantasies will vary.
One thing I did not like about the book at all was the drawings. The illustrations are just terrible: The line art is shaky and near the end there’s an illustration of a guy receiving oral sex on the beach and one of his eyes is all like 0.- and it just looks weird. Technically speaking, Amazon isn’t supposed to sell pornography, (enforcement is another issue,) so I think the drawings maybe had to be below optimal in order to get the book past the censors.
So who might be interested in pursuing the pages of The Ultimate Guide to Fellatio? Who would gain the most benefit from reading a how-to on how to give or receive “Mind-blowing pleasure?”
Well for starters I’m actually becoming skeptical & jaded when it comes to any guide that promises such a claim. I know that book sellers gotta be able to move stuff off the shelves, but there’s so much human variation that it’s too hard to guarantee that anything can create that kind of sexual pleasure.
This would be a very good book for people who have not yet had any experience with oral sex, or who have had only limited exposure to it, yet who nonetheless have an interest in being the recipient or provider of such an act in the future. Because it covers such a wide berth of content, from Anatomy to X-rated films, (I couldn’t think of anything that starts with a Z – unzipping pants, maybe?) the book will provide plenty of information with which to brace yourself. I would suggest reading the book start-to-finish if you’re on the newer side. If you do not yet have a partner but expect to find one later, Blue makes some suggestions for practicing fellatio in a solo setting. (You won’t get the body language feedback but you’ll be under no pressure while tweaking your own techniques.)
One potential problem newbies may have with the book though, is that since it’s so detailed, it can seem overwhelming at times. As I was reading through some of the how-to suggestions, I found myself asking at points, “How is anyone supposed to remember all this?!” So if it’s too much to take in all at once, you may have to go back and skim parts of the text again later.
It would be an okay book for people who have some experience with fellatio and expect to continue participating in it, but do not yet consider themselves to be experts. If you are such a reader, then you can probably skip around to whatever parts you’re most interested in.
So for these two kinds of audience members, the book is most worth it.
I think the book would be less useful (and thus less worthwhile) for people who already have a lot of experience with oral sex. So if you think of yourself as “Advanced” in fellatio, (even theoretically!) then The Ultimate Guide might not be worth it. At that point, chances are you’ve already seen & heard most of what Violet Blue talks about. It’s still worth something; because it’s so dedicated to its topic, there may still be a few things you can pick up here and there… However, I think you’ll eventually pick up on those few things that you didn’t know about, by reading sexuality & sex education blogs, for free. Just hang around a few favorite blogs long enough (try some of the ones listed on my blogroll) and you’re bound to see the same subjects pop up, eventually.
For example, since I have read a lot of related sexuality material elsewhere, I found myself anxious to speed through the stuff that I already knew. I felt obligated to read everything for the purposes of this review but there was a lot of stuff I could have just passed over without a look back.
The Ultimate Guide to Fellatio may or may not be of use to people who do not expect to give or receieve fellatio in the near future. This is because if you have decided that it’s an act with no appeal to you, then the book may still provide you with insight into what’s on the minds of folks who do engage in it and why such folks will often defend it. But if you’ve already made up your mind that fellatio is off the table, then chances are no book will be able to change your mind and in some cases it will just be a waste of time. It could be irrelevant to you in this case.
I am not sure if this would be a good bet for sexual abuse survivors, because there is only a very brief mention of fellatio and past abuse.
So if price is a factor, then I think the $10 for the e-book version or ~$15 for the printed copy is worth the investment if you are new-to-medium in fellatio. If you feel that you’re advanced, then I think the $10 for an electronic copy is cost-effecient only if you are already heavily interested in sexuality books. Otherwise, if you know what you’re doing, then save your money and read some blogs instead. And if you know that fellatio isn’t going to happen then whether you would benefit from the book depends on your political or philosophical inclinations.
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: communication, disability, endometriosis, female sexual dysfunction, FSD, guest post, health, language, pain, sex, sexual dysfunction, sexual health
[Dear internet, we have a guest poster today! The following was written by brigid, who wrote me a moving e-mail a few days ago.]
Hi, my name is brigid and I asked K a few days ago if I could do a guest post for feminists with fsd. This is the first time that I have really spoke openly about my pain, ever. I mean it’s not like no one knows that there is something wrong. If the chants of frigid brigid that I dealt with since middle school are any indication a certain ex of mine was blatantly honest with the entirety of the boys locker room that there was something wrong.
So, what exactly is it that is “wrong” with me? My fsd is caused by a condition called endometriosis. Endometriosis is a condition which results in the tissue that lines the inside of one’s uterus to grow on the outside of the uterus, and the surrounding tissues. This can cause the tissues to become inflamed which can result in pain in the surrounding tissues, leading down into the vagina. I also have a condition called allen-master syndrome. This means that my uterus is hypermobile and will tilt at strange angles which creates problems for my cervix, further resulting in pain. So I am basically in pain all the time. It feels like someone is continually stabbing a hot poker into my uterus via my vagina.
Any and all kinds of sexual activity, even those that most people would say are not inherently sexual, result in increase of pain. Any kind of signal firing to my vulva and vagina causes the pain to increase. That means that things like kissing, cuddling, outercourse etc are all off limits to me. Each and every time I try any of those things I end up in agony which doesn’t go away for days and sometimes weeks on end. And don’t even think about masturbation and intercourse. I can’t even touch my vulva most days.
That brings me to the point of my post. A lot of support groups, both on and off the web do not want to recognize women with conditions such as endo as legitimate cases of fsd. We don’t have vulvodynia, vulvular vestibulitis, or vaginismus so we couldn’t possibly go through the same things as women with those conditions. I’m here to change that misconception. The term that K uses for this kind of thinking is the fsd hierarchy. I like that terminology. Because that’s basically what it is when other women with fsd say that their level of pain and suffering is more significant. No one person’s pain is more significant than any others. The levels of pain may be different. The things that one may be able to accomplish with treatment based on the individual and the condition at hand may be different, but we all have something in common. A problem which we can’t talk about. A problem which society tries to pretend doesn’t exist. A problem which for some of us consumes are lives and makes them hard to live. This is something we all have in common. Sexual activity is painful for us. That is something that should bring us together. Turn us into a united front. One which says that we will be treated with respect. One which demands research into ways to better manage our problems. One which supports each woman and encourages her to educate herself about these problems. One which encourages our partners to educate themselves about this. One which will allow all those affected to get an accurate diagnosis and a doctor who knows what they are doing instead of dismissing the pain as “something some women deal with”. I don’t think that that is too much to ask for. We should be striving to break down these barriers. We are all suffering from our problems with our sex lives. Some have it worse than others. Some choose to still have intercourse even though it is painful for them (I admit that I fall into the I have intercourse for more reasons than just it feels good camp) Some choose to be completely celibate, but regardless on your individual decisions, you still suffer from fsd. Our society tries to silence us. By playing the hierarchal game we are allowing them to get away with it. The only way that we as a whole are going to make things better for ourselves is if we talk about it, and encourage others to talk about it as well. By silencing other women who suffer from FSD just because it doesn’t fall under one individual’s narrow view of what fsd is and how it works, we are hurting every woman who needs help. We as a community need to share and embrace our differences. This will allow us to learn more about others and as a direct result about ourselves. So I encourage you today to reach out to another woman with a different type of fsd and talk to her. Share in a mutal discussion about the challenges of your conditions. I think you will be surprised to see how much overlap there really is between us all.