Compare and contrast

12/02/2010 at 9:16 pm | Posted in Uncategorized | Leave a comment
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My last post presented a review and critique of the feminist sexology text, A New View of Women’s Sexual Problems. It’s a different kind of review. The book was inspired by the efforts of the Working Group on the New View of Women’s Sexual Problems, a group of about a dozen North American women who came together to present an alternative view of sexual problems and dysfunctions, just in time for a  medical conference held about 10 years ago. A New View of Women’s Sexual Problems, the book, builds upon the original New View manifesto.

Today I’d like to present to you a different kind of feminist response to sexual dysfunction – a response from another woman who is intimately familiar with gender studies, feminism… and vaginismus.

As I noted in the New View book review post, I felt like some elements were missing from the essays – notably, it remains unclear to me whether any of the contributors to the original manifesto or the book actually know what it’s like to live with sexual dysfunction – to be torn between what you “Know” is the “right and proper” feminist response to sexual dysfunction vs. the daily grind of living with and responding to it, sometimes just managing. It’s possible that one or more of the contributors did have some kind of sexual dysfunction, and just didn’t disclose such status for whatever reason. But since I can’t know for sure, I still feel like I’m left on the outside of a circle of folks who are not me, yet who nonetheless decide my fate for me.

Alas, my time available for blogging is shrinking, and will continue to do so until some time in January! So instead of presenting another dissertation-length blog post, I’m just going show you an essay today and give some reasons as to why I liked it.

The essay is, A certain remoteness telling vaginismus, by Fulvia Dunham. I thoroughly enjoyed this essay. If you usually like what you see here on this blog, then I would strongly recommend that you read it. It’s one essay in the anthology Illness in the Academy, published by Purdue University (whom I would like to thank, along with Google Books, for making A certain remoteness in its entirety available to me as of today. I did have difficulty viewing it on my mobile device, however, and I am not certain if Google Books format can be picked up by all screen readers. Keep in mind, allocate your page previews carefully if you want to read the essay in full online.) According to Amazon, Illness in the Academy:

investigates the deep-seated, widespread belief among academics and medical professionals that lived experiences outside the workplace should not be sacrificed to the ideal of objectivity those academic and medical professions so highly value. The 47 selections in this collection illuminate how academics bring their intellectual and creative tools, skills, and perspectives to bear on experiences of illness. The selections cross genres as well as bridge disciplines and cultures.

Other essays in the book talk about life with chronic illnesses, conditions, and disabilities – to mention a few, some contributors have or are close to someone with diabetes, endometriosis, depression, autism, cancer.

And yet vaginismus – a sexual problem, a sexual dysfunction, a variation of normal, a medical condition, a gynecological disorder, a disability, a symptom of a relationship problem – what is it really? – is included right alongside these more readily-recognized health conditions – though certainly the conditions included have varying degrees of public awareness and social acceptance. The editor of the anthology, Dr. Kimberly R. Myers, did not excise the essay on vaginismus as too titillating due to its sexual nature or as irrelevant due to being a relationship problem. Here, it is unquestioningly given the same treatment as any other medical problem. Seeing vaginismus included in the same place as more readily recognized chronic conditions was a shock to me. And this book was published in 2007, so it’s ahead of the curve! I find myself asking if, because vaginismus was part of this collection, if that means there’s openness to the idea of looking at sexual dysfunction as disability even offline…

Clearly, there is a need to understand vaginismus as a matter of health:

Exchanges with family members were uncomfortable; people were usually tentative and shy, occasionally asking if I’d fixed “my little problem,” implying that it was a bad habit of aversion I had to correct rather than a problem or illness with which I needed help… I think the unspoken assumption in many of their minds was that if you can’t perform normally in sexual terms, you’re unfortunate – but not in need of a hand, as you would be if you had a recognizable illness (151).

All the emphases in the quotes are in the original.

The author of the essay in question talks about how she sought assistance from professionals trained in treating vaginismus, though she herself does not appear to be an expert herself – there’s no pH.D or M.D. or M.S.W. or other certification given next to her name. She’s a regular person, like me. Much of what Dunham writes about appears to have taken place while she herself was a student (which makes sense, given that the anthology is titled Illness in the Academy!)

What I like best about Dunham’s essay is that there’s no filter in A certain remoteness. Dunham was given the opportunity to speak in her own words. No one is presenting snippets of what she said in the greater context of some other theory. She’s just saying: What she did, what she went through, what she saw and heard, and what was on her mind when it happened.
I suppose right now, I’m creating a lens, an artificial filter, just by framing this post the way that I have chosen. But that’s what the link to the essay is for – you can see for yourself.
In contrast, in the New View book, short statements from women with sexual dysfunction were presented by professional women, as case studies in support of the New View manifesto. When someone says or does this, she really means that.

Because there’s no filter, there is a stream-of-consciousness, indicated by italics and bolds in the text, which weaves throughout A certain remoteness; usually flitting under a sea of text, always near the surface,… then *Boom!* it pops out for just an instant, and is gone… only to leap out again a few paragraphs later, a brief flash of uncensored turmoil over a carefully constructed treatsie.

But here and there we can catch a glimpse of it, Fulvia’s free stream-of-consciousness,  jumping out of the formal, the factual, and the philosophical:

and if your body is closed, if you can’t let anyone in, if you can’t talk about it easily because no one knows what you’re talking about, if you’re obligated to remain closeted because people often forget what you’ve told them, then you’re simply repressed – closed – out of the loop – out of circulation – unable to come out because you can’t let anyone in, because there’s no language with which to come out, and because nobody cares (149)

(As a side note, some of my unedited draft posts look like this before going live!)

Another interesting feature of Fulvia’s essay is the way she addresses language. In an eerie coincidence, frequent commenter Flora and sometimes contributor left a note here last night addressing how Dr. Tiefer in particular treats language – it’s a very important tool. It has power. Words mean things. But not everyone thinks that way, and to emphasize language over other modes of communication can create new, unique hurdles.
And sometimes, words have limits. Sometimes, language isn’t as powerful as it should be – because there are no words to express what you are really feeling:

Then they ask me about the man with whom I have parted ways two months before, after having been with him for two years. I say that things are fine; everything’s amicable enough, and he usually calls me every couple of weeks from Los Angeles. when he told me, it was new year’s eve, and then waking up in the middle of the night just after, him near me, trying to tell him that he was all over for me, that i’d never have intimacy with anyone now, because no one would have the patience, that this was the last dance, impossible, that he was relegating me to life among those who remain alone – trying to explain – the words were broken – that although i wasn’t sure i wanted children, i wanted the possibility I say that we’re exchanging emails and phone calls fairly often. and it would never be possible again and doomed and no access cut off a certain remoteness – his looking at his watch to see if it was midnight yet They have to catch me as I begin to fall backward off the chair. (153)

Dunham explicitly says, “The words were broken.” Fulvia was trying so hard to articulate everything she was feeling at the time of her breakup. But she just didn’t have the words available. How do you talk about vaginismus when you’re not even supposed to talk about vaginas, about pain, about sex? So you grope around looking for words, looking for something that comes close to expressing what’s on your mind in a way that another person can understand but the language that’s available doesn’t match what you want to say, so you wind up saying something that maybe has a totally different meaning. Maybe what really conveys the emotion is a scream, or a work of art, or a song, or something that does not yet exist.

Dunham herself may even be familiar with the New View’s work:

Given my later training in gender studies, it became tempting to try to believe that this wasn’t a “problem” or “dysfunction:” it was simply a “difference.” But given the imperative we receive in our culture to express ourselves as sexual beings, the messages we’re sent that suggest we’re incomplete, uptight, wound-up, or repressed if we can’t or don’t, it doesn’t feel like merely a difference; it feels like a defecit. It also doesn’t feel like just a difference when the desire is there, but the means of expression are not. It feels like an insurmountable obstacle. (151)

Being familiar with gender studies and possibly with the New View’s work in combating the medicalization of sex, Dunham struggles with questions about what that means for her, as someone living with vaginismus; as someone who needed and sought medical assistance to address it:

am I succumbing to compulsory heterosexuality, the heterosexual imperative, the pressure to become more valid through an ability to participate legibly in the sexual economy? Their sign says “No passing zone.” Rather than seeking to overcome this, perhaps I should use this with which I have been fated to disrupt the usual equation between “intimacy” and “penetration.” Should I question the usual assumptions about what constitutes sexual success and fulfillment? – challenge the commonplace equation between sexual fulfillment and fulfillment? (154)

She knows. She knows she knows. You know? Dunham is familiar with gender studies and feminism. She’s heard it all before. The critiques of sexual dysfunction from a social construction perspective are there. But she also knows that there’s something more going on… something that even feminist-informed social construction sometimes cannot breach:

Is it wrong to want my vagina to open? (154).

This simple question. This one, simple question… is the same one I find myself asking after reading through books like Sex is Not a Natural Act and A New View of Women’s Sexual Problems. Am I doing something wrong? Am I now obligated to expand my sexual horizons rather than having that available as an option? Is it okay for me to get medical help for vulvodynia & vaginismus, and whatever else I may encounter in the future? In so doing, am I medicalizing sex and making it harder for TAB women to enjoy sex as they are? Or do I have the one and only free pass to sexual medicine, because dyspaerunia is the only valid and important sexual dysfunction? But if that’s the only valid sexual dysfunction, then what about my friends? Dunham seems to understand what it feels like, to be stuck in the middle.

And open her vagina did. Dunham continued to seek help addressing her vaginismus, and eventually, after 15 years, she did find satisfactory resolution through physical therapy in Montreal, Canada. She no longer needs to talk about vaginsmus – “Perhaps I am at the point where I can – and even should – put all this to rest” (154). But Dunham still remembers the whole experience, vividly – and much like Susanna Kaysen, it has left her sexual identity fundamentally changed… Dunham, in the end, came out of the experience, as Q for Questioning, or possibly even Q for Queer, inspired by a definition proposed by Eve Sedgwick. Dunham now has the option to engage in heterosexual PIV intercourse, if she so chooses… will she so choose? Even if she does not exercise this option, Dunham does not express resentment towards the doctors who helped her reach this point; she has nothing but gratitude towards them. I suppose the social system of medicine available in Canada helps – in the USA, she may have faced a different set of challenges with the cost treatment and insurance.

There’s a lot more to the essay I didn’t address here; I just picked a few parts that resonated with me. Reading A certain remoteness alongside A New View presented a refreshing contrast, and I would like to see more essays and creative works like it.

Book review – The Camera My Mother Gave Me

08/31/2010 at 6:29 pm | Posted in Uncategorized | 2 Comments
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[Trigger warning for rape]

The Camera My Mother Gave Me is both one of the easiest and hardest books I have ever read.

Years ago, shortly before I received a tentative diagnosis of vulvodynia by my main gynecologist, I started looking for support and information about what causes vulvar pain. The Camera My Mother Gave Me is one of the earliest books I read about the topic. At the time, it was one of a very few books available that talked about vulvodynia with any amount of detail. Most of my other sources were scientific & peer reviewed medical journal articles or anecdotes from the internet. What sets The Camera My Mother Gave Me (henceforth I shall refer to it as TCMMGM) apart to this day is that unlike informational resources that talk about treatments, it is a memoir. It’s a first-hand personal recollection of author Susanna Kaysen’s life with vulvodynia over about two years.

Yes, you read that right, the author is Susanna Kaysen – this is the same author made famous for her previous memoir, Girl, Interrupted, which was made famous by Hollywood – though I understand the film distorted the facts in the name of artistic license. However, I have not read Girl, Interrupted and will not be talking about that today. Whether Kaysen’s experience with psychiatry in the 1960s has anything to do with her vulvodynia later in life, I cannot say.

So, TCMMGM is both an easy read and a hard read for me. How is this contradiction possible?

It’s easy because it’s short. It’s only about 150 pages with paragraphs double spaced. If you’re interested in reading it, it probably won’t take more than a few hours to finish; maybe a day or two tops. Kaysen uses everyday language instead of heavy academic jargon, so you don’t necessarily need to be a doctor or be familiar with vulvodynia in order to follow along.

But it’s hard because every time I read it, for all the progress I’ve made and improvements I’ve seen over the years, I am instantly transported right back to square one – that daunting, hopeless, barren place where the walls of pain obscure every available path. It’s hard because when I read it, I remember everything… the questions unanswered, the ignorant doctors, the uncertainty …the pain. I’m in my early 20s again and I don’t know what’s going to happen to me.

Another reason this book is so hard for me because no one understands this book unless they have vulvodynia. Perhaps I’m not giving folks enough credit. Perhaps that’s an exaggeration… but not by much. TCMMGM has received mixed reviews, many of them negative. The negative reviews usually contain some variation of gross-out due to TMI or frustration with Kaysen’s lack of progress in treating her pain medically. It’s TMI and gross because vaginas and vulvas are generally considered vulgar and gross – at least outside of feminist circles – sometimes even within feminist circles, because don’t talk about vaginas too much or else you reduce yourself to a big walking vagina – and thus it’s a shock to read such frank language and descriptions about the vagina. Frightening, too, to have to think about an area that’s supposed to be capable pleasure feeling instead only pain. If readers are frustrated with Kaysen’s lack of progress, that may be because Kaysen herself was frustrated and was deliberately trying to convey that feeling – trying treatments she felt comfortable with, avoiding the ones that she didn’t want but that were nonetheless pushed upon her over and over again. When she opened up about her vagina and all its problems, Kaysen also left herself open to invasive personal questions, “Why didn’t she do this, why didn’t she try that.” If the book feels unresolved at the end, that’s probably because vulvodynia is itself a chronic problem, often with no clear resolution. There are still loose ends by the time the book ends, because in Kaysen’s real life the struggle with vulvodynia was ongoing.

So what’s the book about?

The briefest answer is to say that it’s about Kaysen’s vagina. One day, mysteriously, “Something went wrong with it” (3.) Everything else follows over about a two-year period.

A more comprehensive answer is to say it’s about Kaysen’s experiences during a time when she had to re-evaluate her relationship and sexuality as she navigated the gauntlet of modern medicine in search of answers for her debilitating vulvovaginal pain.

Kaysen began experiencing vaginal pain that “Felt as if somebody had put a cheese grater in it and scraped” (3.) The reasons for this pain are never made 100% clear. We learn that Kaysen had a bartholin’s cyst surgically drained some 20 years earlier, and the pain felt intense at the surgical site – but the pain radiated to other areas of her vulva as well. She was approaching the age at which many women enter menopause (though I could not tell what her age was when the pain started.) Her gynecologist initially misdiagnosed Kaysen with a run-of-the-mill infection and prescribed some treatments that probably didn’t do any help. At some points, Kaysen explores the possibility of psychosomatic causes.

This pain interfered with her everyday activities like “Wearing pants” (8), “Taking a bath” and “Too much driving – it hates that” (146.) She maintains a pain diary, measured on a scale of 0-5, with her pain frequently hovering around a 2 and sometimes spiking above 5. She had good days and bad days.

The pain interfered with her sex life, to the point where her sex life and her relationship with her own body fundamentally changed. Very early on, Kaysen tells her gynecolgist,“Listen, I said, everything’s getting worse. I’m really having trouble with sex. My vagina hurts all the time now. If I have sex it hurts more, but it never doesn’t hurt” (9). Unfortunately an expanded definition of “Sex” did not adequately address Kaysen’s problems:

“I tried a lubricant named Astroglide that was more glue than glide. My boyfriend and I tried all sorts of varities of sexual activity: very quickly, so it wouldn’t have time to hurt; without moving, just in there; only fingers in there; nothing at all in there, only outside. Whatever we did, it hurt” (10).

She was not even able to enjoy arousal in and of itself, because “Just getting aroused hurts” (55).

When her pain first manifested, Kaysen visited multiple doctors specializing in different fields. She lived in Boston at the time, which is home to some real-life vulvovaginal specialists. She visited her gynecologist, an alternative medicine practitioner, an internist, a vulvovaginal specialist, and a physical therapist. Some of these doctors pass her off to other doctors – notably, when her primary gynecologist was stumped, Kaysen felt that he was “Washing his hands of me! After twenty years” (9). She was tentatively diagnosed with vulvar vestibulitis and tried multiple treatments – conventional western style and alternative – but none of them were right for her. Kaysen was acutely sensitive to side effects, and in some cases the side effects just made things worse. Even physical therapy, a treatment that I had very good luck with, only set her back farther. (Having a crummy physical therapist who ignored her wishes probably didn’t help.) Other treatments, notably surgery, she did not want to try, though the doctors and her boyfriend pushed and pushed.

The doctors left Kaysen with a lot of unanswered questions about vulvar pain…

With her gynecologist:

So what is it? I asked him.
I don’t know, he said

But what is it? I asked him. What’s wrong with me?
I don’t know, he said.
(9).

With the internist:

But why does it hurt all the time? I asked. Why does it hurt when I’m not having sex? When I’m sitting on the sofa?
I don’t know, said Doctor Matthew
(21).

With the vulvar specialist:

Why did this happen? I asked him.
Eh, he said. He shrugged.
What is it, anyhow?
Eh, he said. He returned to the stool and resumed his Q-tip (28).

What’s the matter with me?
You have a sore spot, he said
(30).

WELL THANK YOU, CAPTAIN OBVIOUS!!! A sore spot! Of course! Why didn’t Kaysen think of that?! That explains everything!!!

*headdesk*

It goes on like that in some fashion over the whole book. Just as it continues to go on day after day in real life for still all too many women.

[Trigger warning for rape]


Kaysen’s nameless boyfriend was not sympathetic to her situation or open minded about the kind of sex he wanted. For two years prior to the events described in TCMMGM, Kaysen and her boyfriend had enjoyed a sexual relationship. Her partner had a strong interest in sex - “It was one of the things I had loved most about him” (95), though they never say “I love you” to each other. But when sex hurt, Kaysen began to lose interest in sex. While they stayed together for the first year that she looked for treatment, the boyfriend nagged and coerced Kaysen to have sex with him – even if it meant she was performing against her will. Readers of this blog would probably recognize what Kaysen describes as rape. She didn’t say no, she acquiesced under pressure, but certainly she stopped giving any kind of enthusiastic consent. She spends days after sexual activity coping with the painful after effects. Kaysen herself never uses the word rape to describe what she went through with her boyfriend, even when it caused her to disassociate during the act and left her in physical pain for days afterward. When asked by a biofeedback specialist if she had ever been sexually assaulted, she answers “No,” but when the question is rephrased to “Have you ever had sexual relations against your will,” Kaysen says “Yes” (82). When she recounts the last straw to her friend, Kaysen questions herself, her boyfriend’s actions, her own fear at the time, and what actually happened.

[/TW]

Even after evicting her boyfriend, Kaysen continues to feel pain long-term. It wears her down over an extended period of time. “Low-grade pain is debilitating in a subtle way” (121.) Eventually she loses interest in sex, and this is a painful experience for her, but in a different way. When Kaysen talks about sex and eros, it’s clear to me that prior to these events, she really did enjoy sexuality in her life. For her, it was a source of unpredictability. At one point, after throwing her boyfriend out of the house and struggling to rediscover pleasure from what once felt only plain, she tells a friend, “When eros goes away, life gets dull. It’s as if I’m colorblind. The world is gray” (125.) She eventually decides that the best course of treatment is to stop treatment. Eventually she makes a limited, partial recovery… But by then her relationship with her vagina, vulva and her own sexuality are fundamentally changed. Maybe forever.

Kaysen’s language may be plain and easy to understand, but it’s not without criticism. She uses frequently the word “Vagina” even though a more accurate word is “vulva.” Or maybe it is accurate for her to describe her pain as vaginal, since with vulvodynia the pain can radiate and spread beyond the vulva. In practice, when the pain feels like it’s everywhere, it can be very hard to pinpoint. One social construction argument against female sexual dysfunction as a valid diagnosis is that women with sexual problems may not be educated enough to understand their own anatomy; however Kaysen demonstrates that she is aware of her own anatomical structures and function.

Overall though, I would hope that readers accept Kaysen’s idiosyncrasies and simplified language. She uses other inaccurate terms, most likely as deliberately as she chooses to forgo with quotation marks when recalling conversations. She refers to her doctors as the “Vulvologist” and the “Biofeedbackologist” instead of as “The vulvar specialist” and “the physical therapist.” But when you’re encountering these specialists for the first time, perhaps not knowing such fields even existed before, what else are you supposed to call them??? The title of the book itself is an error. The title is based on Kaysen’s memory of a scene in a movie, with some artistic license exercised. (According to this interview with Kaysen about TCMMGM, technically the title of the book should be The Camera My Father Gave Me.) She receives materials from the “National Vulvodynia and Vestibulitis Association” instead of National Vulvodynia Association. And so on…

But this is her story in her words. I hope we can forgive her for taking liberties with some of the language – though it does have some disableist moments that are questionable and perhaps not so flexible.

I don’t know if Kaysen ever found relief for her pain in the years since TCMMGM came out, though it seems unlikely. Around 2003, the following was written about her on Salon.com:

Though she lives in the Boston area, the doctor capital of the world, Kaysen never found a workable medical treatment. Today, Kaysen hasn’t so much lost or won her battle; rather, she’s signed a treaty, with massive concessions. “Celibacy is a great cure!” she said wryly in a recent phone conversation. “I wasn’t interested in having sex again. The only thing I was interested in was not having pain. Pain eclipses desire.”

So who might be interested in reading TCMMGM? Who might benefit from exposure to such a taboo subject and who should approach the book with caution?

If the reviews online are any indication, many readers will be disappointed and frustrated with the book, but a few will strongly emphasize with what Kaysen went through. I am one of those people, and would like to see more people read and attempt to understand Kaysen’s situation. The frustration that so many reviewers are left with may be exactly what readers most need to feel, to better understand the frustration that still too many patients with vulvodynia have to deal with when running the gauntlet of modern medicine in search of adequate treatment.
The book is a memoir of one woman’s experiences with what is probably vulvodynia, and therefore it should not be taken as an advice or how-to book. This is all stuff that happened to Kaysen. It’s not necessarily going to happen to you. Some readers with a history of vulvar pain may find the book depressing because at so many points, things appear hopeless. Others take comfort knowing that they are not alone. It’s been a few years since the TCMMGM came out too, so there have been some advances in treatment since Kaysen conducted her own research and treatments. Your mileage may vary.
TCMMGM is short and small, but it’s not light fare. Although it has moments of dark self-deprecating humor, it’s not something to read if you want to feel good (except perhaps through schadenfreude.) It’s kind of a downer, to be honest. Because Kaysen describes a rape and post-rape scene with frank language, the book may be triggering to those with a history of sexual assault.
TCMMGM is available online from several retailers and it is available in E-Book format for Kindle. If you’re still interested after reading all this, then may I suggest that you make a purchase through the NVA’s book list, since they have a referral program set up for financial support.

As with all reviews conducted at Feminists with Female Sexual Dysfunction so far, I had to pay for TCMMGM with my own money, and I receive no compensation for posting a review of it.

Vaginismus and biofeedback on Dr. Oz

03/15/2010 at 6:06 pm | Posted in Uncategorized | 7 Comments
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What this? Dyspareunia appearing on television twice in three months? On the same show? I think we’re on a roll here, people. Or at least Dr. Oz is. Well sort of, anyway.

Sometime in March 2010, the television show Dr. Oz aired a short segment on vaginismus, and on March 8, the segment was added to the Dr. Oz website. Click the link to see for yourself. (No transcript available @ this time.)

Vaginismus is condition in which the pelvic floor muscles, including the muscles in and around the vagina, tense up. This tension can be occasionally uncomfortable in and of itself if you’re aware of it as I am, but more frequently, it can cause pain if you try to insert an object into the vagina while the muscles are tensed up. That means that it can make PIV sexual intercourse painful, or prevent it altogether. The pain & prevention of certain acts involving the vagina isn’t limited to hetero sex though – you may have difficulty with pelvic exams at the gynecologist’s and with using insertible menstrual products like tampons and cups.

Unlike a few months ago when Dr. Oz did vulvodynia, this time he did not have a representative from a vaginsimus awareness organization on the show. Perhaps this is because there is no such nationally recognized vaginismus organization (that I’m aware of,) as there is with the National Vulvodynia Association. There are patient-led organizations, treatment clinics, support groups, and doctors prepared to address vaginismus, yes. But for some reason Dr. Oz did not have anyone from one of these groups on the show to talk about it. Instead, he called a random audience member, Ronnie, onto the stage.

I think it is no coincidence that on this episode, without the direction of someone experienced in dealing with vaginismus, it was treated more flippantly than vulvodynia was a few months ago. Vaginismus was compared to panic attacks, localized to the pelvic floor.

For some reason, this comparison generated a lot of laughs in the audience.

I don’t understand that comparison. While I struggle with general anxiety, I have never experienced  a bona fide panic attack, so I cannot compare the two. My understanding is that panic attacks are acute episodes of intense fear and terrifying sensations. For me, the pelvic floor tension is a chronic problem, though it may be made worse in anticipation of penetrative activity. I’ve heard comparisons of vaginismus to a blink reflex, but this is the first time I’ve heard it compared to a panic attack. At one point, Dr. Oz compared vaginismus to a back spasm – this makes more sense to me intuitively, but a back spasm and a panic attack are not the same thing.

What really bothered me about comparing vaginismus to a panic attack though, was Dr. Oz’s & the audience’s reactions – laughter. What part of a panic attack is funny? What part of vaginismus is amusing? Sex and pelvic floor problems must be a laugh riot to anyone who’s never experienced them, har-de-har-har. This laugher could have been prevented or addressed by Dr. Oz, but if he said anything to the audience about the seriousness of the situation for people who are bothered by vaginismus, (and I don’t have any reason to believe that he did,) that part didn’t make it to air.

Dr. Oz showed Ronnie and the audience a computer-generated animation of what happens during a pelvic floor spasm. The muscles of the pelvic floor around the vagina and rectum draw in, making entry difficult, painful or impossible.

Dr. Oz focused briefly talked about possible causes for vaginismus, starting with physical, tangible causes for vaginismus – notably infections and menopause. I’ve experienced pelvic tension from infections – stress and physical discomfort. He also briefly noted “Psychological causes,” but did not detail what some of these causes may be. (I’m uneasy about framing vaginismus as a purely psychological problem, as it manifests & can be treated physically. Nonetheless psychosexual counseling may be appropriate for some women with vaginismus. I’ll pass on that though…) This few-second crash course in causes of vaginismus was disappointing. More detailed lists of possible causes (the experience will vary from person to person,) is available on several websites, such as the list on vaginismus.com or the Vaginismus Awareness Network.

Dr. Oz then moved on to possible treatments for vaginismus – or rather, only one treatment, biofeedback. On the one hand, I was glad to see biofeedback for vaginismus covered in great detail, as I’ve had a positive experience using it, and it’s non-invasive. It is also an option for treating vulvodynia, on the caveat that not all vulvodynia patients benefit from it. But on the other hand, that only one treatment was covered in detail is another drawback, as he did not talk about other therapies available, such as at-home dilator use, counseling, physical therapy (which can be combined with biofeedback,) botox, or just leaving it alone and not seeking treatment. Biofeedback is not readily available to everyone who may be interested in it; trained professionals prepared to show patients how to use it may not be local, and even when it is an option, there’s a risk that it can be prohibitively expensive – the equipment setup shown on the Dr. Oz show isn’t cheap!

Dr. Oz showed Ronnie an insertible biofeedback sensor, to be used vaginally. Dr. Oz pulled Ronnie over to an examining table, although this being a mainstream daytime TV show, he did not demonstrate using the probe on Ronnie. Instead, as a stand-in, Dr. Oz proceed to demonstrate how to use a biofeedback device using external sensors intead, applied to Ronnie’s arms. The camera panned over to a laptop with biofeedback software running on the screen and…

…Wait a second… that looks familiar… wait… Huh?!

Woah!

Wait a second – I know that software! Wait, that white box that the wires are attached to – I know that thing! I think that’s the same setup we used at my physical therapist’s office. I recognize the interface. I believe that this biofeedback device is from the Prometheus Group. (It’s probably way out of price range for patients, so if you’re thinking about getting that set up, you’ll probably be better off looking for an alternative. I think that setup is really designed for clinical settings rather than at-home use.)

Oooh… I know exactly what’s going on there! Allow me to explain (TMI alert!!!):

Essentially, biofeedback shows you when your muscles are tensed and when they’re relaxed. My physical therapist taught me how to kegel efficently using biofeedback, although Dr. Oz never uses the word “Kegel” on the show. One of my problems was, since my pelvic floor was basically always in a state of tension, I couldn’t relax it on my on at first. I didn’t know what that felt like. The graphs from the biofeedback software showed me the difference between tense and relax states. I was pretty bad when I first came in – a tense and relax state had almost no difference in graph height. Eventually, I got better at it, and learned how to spend more time in a relaxed state, so the peaks and troughs displayed on the graph became bigger. Keeping the pelvic floor relaxed is still a struggle for me, since I must have spent years in spasm or near-spasm, but it’s better than it was.

If you’re apprehensive about inserting something into your vagina, especially in a clinical setting, don’t worry – You don’t necessarily need to insert a vaginal sensor in order to practice pelvic floor biofeedback. As an alternative, there are external sensors that stick to the skin instead. I have never used the insertible probe, I have always used external sensors for pelvic floor biofeedback. These external sensors can be applied to muscles around (not inside) the vagina, and with proper training the external sensors can be just as effective as the probe. External sticky pads are used once and then thrown away.  I felt absolutely no pain or discomfort from the external sensors. Wires connect the disposable sticky probes from you, to the white box, to the laptop.

Possible drawbacks to the external sensors are: They can be tricky to apply to the right spots, aren’t super-sticky (may fall off after awhile, but you’ll probably be done by the time that happens anyway,) and they don’t work when wet. (That means if you dilate while the external sensors are attached, be careful to keep them dry – don’t let lubricant get on them.) Nonetheless, they do work, and they do their job well.

Whether you go with the insertible probe or external sticky pads, the sensors measure muscle tension, I seem to recall the units of measure were in microvolts. There is a moving graph on the computer monitor. It will refresh every few seconds. When  your muscles tense and relax, the lines on the graph react in kind – more tension, the line on the graph rises. Relax, and the line on the graph falls. Eventually you learn the connection between the stuff on the computer screen, and what you’re feeling, so you learn how to control those muscles.

This particular software shown on the Dr. Oz program also has an audio feature. Once every few seconds (your PT can program the interval,) a voice will say “Work,” and you’re supposed to tense the muscles of interest on purpose. When the voice says “Rest” a few seconds later, you’re supposed to relax as much as you can. The graph will tell you if you’re on the right track.

The software on the show also has a save feature, so you can monitor your progress over time.

“Why are there two graphs?” For pelvic floor biofeedback, most of the sensors were attached to the muscles around my vagina, and one sensor was attached to my abdomen. So one graph measures your pelvic floor tension, one graph measure the abdominal tension. This is because when pelvic floor patients first learn how to tense & relax those pelvic muscles, they may be incorporating the abdomen muscles more than necessary. You don’t necessarily need to have both graphs on at the same time though.

I may be making this all sound more complicated than it actually is. When you’re actually having it done it makes sense, at least, after awhile, and so long as your therapist is well-trained.

At the conclusion of the biofeedback demonstration, Dr. Oz briefly mentioned that it can be used to learn how to relax in general. He also advised that vaginismic patients ask their OB-GYN about biofeedback. It’s not bad advice but… unfortunately in practice, for some reason, there are still gynecologists who do not know what vaginismus is or how it can be treated. There are still gynecologists who frame it as “All in your head, have a glass of wine and relax.” If you think biofeedback may be right for you, and your current gyn refuses to or is unable to help you, you may need to seek out another doctor, or you may need to seek out a different treatment, if you want one at all.

Overall, while the segment did biofeedback justice, I would have preferred to see vaginismus in general given more detailed coverage, or, to have seen the title for the segment changed from “Vaginal panic attacks” to “Treating vaginismus with biofeedback,” which would have been the more accurate title. The audience laughter was inappropriate and insensitive.

This coverage of sexual pain leaves much room for improvement.

The ugly things people say about FSD

12/08/2009 at 9:11 pm | Posted in Uncategorized | 10 Comments
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Big Honking Warning: The following is a collection of some of the most hurtful & harmful comments responding to articles & blog posts about female sexual dysfunction I have found within the last few weeks. Nothing here is supportive or helpful, and so if you personally struggle with any type of sexual problem, I suggest bypassing this post entirely.

I have already written at length about some of the troubling claims & statements I find when I read news articles & blog posts about female sexual dysfunction. Often when the articles are published online (which is where I usually find them,) there will be a section at the end for logged in users & guests to post comments about the article in question & get into new discussions.

Very often, comment sections are land mines. This is not just a phenomenon limited to discussions about sexual dysfunction, of course. If you have had internet access for any length of time, chances are you already know what I’m talking about. You might read a perfectly well-reasoned and sensitively worded article (or not) about a political event, a movie, a local celebrity, a medical condition, etc. Finally there will be a comments section, a place where interested parties can theoretically share their own thoughts. Different forums have different comment moderation policies, ranging from zero moderation to (theoretically) safe space, with variation inbetween.

Sometimes there will be something of value to take away from the comments section, especially if an article is intended to be supportive. Someone with personal experience in the matter at hand may point out flaws in an author’s language, or offer resources to more information on the topic at hand. Other times, comments are less than helpful. The comments that stand out the most  though, are often the worst, most hurful ones. They are the unavoidable, spotted-too-late Ice Bergs (“Right ahead!”) floating among a sea of free speech.

I have bumped into several of these Ice Bergs, which scrape along my armor, and will likely continue to bump into them, although not willingly and certainly not on purpose. I just kind of find these things.

When it comes to counter-productive comments about FSD, it is my personal belief that attitudes which deny the existence of FSD and which contribute to a mystique about women’s sexual health foster this type of egregious commentary… and of course, at least a little bit of misogyny.

My own comments come after each quote.

As a man who knows some things about women, (I read jezebel!) I can say with 100% certainty that the cause of FSD if such a thing exists, is almost always the incompetence or disinterest of the male partner. [He reads Jezebel, and Jezebel is representative of women, therefore he knows about women! Actually no, Jezebel does not represent me, so you know nothing about this woman. According to this guy, FSD (which probably isn't even real,) is all the male partner's fault, because obviously he isn't "Doin' it right." This also means that singles & lesbians never need to worry about FSD, because they have no male partner.]

“Listless Vagina Syndrome” =”Unskilled BedPartneritis” and/or
“Excess Housework Disorder”
[Who is the Inflamed Bed Partner? (The -itis prefix indicates inflammation.) Is it the FSD patient herself, or her partner? Well as a matter of fact I did have inflammation in my vulvar vestibule, so I guess that in and of itself makes me a bad Bed Partner. According to this comment, the proper treatment was to do less household chores.]

My vagina is listless. She just sits around the house all day long in her pajamas, listening to the Smiths and drinking peach schnapps straight from the bottle. It’s kind of disturbing, to tell the truth. [Playing into Harding's made-up term "Listless vagina syndrome," which must be the exact polar opposite of what restless genital syndrome really is, haha isn't that funny. I didn't think it was funny.]

Maybe this isn’t the ladies’ fault. Maybe it’s dudes’ fault for not being sexy enough. [This comment reflects heteronormativity, encourages body image insecurity by the partner, and is clear partner-blaming. Would you ever say something like to the partner of a cis male experiencing erectile dysfunction? "Maybe he could get it up if his sex partner was hotter." That would not go over well if used on me...]

I can “lick” this disease;-) [Oral sex from this person cures all FSD, which is appearantly now a contagious "Disease" rather than a "syndrome" or "disorder." To this commenter's credit though, the author of the article linked to here also called FSD a "Disease."]

Women who can’t always have vaginal orgasms keep trying as hard and as fast as they possibly can. This gives the man a 99% chance of finishing first, which in Darwinian terms is optimal for procreation. It’s not personal. It’s not sexist. It’s genetic. 100,000 generations of your ancestors got it right. A male orgasm is a score for a potential baby. A female orgasm is just a teaser to keep the woman constantly interested. [Evolutionary psychology to justify general assumptions & sexism (yes it is.) Also, this person somehow knows exactly how all 100,000 generations have had sex - the "Right" way, at that, so by extension there must also be a "wrong" way I wonder where this commenter gets that 99% statistic of orgasming first? Wait, actually now that I think about it - what does ejaculation have to do with FSD anyway? What we were talking about again?]

I think there would be no problem with women’s desire if they were sure they or their partner were sterile. Solve this problem for people and you will never want for wealth. [Uh I think this commenter was saying something about contraception then tied it back into desire somehow? I have no idea what the "Problem" referred to here is, fertility? Infertility? This also ignores desire or ability to respond sexually which may change as an individual ages or takes medication that contributes to low libido.]

If women never ate wedding cake there would be no need for Viagra for women [Sorry, can't figure out how to link to this exact comment; it's the second one down as of 12/7/09. I can't figure out if this commenter is referring to women who eat cake at their own wedding, at another person's wedding, or if it's just yet another fat-phobic comment in general.]

What people are saying about vulvodynia specifically (NOBODY WITH VULVODYNIA READ THIS PART):

So you can’t fulfill your prime genetic directive? Be thankful. There are enough human beings on this planet. There are also enough sexual activities to totally bliss you out, even if you don’t choose intercourse. [Human population growth means some of us don't get to have the sex we want even if we don't want kids. Also, forgets that vulvodynia can leak out into areas besides sex and childbirth.]

Sorry for your pain, an shit….but why is this “News”?  …what’s the precise percentage of the world’s population who have to deal with this?….compared to rampant unchecked political corruption, genocide, slave labour, the concerted and systematic rip-off of the middle-class by the monied overlords, the systematic destruction, and abridgement of civil liberties, Two fucking limited Mid-Eastern “World Wars”,…etc., etc., etc.!
WHO FUCKING CARES ABOUT SORE PUSSIES!!!???
[Obvious troll, obvious misogyny, "Look over there!" distraction technique to minimize the real pain that some women go through. Why even comment at all?]

i disagree with the article the doctors are just out to get money you dont need to go and see them it will go away all on its own. So dont be scammed by them i wasnt and i am still going strong i had that pain but i started eating healthy and washing down there keeping that area clean that is the main reason that most women get diseases is because they dont cleanse themselves down there. So here is a lesson for all keep it clean and eat healthy and you wont have any problems. That is how i beat the pain no doctor is going to stick something up me that has been who knows where! [Where do I even begin?! This could be another troll. There are women with vulvodynia who have it for decades, so there's a very good chance that it will not go away on its own without treatment. Vulvodynia is not a "disease," it's more like a syndrome - a collection of overlapping symptoms, and it's not contagious. Overzealous cleaning (ex. with soap in & around the vaginal area) can throw the pH balance off & just make infections worse. I certainly don't have any food triggers and even those who do eat very healthy can still struggle with vulvar pain. Vulvodynia sometimes arises as a result of injury as well, so to say "Eat right and bathe" forgets about injuries & nerve damage. Finally, the last line seems to advice against ob-gyn visits in general. The speculuum used at an appointment may have been inside of vaginas, but it will be sterile.]

What people are saying about vaginismus: (SKIP THIS PART IF YOU HAVE VAGINISMUS):

having a painful first experience is understandable. not being able to get it in….well that implies either a physical deformity or the 2 partners being complete idiots…
2 virgins usually have awkward or bad sex, but this is ridiculous….false question or really stupid person. or go to the doctor immediately cause something’s majorly wrong!
[This person has never heard of vaginsmus or chronic pelvic floor tension, therefore, vaginismus & pelvic floor dysfunction do not exist. Except not really.]

One last interesting note relates to what is NOT being said in the comments section of some articles, or rather, what is censored.

A few months ago, 20/20 ran a television special covering vulvovaginal pain. The actual condition being discussed was “Vulvodynia,” but for some reason that word was never spoken aloud during the program. A supplement article posted at ABC’s website allowed comments. Or, didn’t allow comments, as the case may be. If you will click here to go to a discussion page and glance through the comments section, you will find many words censored out, replaced by “####.” Three or four # signs replaced use of the word “Vagina” and “vulva” in some instances. This is very … contradictory, for a news article that’s about vulvovaginal pain. Why would you censor the word “Vagina?”

Seriously, how is this helping anyone?

I don’t know why I make myself slog through these comments. I think I need to step away from the computer for awhile and not slog for a few days. It is draining.

Buried amongst the crap piles, I do often see positive, supportive, and even helpful comments attached to articles. The problem is that the only way to reach them, is encounter destructive comments like these.

Talking about FSD: how not to (part 2)

11/24/2009 at 7:08 pm | Posted in Uncategorized | 4 Comments
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A few weeks ago, The Nation posted an article about female sexual dysfunction, written by Joann Wypijewski, titled Sexual Healing. Rachel of Our Bodies Our Blog covered it with a link and some commentary. I saw several 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 yet.

How can I run out of steam, when authors, interviewers, doctors, therapists, and yes even feminists, keep on cranking out & covering new material about FSD, yet continue to make some serious mistakes when doing so? Wypijewski’s article has been joined by another in its well-intentioned but short-sighted spirit - “Restless Vagina Syndrome”: Big Pharma’s Newest Fake Disease, by Terry Allen.

What a funny title for an article about female sexual dysfunction, or at least Kate Harding over at Jezebel and the eponymous Kate Harding’s Shapely Prose blog found the title giggle-inducing and “Brilliant.” I’m sure she is not alone in her amusement – After all, Restless Vagina Syndrome – it’s like Restless Leg Syndrome (Is RLS inherently funny?) except this time it takes place inside your vagina. At first glance, without any further information, the term sounds like it must be synonymous with a high sex drive and frequent easy orgasms. How could anyone possibly label that a medical condition?

Actually, Restless vagina syndrome isn’t talked about for the rest of Allen’s article at all; whoever came up with that title merely exploited a documented condition (which we’ll get to in a bit) because it made the article more eye-catching and amusing to some.
No wonder Kate Harding thought RVS is a joke – Terry Allen provides zero information about the grain of truth he is riffing off of, and by labeling it (and more broadly, FSD in general) “Fake,” he preemptively discredits anyone who says otherwise, even if that means effectively calling the women & researchers involved in studying FSD fools and liars. And, after having done a little homework on Allen’s claims, I think he was counting on readers not to double-check him.
(No one with FSD read the comments section at either the Jezebel or Alternet article, as some of the comments are even worse and may cause explody-head.)

Allen’s article spends more time talking about the kind of female sexual dysfunction we all know and love (except not really.) He and Harding raise concerns about Big Pharma trying to invent and then market “Female sexual dysfunction” (Harding leaves the term in skeptic/scare quotes,) which she at one point refers to as “Listless vagina syndrome.” (I think that’s supposed to be another joke except that it backfires against me since I identify as having FSD. Do you mean to say that my vagina is lazy too?)

Interestingly, Harding uses skeptic quotes when talking about FSD, even as she acknowledges that, okay, maybe some of us really do have sexual problems that merit treatment… after all, she herself benefited greatly from a proper diagnosis of ADHD. But overall, the sentiment in Allen’s & Harding’s posts is that FSD must be a fake disorder invented by Big Pharma, in order to generate more money from a previously untapped market. FSD couldn’t have possibly existed before modern medicine (except that it probably did.)

But because folks like she and I exist, people with “Real” medical problems (and here I’m using quotes because I’m not comfortable with claiming my problems are more real & valid than anyone else’s, just because I can back mine up with medical records, which have also been and will continue to have their value questioned anyway,) we are putting everyone else at risk of exploitation by Big Pharma. Because I want treatment for my sexual health problems, I bear the responsibility & burden of enabling Big Pharma sneaking its phallic tendrils into all of our bedrooms & regulating our sexuality. That regulation might come in pill form designed to increase our libidios – but never too much, for if we become too sexual, too promiscuous, we may just be diagnosed with the dreaded Restless Vagina Syndrome.

I was really curious; is Big Pharma really trying to develop and then exploit a new, fake disease, by piggybacking on something that sounds similar to restless leg syndrome? (Only, it’s the vagina that’s restless.) What is this?

So I started searching for more information on this so-called Restless Vagina Syndrome. Luckily we live in the age of the internet, so my first starting place was Google. That search didn’t yield me much hard information about whether Big Pharma ever put out any material about RVS though – mostly it just points me back to Terry Allen’s article.

I was able to find an RVS parody video – Tranquivag on YouTube. The video pre-dates Terry Allen’s article by about 2 years; it was originally uploaded to YouTube in 2007. Is this what he was referring to? Did he get duped by a group of comedians?
It’s a comedy clip, so it’s not meant to be taken seriously. Or at least, I sure hope it’s not meant to be taken seriously. The viewer is supposed to find it amusing that a woman could be disturbed by invasive genital sensations that interfere with everyday activity and periods of rest – after all, who would find such usually pleasant sensations so bothersome, that you would have to take a medication with major potential side effects? I think the audience is supposed to think something like, “What a foolish woman; if she is bothered by her restless vagina, she should just have sex or masturbate.”  That’s not the way I processed the video though; to me it looks like hipster irony that backfires by re-enforcing negative stereotypes about FSD & the women who have it.
The video directs viewers to www.ivegotmunchies.com, which features other videos.
But no, this probably isn’t what Allen is referring to.

Maybe Google isn’t the best place to look for medical texts & research. I jumped through some hoops and got onto some online database systems. After several failed attempts on other databases, MedLine finally pointed me probably the right direction:

Waldinger, M., Venema, P., van Gils, A., & Schweitzer, D. (2009). New insights into restless genital syndrome: static mechanical hyperesthesia and neuropathy of the nervus dorsalis clitoridis. The Journal Of Sexual Medicine, 6(10), 2778-2787. Retrieved from MEDLINE database. [I'm linking to PubMed here instead of MedLine, since MedLine isn't accessible to everyone.]

Alas, even I don’t have access to the full text, and so I’m restricted to the abstract. Luckily, the abstract is useful for this discussion.
Based on what I’m reading in the abstract,
This doesn’t sound very funny at all… Restless vagina syndrome: “You keep on using that word. I think you do not know what it means.”

According to one sex therapist, RVS, or more properly Restless genital syndrome or Persistent arousal syndrome, sounds like it could be a form of pudental nerve damage.

I already know from reading other vulvar pain bloggers, that damage to the pudental nerve is serious – for some patients, it can be extremely painful to live with on a daily basis, and there’s no single cure for it. In this case, if nerve damage is the culprit for RGS, it manifests as hypersensitive genitals, prone to frequent orgasms even in the absence of actual sexual desire. There maybe other causes of restless genital syndrome besides nerve damage as well.

Regardless of the cause, the women involved in the study describe several related symptoms that would certainly cause me great distress -

Of 23 women included in the study, 18(78%), 16(69%), and 12(52%) reported restless legs syndrome, overactive bladder syndrome, and urethra hypersensitivity. Intolerance of tight clothes and underwear (allodynia or hyperpathia) was reported by 19 (83%) women…

To anyone who laughed at Allen’s title, did you even know what you were giggling at?
Why is this funny?
How is this fake?
Would you actually be comfortable having an orgasm in front of a stranger or in a medical setting, as three of the women in that study are reported to have experienced? What if you were sitting on a bus and the woman next to you started going into an uninhibited orgasm, what would your reaction be? Envy, discomfort, leering, slut-shaming… acceptance?
Why, when nothing else provides long-term relief, would this not merit medical research and possible treatment?

That doesn’t sound funny or something deserving stigmatization, nor does it sound to me like a condition that will be pushed onto the general, healthy population at large. I can only imagine how many doctors RGS patients are bounced around to in search of someone who is not dismissive of their concerns. And to be one of those women who lives with such a condition, and to read articles like this, must be humiliating.

PubMed offers just a few journal article abstracts about restless genital syndrome. The dates on the most relevant journal abstracts are all from 2009. That the dates are so recent, is probably why Terry Allen refers to it as “New.”
I get a few more research results when I search for an alternate term, persistent arousal syndrome. This is a relatively new field of study, according to Wikipedia. And, so far, I have been able to find one not-so-new article, from 2002, that details several other case studies of patients with persistent arousal syndrome, some of whom were desperate for long-term relief. One said of her experience, that it “Makes me so upset that I cry, as I cannot function normally; I make mistakes, get very hungry, and do not sleep… I would like the sensations to go away. I want to feel I can make plans and not have the strong sexual desire to make me miserable not knowing if I’ll get satisfied.” (She was also having difficulty reaching orgasm.)

Is Big Pharma really inventing this syndrome, or is could it be that only now is research being done, after years of neglect? I recall that in all my searches, I did not find much scientific research about Vulvodynia from years prior to the 1980s, and most of the books covering the topic in depth only started appearing within the last decade. Was vulvodynia such a controversial topic when the research was new, too? How long was its existence denied by so-called experts and laypeople? Perhaps that is what is going on here.

But really, RGS actually plays a very small role in Terry Allen’s piece. He just needed something that sounded interesting to grab the reader’s attention.

As is often the case, Allen’s article spends a lot of time talking about low libido and orgasm difficulties in women. Allen goes so far as to actually acknowledge that sexual pain exists, but he does not build on that topic. Allen even acknowledges the need to include the patient’s own feelings about their sex life in whether or not a diagnosis of FSD is appropriate. He gets this additional qualifier of personal distress needing to be present from a November 2008 article in Obstetrics & Gynecology, which pinpoints the statistic to about 12% of the population having FSD… but even this study excluded sexual pain in the researchers definition of FSD! I wonder how the figures would change if pain were included in the statistics.
(Also, as a side note, I’d like to point out here that when Jezebel covered that Obstetrics & Gynecology article, writer Tracie sounded shocked that more women aren’t distressed by their sex problems. I’m getting mixed messages here…)

Allen’s biggest concern, and one I’ve seen repeated elsewhere, is that Big Pharma has a vested interest in getting women to feel personal distress about their sex lives. The introductory line to his article goes so far as to claim that,

The pharmaceutical industry wants you to think that if you don’t have sex like a porn star, you’re in need of their drugs.

Even though I’ve been wandering the labyrinth of FSD for awhile now, I can’t say I’ve bumped into any doctors or reputable drug companies that say this to me. I’ve run into porn sites that tell me I should have sex like a porn star, and I’ve overheard conversations my peers have that tell me that. I’ve read that message in magazines and I’ve seen it on TV and in movies. And I’ve even gotten that impression while shopping for new sex toys. Sometimes, even the most sex-positive of sex toy stores, still manges to make me feel like I am somehow not measuring up, because I cannot or will not use one such toy or another, and because I cannot or will not have sex in certain positions.

Big Pharma doesn’t need to make me feel insecure about my sex life.
The culture in which I live does that already. Not only am I distressed by the experience of physical pain, but that pain is compunded by other messages I receive more broadly.
Why doesn’t Allen think about Big Porn, Big TV, Big Magazine and Big Body Image Distortion? For me, these are much bigger culprits I have to learn to navigate around in my sex life than Big Pharma.

Allen’s position is that if Big Pharma can get women convinced that there is something wrong with them for not having the sex life that Big Pharma (or, really mainstream media,) says they should be having, then Big Pharma can step in with cures, and thus make money. As examples, he cites the Orgasmatron, an accidental discovery stemming out of chronic pain treatment which has nonetheless been sensationalized by the media, (I wonder if the media raised the alarms when the Hitatchi Magic Wand first became readily available?) and LexaFem, an oral pill that has no entry on WebMD. (Must be an herbal stimulant or something. Not sure how likely it is that any doctor would prescribe LexaFem to me.) Allen is also sure to note Viagra’s use off-label for some women with FSD, and the dangers of using hormones to stimulate desire. (I’m not sure where that leaves me, as someone who had her hormone levels measured and found to be out of range for a healthy woman in her early 20s following birth control pill use. I’ve already used hormones, including estrogen & testosterone, to treat vulvodynia, although mine was a topical medication. That wasn’t in patch or pill form, but it’s still hormones. Am I supposed to be scared into not using them ever again? I still keep a little expired bottle of prescription hormone gel under my bed as a safety blanket.)

Allen then talks about conflicts of interest in medical research. Some of the studies on FSD have been sponsored by drug companies, including some of the bigger, more widely reocognized studies. It’s definitely worth taking a second look at these company-funded studies and thinking about how much influence that company may have had in the study’s outcome.

There’s two issues I can think of right off the bat that complicate matters regarding research independence. The first is, if these research studies, and others, about FSD including RGS are in fact independent of drug company funding, would Allen still be so quick to call FSD “Fake?” Does independence automatically redeem research? What about if independent studies draw the same conclusions that drug funded ones do?
One problem I myself am faced with is that, with the Restless Genital Syndrome articles I linked to above – I can’t tell from looking at the abstracts, whether these are independent research studies or whether they were sponsored by drug companies. I think I may need the full text to examine the full financial disclosure, if there is any provided.

The other issue I have with funding for research is, according to a recent NVA e-newsletter, some studies on Vulvodynia are also funded at least in part by drug companies. In this newsletter, I see Pfizer gave a financial award to Dr. Pukall of Ontario, Canada, for her research into vulvodynia & neuropathy.
Vulvodynia & pelvic pain conditions are still very much mysterious, misunderstood areas of women’s health. Can we afford to outright reject new research on vulvodynia and FSD broadly, on the basis that it is funded in part by drug companies? Or is it sufficient that patients, doctors and advocates be ready to closely examine these studies for possible bias?

Allen concludes his article with a quote by Liz Canner, mastermind behind the new film Orgasm Inc, which takes a critical look at the Big Pharma’s involvement in FSD. It is becoming increasingly clear to me that even though I don’t particularly want to watch this film and it will probably give me a brain aneurysm, eventually I’m not going to have any choice but to force myself to watch it sooner or later. Canner says,

“Maybe the best approach is not ineffective, over-hyped drugs with nasty side effects, but an end to disease mongering and a strong dose of comprehensive sex education”

Allen then tacks on, “Her film hits female erogenous zones that pharmaceutical fixes can’t find: your brain and your funny bone.”

What sort of sex education does Canner have in mind? How comprehensive are we talking here? In Canner’s sex education class, will we be focusing on the Masters & Johnson model of sexuality, or will we provided a wider variety of sex education materials? Will we be taking a Western point of view or a more global one that looks at many cultures and sexuality?
I ask because the sex education I went through a few years ago, was sorely lacking.
I would hope that Canner’s definition of sex education includes not just a critical examination of Big Pharma, but of the culture in which we live – a culture which both markets and condemns sexual activity. A culture that is uneasy talking openly about masturbation, consent and mutual pleasure. A culture which, in media depictions, often upholds sex and gender roles in sexuality, and leaves many subjects, such as BDSM, porn, open relationships, and certainly painful sex, taboo.

When Canner talks about sex ed, is she willing to spend any time educating the general public on the subject of dyspareunia, which can be (and for me is,) a form of FSD, and whether or not it’s worth treating? Or is dyspareunia to be overlooked in sex education the way it was during my high school sex ed, precisely because it can be a form of FSD?
I wish someone had taught me about vulvodynia earlier on. Would Canner consider that a form of “Disease mongering” too?

As for Allen’s last statement, he himself has to look a little harder to find my funny bone. Or perhaps I’m just one of those legendary dead-on-the-inside humorless harpy feminists, one who takes sexual dysfunction much too seriously.
Regardless, based on what I’ve seen Allen and others write about FSD & Big Pharma so far, I’m not so sure that I myself would find Canner’s film particularly funny. This is yet another example of an article about FSD which, rather than amuse and educate me, distresses & drains me.

An example of an article about FSD

10/20/2009 at 9:43 pm | Posted in Uncategorized | 5 Comments
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There’s an article about female sexual dysfunction posted at The Nation. Found via Our Bodies Our Blog. [Edit 10/21/09 - I left two comments at OBOS, hopefully will be taken seriously; the second is a little more fleshed out with an explanation of some other problems I have when the media talks about FSD like that.]

I read it. Both of the linked articles.

I don’t get it.

Unfortunately reading the OBOS entry and the article in question has rendered me completely incoherent with rage so I will not be able to do an in-depth competent analysis at this moment in time.

Why am I enraged? I’ll have to use a short list of points list since that’s all I can handle right now. I don’t have the patience to go into great detail tonight. Let’s just briefly touch upon what’s running through my mind right now:

Well, for one thing, I see that dyspareunia, sexual pain, is not mentioned in either article at all. The Nation article places a very strong focus on orgasm in particular, to the exclusion of female pelvic pain. So sexual pain is ignored and erased. Where did it go? Why is it not there? Instead, we have a focus on questions such as,

How else to explain that a reality as old as god–that the vast majority of women do not climax simply through intercourse–has re-emerged as dysfunction? Or that another grab bag of indicators of dissatisfaction and low desire are renamed as symptoms of hypoactive sexual desire disorder, for which a female Viagra or a testosterone patch or cream or nasal spray must be developed?

But I’m not fully comfortable with minimizing a woman’s desire for higher libido and/or climax through intercourse either. I’d like to explore intercourse in general, whether or not my partner or I climax, so I don’t think it would be fair of me to to say that exploring orgasm through intercourse is unimportant to someone who feels it is. I think it’s great to expand the definition of sex and to improve sexual satisfaction & explore other types of sex besides just intercourse. But I want to leave it on the table too. Keep it as one of many options.

One of the first lines over at The Nation article says, “Sex has been missing from the healthcare debate.”

I wrote an article about Healthcare and Vulvodynia last week.
But then, this blog is micro-small, so it’s not likely that many people noticed.

The lines go on,

“A shame, because sexual health, and disputes over its meaning, reveals most nakedly the problem at the core of a medical system that requires profit, huge profit, hence sickness, or people who can come to believe they are sick or deformed or lacking and therefore in need of a pill, a procedure or device. Case in point: female sexual dysfunction (FSD), said to afflict great numbers of women–43 percent according to some, 70 percent according to others, an “epidemic” in the heterosexual bedroom according to Oprah. Ka-ching!”

I’m still not fully understanding the claim that FSD is profitable. If that’s the case, why is it so difficult for me, someone who falls into the pain category, to find a doctor who is equipped to handle me? My experience is that often, my first line of defense doctors get tired of seeing me after I don’t respond to conventional treatments. I think right now my local gyno probably never wants to see me again.

The article goes on to talk about hysteria. For the most part I don’t find this section of the article to be inherently problematic. Except for the part about “pelvic congestion,” being in quotes, since it is mentioned as a real thing in Heal Pelvic Pain (p. 16)

The article goes on,

How to explain that middle-aged women go under the knife for vaginal rejuvenation, basically pussy tightening, and that young women go under the knife for laser labiaplasty, basically genital mutilation, saying they only want to feel pretty, normal, and raise their chances of orgasm through intercourse?

I had vulvovaginal surgery. It was to address the vulvar vestibulitis pain, and not for cosmetic reasons or to tighten things up (Actually, tightness is a real problem for me – I have too much tension in the pelvic floor.) But there was a minor cosmetic change, an incidental one. So, does that count as FGM too? I asked a women’s health class professor, who is also a practicing nurse, if it counted as FGM before scheduling the surgery. And she said “No.” Does surgery for medial reasons also count as condemnable? Or does it get a free pass for some reason?

Things continue forward.

How to explain that a doctor like Stuart Meloy of North Carolina, a throwback to charlatans who tried to shock hysterics into health with electric charges, has even one patient to test his Orgasmatron, an electrode threaded up a woman’s spinal cord and controlled by a hand-held button that the patient can push (assuming the procedure doesn’t paralyze her) to make her clit throb with excitement during intercourse and reach the grail of mutually assured orgasm?

I said to myself when I read those lines, “Huh, that kind of sounds like the TENS therapy I had tonight at my chiropractic & acupuncture appointment.” So I looked into it, and, sure enough, the diabolical device referred to here was originally designed to treat chronic pain. Reading that ABC article though, I’m not sure where the Nation author is getting the sufficiently scandalous softcore erotica quality lines of “Make her clit throb with excitement during intercourse” from, since the ABC article doesn’t actually say that part. I wonder if that line is in the actual study in question. Is that really how it works?

It just keeps on going.

A terrific new documentary, Orgasm Inc., by Liz Canner, addresses those questions in terms of corporate medicine and the creation of need via pseudofeminist incitements to full sexual mastery by Dr. Laura Berman and other shills for the drug industry.

I can’t speak for Dr. Berman, but I suppose now would be a good time to state for the record that I personally have never once received any compensation for writing this blog. If I get something later, I’ll disclose that if/when the time comes.
I did not think that sexual health & FSD was a “Pseudofeminist” concern. Is that to say that I, too, am a false feminist then, for talking openly about it?

And it doesn’t stop.

Female sexual dysfunction, it turns out, was wholly created by drug companies hoping to make even bigger money off women than they have off men with the comparatively smaller market for erectile dysfunction drugs.

Emphasis mine.
I would disagree with that statement. After all, we have evidence that vulvodynia, which falls into the often-overlooked pain category of FSD, existed as far back as about 2,000 years ago. There’s no way for me to know this 100% for certain, but, I have a feeling that I probably would have developed vulvodynia & vaginismus even if Big Pharma did not exist. There’s a lot of variables going on in the history of my pelvis, but a few warning signs stand out to me now. Hindsight still isn’t 20/20 though…
But looking at what’s been written about vulvodynia for years, and seeing women disclose online that they’ve had it for decades, I feel confident saying that Vulvodynia existed long before Viagra. I’m still waiting on the magic pink pill that will take away my sexual pain & get me in the mood. Right now my main pill options are tricyclic antidepressants and anti-seizure medication, to be used off label. There’s also conventional painkillers like Vicodin. I don’t take those kinds of pills though. Actually scratch that, I have an expired prescription for Valium that I’ve taken maybe 10 or 20 of in the last year when my general anxiety got too strong to manage.

Finally, Rachel at Our Bodies Our Blog put the words female sexual dysfunction in quotes, which is another thing I don’t understand. Is that to mean that FSD is not real? I identify as having FSD. It’s very real to me. I do not identify as being distressed by my levels of libido, arousal or orgasm. For me, those three features are a function of the pain, and sexual pain is my main concern. When I’m having a bad pain day, the triad of libido, arousal and orgsam decrease. Sometimes they can hurt too.

So yeah, I’m not in the best mood and mental state right now. That’s all I have to offer right now, as I wasn’t even planning to do anymore vagina blogging at all this week.

Survey says, still infected

10/13/2009 at 8:29 pm | Posted in Uncategorized | 5 Comments
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Welp.

I went to the gyno last week to get a follow up on those long-lived, resistant infections I had all summer. I had been feeling a little off when I went in, but nothing major. The exam itself went as well as it could have, which is encouraging – I haven’t reset back to square one pain-wise. The gyno took some vaginal swabs & did a urine culture. She prefers to run samples off to labs instead of diagnosing patients on the spot, and that works better for me too – since my infections don’t always follow the typical course you frequently see described online, I don’t think I could be diagnosed on site, by sight alone. Not enough typical-for-an-infection discharge to go by. My self-reported symptoms aren’t always obvious enough to set off any major alarms either. And even if they were, even I would have to question whether it’s something else like the pelvic floor muscles acting up somehow or skin irritation.

Unfortunately the results of that exam are not so good. I still have the same infections I had all summer – Candida yeast & Gardenella bacteria.
I am now in Chronic territory. That is the exact word the gyno used to describe the infections at this point. Chronic Candida.
My urine culture came back clear though, so the UTI I had has been wiped. Well that’s one good thing I guess.

Actually, when I pressed the gyno for more information, she read some more detailed results back to me – the Gardenella is present, but in a small enough concentration so that, if I weren’t noticing symptoms I could probably go without treatment, especially since I’m not pregnant. Some doctors like to treat for Gardenella if it’s present at all, other doctors will leave it alone if it’s not causing any major problems for the patient. So the bacterial vaginosis is optional at this point. I still want to treat for it though since I had noticed some urethral discomfort with urination a few nights ago. Just in case something is crawling up there again…

It may be possible to leave asymptomatic yeast alone too, but the gyno definitely wants to treat for it and so do I. I’m not exactly asymptomatic right now. Mild symptoms, but I’m feeling something. Yeast can cause inflammation & inflammation is the last thing I need right now.

But since all summer I’ve had two infections at once, I can’t determine which of these culprits is responsible for the mild symptoms I am noticing. I can’t narrow it down.

I don’t think I can risk not treating these infections. I’ll probably be dealing with some residual vulvodynia & vaginismus long-term to begin with. I’m scared of backtracking… Let’s not add more vulvovaginal health risks to the mix.

I am now at the point where I forget what “Normal” feels like. How does that go again? It feels like “Nothing,” right?
Oo, I had it for awhile. I almost had it. I almost knew what “Normal” felt like, for a few months. Oo, so close.
Nobody write any posts about how great it is to have a healthy normal vagina for awhile or else I might – go into a jealous rage or feel self-conscious and disappointed in myself or something.

Wow these infections will not go down for good. I’m not certain if the infections are responding to medication and then coming back later, or if the medications I’ve been using aren’t strong enough to kill everything. I’ve already tried antibiotics & antifungals, and what I’m noticing with them is that, while symptoms tend to clear up while I’m using the medication, after I stop they come back. I’ve been using the medication exactly as directed, so I’m finishing off everything. But maybe the treatments aren’t long enough? Or the dose is too low?

I’ve been taking steps to avoid re-infecting myself. I have not had partnered sexual activity since February. I clean all my non-porus dilators & toys, and when there are still questions about the dilator’s cleanliness, I use a condom over them. But I also haven’t dilated in the last month, specifically because I was afraid of re-infecting myself. So it’s definitely not the dilators, they are out of the equation. I wipe front to back, and when I wash I use a very mild soap on my body & don’t get any near my vulva or vagina. I washed my clothes with vinegar in the rinse cycle for awhile (this can be used to remove mildew odors in laundry,) I even boiled my all-cotton (breathable) underwear at one point. I boiled my underwear. That was interesting to explain to the parents why their pots were filled with cooking fabric instead of cooking food. I get probiotics in my diet. I take cranberry pills & drink cranberry juice on a regular basis (it tastes bad plain.) I even take a little supplement called “Yeast Fighters,” which contains biotin & garlic, among other things. So what am I doing wrong?

So what’s left after eliminating other variables?
Just me…

I think there may be something wrong with my vaginal pH that’s making it easier for organisms to grow. I actually have pH strip paper but it’s not sensitive enough to tell me anything. Perhaps my menstrual cycle is throwing the pH balance off due to blood in my vaginal canal. I’ve been eating a lot of probiotic yogurt & keifer, but that’s all dairy products – could be lowering my pH. Which is ironic, since the reason I’m eating yogurt & keifer in the first place is because I need to get some lactobacillus bacteria in me, to help me fight off more vaginal infections. I’ve been taking probiotic capsules too, but obviously they aren’t doing me much good. I suppose I should acknowledge diet could be a factor here, but I am currently unwilling to change my diet to find out anyway.

It’s getting scary also because now I’ve had an acupuncturist (not my regular guy) ask me if I have diabetes, and I’ve had a general practitioner ask me if I have any autoimmune disorders. Both questions were in relation to the long-lived infections. The answer to both questions as far as I know is “No.” But then I remember that quite a few vulvodynia patients do report having other simultaneous pelvic problems like IC or IBS, or autoimmune disorders. Is my body changing before my very eyes? Or am I just being paranoid?

I reviewed the chapter on vulvovaginitis (infections) in Female Sexual Pain Disorders. It’s telling me some things I already knew as a pelvic pain patient, but new things as well. According to one table (15.2,) the UTI I had earlier could be related to BV after all, although the mechanism for that relationship is not explained. That’s interesting though.

Treatment wise, I’m running out of options here. Although I’m not feeling terrible discomfort, I don’t want to leave this untreated. I’m worried I could backtrack & feel acute vulvar pain again if this goes on much longer.

I’m not completely out of options… but I’ve already tried a prescription antifungal cream, oral fluconazole, oral flagyl (I don’t do well with the gel form of this,) cipro, and Levaquin. Short term, I will be using Flagyl 1 more time for this round of BV, and an antifungal cream (which thankfully I have some pain-free experience with.) Then I will be on a long-term oral antifungal regimen for 3 months. It probably sounds more hardcore than it actually is – I’ll just take 1 fluconazole once per month. (Why the doctor is having me space them so far apart is beyond my understanding, since I know it leaves the body after just a few days.)
So what happens if I do this long-term thing and I’m still not better?

I might have to start thinking about seeing a specialist about these infections. Hopefully it will not come down to that. But I’m thinking if it does go down that way, I have three options. I could, see an infectious disease expert locally (even though this isn’t necessarily infectious at all; you can be a virgin & have a yeast or bacterial infection.) This might be the cheapest option since I could see someone in my insurance network, but I’m not sure I’d be able to find someone well-versed in vaginal infections specifically. I could return to my old vulvovaginal specialist, which would cost more but that practice knows my history & is prepared to deal with chronic infections.
Or I could do something else. Don’t know what that something else is yet.

I know there are alternative treatments. Oh I know, no need to remind me, I’m fully aware. I know I haven’t tried inserting probiotic yogurt or capsules directly into my vagina. I haven’t tried an apple cider vinegar or a hydrogen peroxide douche. I haven’t tried inserting boric acid capsules. I actually looked for gentian violet a few months ago at the local pharmacies & natural/alternative food stores a few months ago, but I couldn’t find anyone who stocks it.
I know other at-home treatments exist. I know other women have used these at-home methods. I know I could probably even find instructions online. Even Female Sexual Pain Disorders acknowledges the value of boric acid capsules (101).

I asked my own gyno if she ever prescribed these alternative treatments like hydrogen peroxide douches or boric acid capsules to her other patients, and she said, “No,” so she doesn’t really do that. I’m not comfortable using those treatments alone.

I am already still doing acupuncture & chiropractic. Already doing that alternative therapy.

But can you understand why I am afraid of inserting strange objects into my vagina after so many years of problems with it? I’m not sure I could use these treatments if a doctor prescribed them. Even if the vaginismus isn’t a problem for me when I use an alternative treatment, I’m not sure I’d be able to overcome my own anxiety.

In the mean time, I want to go do something fun which, does not require the involvement of my vagina at all. I think I need to do something to de-stress. See a movie or do some traveling. Something to take my mind off of it.
I don’t know how easy that will be if I am leaking antifungal cream for the next few days and if I have to remember to take an antibiotic at the same time every day, but, I want a break from this.
No, actually, I don’t want a break from my vag even though it follows me around everywhere. I am trying to make peace with it. I want it to be happy & content & healthy. I don’t know how other people do that.

I will be your lab rat for the evening

09/30/2009 at 7:05 pm | Posted in Uncategorized | Leave a comment
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My specialist’s office called me the other day. Or rather I should say a researcher from the office, to see if I was willing to participate in a vulvodynia study.

I don’t think I can say what questions were asked or what my responses were, since I don’t want to break confidentiality. But, I answered the questions honestly to the best of my ability. It was pretty simple. I think I see where we’re going with this study. I hope my answers, aggregated with other ones to produce statistics, help someone.

This study is only available to women who have had a vestibulectomy, so, chances are you can’t participate in this one.

Don’t feel left out though. The online support groups are helpful for this kind of thing – finding current research & networking – but the trade-off is that it exposes your identity to your friends…
But there’s some studies posted in there.

On one such group, the maintainer posted a link to this site: Dr. Laura Clark – and that site has links to 3 surveys. One is for women with vulvodynia, one is for women without vulvodynia, and one is for partners of women with vulvodynia. I participated in the first of those studies, and my boyfriend completed the last one. Anybody without vulvodynia reading this can think about doing the second one. I’m not sure where Dr. Clark is going with that second survey.

And I’m not sure yet which journal (if any) these results will be published in.

So yes. I am a statistic.

Fine.

It was nice to talk freely about having had vulvovaginal surgery without being judged & condemned.

Another infection? When will this end?

09/09/2009 at 7:34 pm | Posted in Uncategorized | 1 Comment
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I haven’t been healthy since June.

I have developed a urinary tract infection. This follows the vaginal, and other, infections I was fighting all summer. I don’t know if they are all related. Those vaginal infections were due to some species of Candida yeast and some species of Gardenella bacteria. And they hit me at the same time in a double-whammy. Both broke through my defenses and both survived the first round of treatment.

It is not clear whether the urinary tract infection is related to the vaginal infections. Strangely, my vagina & bladder feel fine… I always thought that UTIs were supposed to be intensely painful, with urinary frequency & urgency. When my relatives & friends have dealt with UTIs, they were completely taken out of commission for days. Yet I’ve been walking around, going to work, dealing with a sense of malaise…

Mine’s not acting the way I expect it to. No fever, no urinary urgency, just some post-urinary burning that is eased by diluting my urine with lots of water & cranberry juice. This is all isolated to my urethra…

…And, unfortunately, my kidney & groin lymph nodes.

Oh how lovely. A UTI that doesn’t follow the usual course of symptoms, thus making it even harder to identify. How typical of my body, to throw something at me that bends or breaks rules. And it’s in the kidney too, threatening my long-term health.

And let me tell you, it was a real trick trying to identify that lymph node pain. Since I already have pelvic floor issues to begin with, and I had done my pelvic floor stretching exercises the night before figuring it out, I had a hard time differentiating between normal post-exercise pain vs. unusual pain.
But I hadn’t stretched THAT much… and I had done nothing else to exhaust my legs that much during the long weekend. Wh-what is this? Where is this pain where my leg meets the rest of my body coming from? There shouldn’t be that much there… did I do something wrong?

Then I remembered that there are lymph nodes in my groin.

Oh, right. That. …Okay so it definitely IS an infection I’m dealing with here, and not some vulvodynia-related oddity or structural abnormality out of the blue. It was, and remains, my greatest fear, that this UTI is a hint of what interestial cystitis must be like… what if this is the beginning of IC for me…?
The nodes are reacting. They are trying to fight for me.  It must be an infection.
I do not believe the lymph nodes are swollen. They just hurt. It is a tired-pain. It drags on me.

When I noticed symptoms, I ran to the doctor, thank the powers that be that I actually have insurance and could even afford to run back & forth to the doctors several times this summer. If not for my insurance I would have not been able to afford medical treatment for some or all of these infections. I have been checking the insurance statements as they come in. If not for insurance, I would have racked up several thousand dollars of medical debt within 3 months. ($1,000+ of that was for a blood sample as part of a general wellness physical exam. I hadn’t had a physical since January 2007.) But with insurance, I “Just” had to pay, a few hundred dollars total over the course of the summer instead.

Ow. My budget.
Ow, my vag.
Ow, my urethra.
Vag & urethra win this round…

Of course it doesn’t help my wallet that several of the treatments I’ve taken this summer, for the vaginal and now urinary tract infections, failed. Thus forcing me to return to the doctors for different, stronger meds. I’m still responsible for co-pays but my god I’d be in deep if not for insurance. Would I have had to wait until the UTI developed into kidney failure then be rushed to the emergency room at the hospital…?

While I am grateful for the insurance blanket, and for having an employer who will let me leave work to run to the doctor’s office, I am not fully satisfied with my experience with doctors this summer.

How typical of my experience with ordinary run-of-the-mill doctors. They lost my urine sample.

How do you lose a urine sample… the sample that would have answered all questions – what am I facing here and how do I fight it?
So we don’t even know exactly which strain of bacteria we’re dealing with here. If it even is bacteria. Something strong enough to survive a week of Bactrim, anyway. What  resists Bactrim? Did I do something wrong in the past to breed resistant bacteria? HOW WOULD I KNOW?

So I had to go back to the doctor when it didn’t respond to Bactrim.

Unfortunately by then I had already started the Bactrim antibiotic, and was on day 6 of a 7-day course. I left a urine sample at the follow up visit, but since I was already on medication, it is doubtful that the culture will grow anything. If what I have is some kind of weird strain of bacteria, or a resistant strain, will enough show up in my urine to grow in a lab culture, even if I was on antibiotics?

So we are fighting in the dark.

Levaquin, for one week, once per day, 500mg.
I can’t tell if it’s working.
If Levaquin fails, what next?

Where are these infections even coming from?

How is it that I am developing infections that can be exacerbated by sexual activity, when I myself am not sexually active with a partner?

I’m not even having sex.
Even under a broad definition. My libido has been crashy for much of the summer, because of the infections. Certainly no partnered activity is taking place, as my partner is out of state. I’ve been keeping my dilator kit as clean as possible, even using a condom over them after the vaginal infections cleared.

And with this infection dragging me down, my pelvic floor is out of commission again. No sense trying to dilate if doing so risks pushing more germs up into me.

Looks like I’ll be taking a few steps back this fall.

Happy Birthday, Feminists with FSD

09/07/2009 at 1:14 pm | Posted in Uncategorized | 3 Comments
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One year ago this blog went live.

Technically it’s older than 1 year, since I registered it with WordPress a few months before making the very first post. I had been planning to do something like this for awhile, but never had a chance to start cranking out content until September 2008. Allow me bit of self reflection now on where I’ve been, where I am, and where I’m going.

I’m just as surprised as you are that I was able to keep on going for a solid year. A year in internet time is a pretty long time, although I maintain that internet time is slowly but surely starting to match up with real time as the web (if not its userbase) matures.

I’m still here. And I am still working with the vulvodynia & vaginismus. (Hooray, I spent another whole year dealing with FSD in the pain category. Except by “Hooray” I really mean, “Oh god I can’t believe I added another year onto the vagina saga. Why do these things take so long?”) And I still have quite a lot of work to do both on myself and on this blog…

The blog is still ~tiny, even by internet niche market standards. Tiny readership, tiny. Not a lot of incoming links from other blogs, although when they happen, they are much appreciated thank you.

Who out there on this big ol’ internet, is actually interested in this sort of thing? Feminism AND sexual dysfunction? With a stronger focus on physiological sexual difficulties and medical treatments? Not exactly popular or easy topics to talk about. Controversial to talk about too, since everyone seems to have their own idea for what sex “Should” be like. So many rules…
Controversial also because of different views of how to treat sexual dysfunction, if it even needs to be treated at all. I’m more open to acknowledging biological problems as possible culprits, and so it follows that I’m also more open to medical intervention than sexologists like Leonore Tiefer.

The blog title is Feminists with Female Sexual Dysfunction, but I suppose I could just as well have called it A Feminist with FSD. Singular, not plural.
I haven’t had any guest posters yet (Any one want to volunteer?) I know there’s a way to allow guest posting in WordPress but since I haven’t tried it yet, I don’t know how it works. I haven’t actively recruited guest posters either though, so I need to be more open to doing that.
The thing with actively recruiting posters – how do I do that without being invasive? Sexuality is such a private thing for so many people. There’s so much judgment & scrutiny about sexual activity & morals. If you fail to meet arbitrary performance standards in bed, or if you speak up openly about sex, or disobey unspoken cultural norms, you can get harassed.
I don’t want to approach someone out of nowhere and be like “Hay buddy wana write about your deeply personal sexual experience on a public blog?” Is it acceptable to recruit if another writer opens up on their own blog first?
Consider this your invitation.

There’s several sexuality and/or feminist books I read that I haven’t posted reviews for. I’d like to get around to those reviews, just in case they’d be helpful for others.
And then there’s still other books & materials I haven’t read and want to post reviews for when I get around to reading them. But there are so many… I keep accruing these books and the pile just grows.
I’ve considered writing reviews for things besides books too – lubricants, dilator kits, accessories, etc. Tangible things mostly… But I was thinking there may be a way to work in massage too, as a way to relax & treat the muscle tension.

On a related note, I really need to update my References page. It’s outdated since I read more books & I think I can actually delete some references that I don’t include direct quotes or paraphrases from.

Meanwhile, bloggers keep on blogging around me, and sometimes I feel compelled to stop whatever post I was working on, and start a new one as a response. I actually have several topics in the work-in-process queue that have never seen the light of day. Unless I accidentally hit “Publish” before I was ready & then had to call it back quickly. Oops.

Then there are topics that neither bloggers nor books cover comprehensively. News articles come out or posts are made on websites about some such topic I want to touch but haven’t gotten around to yet. Or personal events happen in my daily life that are worth mentioning here.

But if I haven’t talked about those controversial news topics yet, it’s because it will leave me incredibly vulnerable, and I’ll definitely have a minority opinion.
I want to talk more in detail about the vestibulectomy surgery. I want to talk about what it’s like to me, post-vulvovaginal-surgery, when I see other bloggers, feminists & doctors talking about genital surgeries (usually about how problematic they are.) The short preview is: I feel like I’m collateral damage, here! You know I’m standing right here, right?
I want to talk about why I don’t want sex therapy.
I want to talk about relationship advice columns & columnists – I still haven’t found one I consistently like.
I even have “Fluff” posts in process – I haven’t finished writing easy slow news week posts.

I think I spend too much time working on drafts. I have too many draft posts in the queue right now. I go back and touch up each of them from time to time, but I’m still not fully satisfied with them. And I don’t like to publish posts before I feel ready.
Perhaps I should just say “Fuckitall” and post things before they’re perfect. They’ll never be perfect anyway.

Sometimes my posts are only about feminism OR sexual dysfunction, but not both at the same time. I try to aim for covering both when I can, of course, but sometimes I can’t figure out how to work one or the other in. I’m hoping that these exclusively feminist or exclusively sexual dysfunction posts are still acceptable though, since, maybe if you’re a feminist reader you don’t usually read about sexual dysfunction (or the only things you know about sexual dysfunction comes from one other source, so you never really thought about it any other way.) On the other hand, if you have sexual dysfunction, maybe you never thought about feminism & how it might teach you a thing or two and maybe make life ~not easier, per se, but, it could provide a deeper understanding of why things are the way they are and possible ways to change them.
Or maybe you’re like me – both self-identifying as a feminist, and dealing with some kind of sexual dysfunction, and in stumbling across these one-or-the-other posts, you know you’re not alone.

But by the time I do finish working on whatever post I was making starting weeks or months ago, is the topic even still relevant? Is it outdated already? Do I post it regardless, even if it’s in response to an old post, book or study from like a year ago?

Sometimes instead of making a whole separate post, I’ll comment on other people’s work, but this is rare compared to others. You don’t see me pop up in comment sections too often, although I read several popular feminist blogs (definitely not all of them.)
I feel that I rarely anything of value to contribute in comments. Nothing original anyway – most of the time I think a lot of my comments would simply be “I agree” or something like that. Once in awhile I’ll have a different perspective or I’ll have done research on a topic so I can provide a personal or historical example of whatever’s being discussed. In which case I’ll say something.

I try to keep blogging on a fairly predictable schedule, which is fairly reasonable for me to maintain. I aim for one original content post per week + the weekly blog link roundup. I haven’t apologized for not being able to keep up with the schedule, since, I don’t think I’m important enough for anyone to actually care if I disappear.
Keep in mind, in my secret identity, I work full time in a completely unrelated field, so my only opportunity to think, act, read & write is when I have time off. And I have other interests outside of feminism & sexuality, so I like to do other things during my downtime too.

I’ve been considering whether or not to participate in this year’s NaNoWriMo/NaNoBloMo… but I think if I tried to write 1 post per day, there’d be a LOT of filler. What would I have to talk about that doesn’t require too much time & effort to produce? “Today my vagina feels like X.” “Today at work I peed 10 times.” “I bought a new video game today and it sucks.” “I am stresed out at work and as a result my pelvic floor is tense today and it is being very uncooperative.” “I met a puppy today and it was cute.”
I am not confident that I can stay on target & maintain a level of analysis in my content that I am comfortable with, under such strict time presures. If I had to make something each day, I may as well just use Twitter.

I’d like to take this moment to review some popular search engine terms that point readers here:

20/20 vulvodynia – (And lots of variations on this term)  Speaks for itself, you’re probably looking for this post, analyzing an episode of the program 20/20′s vague coverage of female sexual pain.
hair stuck in clitoris – (Again, lots of variations on this term.) I knew I wasn’t the only one this happens to! No one ever talks about that! Yeah sorry to hear about that. That’ll happen sometimes… ouch! Sorry, still haven’t got any advice on how to prevent or treat that.
vulvodynia homeopathy (And acupuncture or alternative treatments) – Has a mixed track record for me. It’s up to you if you want to try it. I guess I’m one of a relatively few who wrote in great detail about this topic.
watch teeth – I’ll save you a few hours – it’s a bad movie m’k. I should probably like it because it should be the ultimate revenge flick. Nope. Don’t like it. Still no good!
my first sexed teacher (And variations on this theme about sex ed teachers, some rather disturbing) – I have a feeling  you’re probably looking for porn… Whoops. Haven’t got any here. What a disappointment it must be to find the polar opposite here.

I commented to my boyfriend about about that last search engine term. His reponse:

Boyfriend: HI LOL DO U LIKE DRAGONBALZ
Boyfriend: I THINK I MISPELLED VEGETA AND ENDED UP ON THIS PAGE

Yeah it’s kind of like that.

So there we are then. Some self reflection on this blog’s one-year anniversary.
Incidentally, this blog was “Born” under the sign of Virgo.
There’s a joke there somewhere… There’s got to be some kind of humor in that. Born under the sign of the virgin… There’s something ironic there… can’t quite put my finger on it…

Right now my plan is to “Stay the course! Four more years!”

Stay tuned…

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