Talking about FSD: How not to

11/03/2009 at 9:48 pm | In Uncategorized | 4 Comments
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I want to go back and revisit a post from a little over a week ago, my response to an article at The Nation about female sexual dysfunction, and Our Bodies, Our Blog’s coverage of the same. At press time, my reaction was to be consumed with rage. The anger has settled down so I’m merely fuming at this point. That’s about as much of an improvement from me as anyone is going to get.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Or I could be totally wrong.

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

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

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

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

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

What does medicalization even mean?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m sure there’s more…

Interesting posts, weekend of Halloween 2k9

10/31/2009 at 10:50 am | In Uncategorized | 2 Comments
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Dear Internet, Happy Halloween! Trick or Treat and whatnot. Uh oh, you’ve stumbled across the blog/house that gives out Fruits & Vegetables! Augh! It’s a trap!

Another busy week for me. We shall return to our regularly scheduled Vagina Blogging shortly; I’ve been quite busy for the last week with work & plans for some much-needed downtime. So it looks as if I had nothing of value to contribute to the blogosphere, except that I really did & just didn’t get around to finishing my post.

Posting will likely remain sporadic for the next two weeks.

Also I wish to place a reminder here: I am looking for Guest Posters. I want to hear more perspectives on the themes dealt with here at Feminists with FSD. I’m not sure what the best way to recruit new authors is though, since I’m dealing with a very sensitive topic. I don’t want to go to someone’s blog and be like, “Hey u wanna write a post about your sex life and/or feminism on a public forum?!” and offend the blogger by being invasive & making assumptions about their sex life. So for now I think it’s best if I leave this request up here and repeat it with the Weekly Blog Link Roundup. I don’t even know what the criteria for recruitment should be, so, for now we’ll go with, “If you think you would fit in here, you probably would.”
In an attempt to preemptively fight spam and rude comments, I still haven’t posted my blog email. Please leave a comment on this post if you want to write something. I’ll screen comments so you can remain anonymous if you want. That way I’ll have your email and we can collaborate. Please be careful when leaving comments on this post if you wish to remain anonymous though; if you’ve left a comment here previously, it will auto-go-through (It’s just a setting of WordPress.) Use a different e-mail address and your comment will remain screened so no one will know you left one except for me. Of course if you’re just using your internet identity anyway and aren’t too worried about being anon then just use the e-mail you used before and I’ll know it’s you. If you left a comment here before I mean.
Having Guest Posters help me out around the blog would also make it much easier to crank out new content in situations like this when I’m too busy with off-internet events.

Since I was so busy, I didn’t get around to doing a weekly blog link roundup last week! We’ll just have to make up for that now.

On with the show! Posts I found interesting over the last two weeks (10/18-10/31.) If’n you found links of interest during that time and want to share ‘em, post ‘em in comments.

The Demise of Off Our Backs - I’ve been waiting 2 weeks to post this link. It’s a must-read, although it may look somewhat intimidating at first. I read every single word of it and it’s very revealing. Daisy provided her own experiences with OOB, and credit where credit is due, incorporated posts by Celie’s Revenge and from redmegaera. Why isn’t this in OOB’s history page on their website? Ouch.

Notes from a bitch…reading is fundamental… – Interesting to me because I have absolutely zero interest in Where the Wild Things Are, and although I know I definitely read it as a kid, I don’t remember being thrilled with it. It has no meaning to me.

Today in Healthcare – According to one poll, a majority of ordinary folks like you & I now support a public option in health care reform. Possibly related – Not a “Golden Rule Insurance” Policy: Do Unto Others As You Would Have Them Do Unto You - what the… sterilize after a C-section and the insurance company *might* consider coveing you? What is this?? People this is why there’s a drive for reform. Also possibly related: It’s time to put the insurance companies out of their misery – a case where a graphic is worth 1000 words. More: I Am Not A Pre-Existing Condition – how insurance company policies penalize women for, basically being women & experiencing things that women experience more than men. More followup: House bill released – huh the bill may actually include a public option after all!

The Abuse of the Western Children of Misogynist Attention-Seekers – This goes beyond doin’ it for the show… those poor kids are caught in the middle of manipulation & allegations of domestic violence, & they are being raised to parrot these values. Possibly related: An Unusual Case of Father-Blaming – huh you know what I didn’t think about it before, but now that you mention it, yeah a lot of the time the media focuses more on the mother’s actions… I mean there IS a whole blog dedicated to exposing the media’s fascination with mothering and blaming moms for horrible things.

The Pain of House – I admit it, I watch this show regularly. Ouyang Dan’s critique is different from what I’m more used to seeing with regards to the show though, since she’s not demonizing House’s vicodin use. It’s a good kind of different. And check out the comments too – turns out that Hugh Laurie may’ve been hurting himself IRL from mis-using House’s cane.

Samples – Another different POV on the use of medicine samples often available from the doctor’s offices. Now, yes, this really does to be looked at critically, in, is it really a good idea to have these meds out for just about anyone, the idea being that the patient will like their sample and take up using a certain medication long term & have to pay for it… but sometimes the samples make sense if only to screen out meds that probably wouldn’t work.

The Negative Side of Positive Thinking – I’ve said it in the blog link roundups before, and I’ll say it again: I really, really do not like the whole power of positive thinking movement. Nope, do not like it, do not want. Find it counter-productive. Find it insulting to those who do not think positively all the time. Think it’s too easy to abuse. Feel like I’ve made pretty good progress health-wise with my own method of thinking & doing, which is generally not all sunshine & flowers, even as I know I will probably never be 100%. If you those statements of mine to be negative and perpetuating some kind of self-defeating cycle, maybe you should click through & read Annaham’s post & think about the other side instead. Possibly related: CFS/ME and “faulty illness beliefs”: The incredible hubris of the psychiatro-patriarchal complex – an exploration of doctors (in this case a psychiatrist) upholding a mind-body connection which in turn sounds a lot like victim-blaming when it comes to chronic illness. Huh, a mind-body connection complex… Where’ve I heard that one before… There’s something rather familiar about this mind-body thing I just, I can’t, quite put my finger on where I’ve seen this sort of thing put forth by so-called experts before… something that pertains to me… Hmmmmmm.

How to Take Your First Step into BDSM – This lesson seems kind of short, I think it was truncated for use on the internet… but I could definitely use an instruction manual for how to do just that.

I Get Letters – the bullshit Melissa has to put up with when trying to maintain safe space for less privileged posters. This could happen (and does happen) in a lot of other places across the intertubes.

Sexist Beatdown: Superfreak Edition – You know, I actually read the first Freakonomics book a few years ago. I can remember some parts better than others… it was okay… overrated… Well the authors are coming out with a sequel, and it’s making some very controversial statements again. Controversial, and probably outright wrong. Tiger Beatdown is one of the blogs looking at the author’s assertions about sex workers in particular. There was an episode of 20/20 or Dateline on about this book a week or so ago too so you might’ve caught that. I saw it, and all I could think of were the feminist critiques of the book so I was like  “Uhhhh….”

Word to the wise: Never date a guy who reads Details - god I am so sick of seeing this argument – the one about the woman who deliberately tricks her male partner into getting her pregnant and then has the baby to get the BIG BOYFRIEND $$$$. I’ve seen this on other forums & online especially and whenever I pin the poster down about providing examples, it’s always ‘Well a friend of a friend of mine said…” or “I heard that…” Yeah you heard wrong. And then the poster I confonted is all resentful and … this weird, unbalanced state of, being pro-life hardcore except for when the girlfriend “Tricks” the boyfriend into “Getting her pregnant.” Then the poster is no longer pro-choice at all but wants the boyfriend to “Have some say” in determining what happens to the pregnancy.

the vampire Fleshlight (vagina dentata fleshlighta) – Okay this whole Twlight thing has to stop now; they are now making Vampire themed Fleshlights (If you don’t know what that is, maybe you don’t want to click on the NSFW link.) Unfortunately this is not an example of “Vagina dentata” at all and I’d… Somewhat morbidly curious to see how that would look & work out as a fleshlight. Not curious enough to actually know though.

Sorry, radfems, it really isn’t… – for some reason, Renee at Womanist Musings let a guest post go through titled, Sorry, Men and Fun-Fems: All Porn Is Rape, All the Time (Or, If You Are Watching Porn, You Are Watching Rape). Once again those who sit on the other side of the fence (including sex workers themselves, oftentimes,) have to come out and point out that no it doesn’t really work that way and there are some big problems with making all-encompassing statements like that. Snowdrop Explodes isn’t the only one pointing out the flaws in the argument; Renegade Evolution is on the scene for the millionth time (It must get tiring to have to defend yourself all the time! I know I sure get exhausted trying to defend the reality of FSD when I hear the same bullshit about it over and over again!); Renee herself had to leave an editor’s note explaining that she disagrees with her guest poster (but let the post through in the interest of generating discussion…) Click on the WM link & read through the comments to hear the other side. Unless you’re on FactCheckMe’s side in which case perhaps you’ll find her post useful later on down the road for defending your own position.

Where Did Those Gang Rapists And Their Cheering Section Get Their Ideas? – (Trigger warning re: sexual assault!) This is an in-depth look at some of the details that are coming out about the case of a 15-year old girl gang raped outside of her own high school’s homecoming.

There’s definitely more posts than what I’ve included here for the roundup, but, as I said I was super busy all week so I probably missed a lot of good ones. And I may miss more over the next few days! If you want to be included you’ll need to speak up here.

Hey, IPSA e-mailed me back!

10/22/2009 at 6:05 pm | In Uncategorized | Leave a Comment
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I should really check my e-mail more often. Check it out; remember that post I did about the movie, Private Practices: The Story of a Sex Surrogate? I said I’d e-mail the organization mentioned in the film, IPSA, with some questions, and someone answered me!

I asked:

So far the questions I have gotten are, how would surrogacy work if a female client is a sexual pain patient, and in a heterosexual relationship – what sort of things would a surrogate do for the couple? Would the surrogate act as a stand-in for the female patient, or (this is what I was thinking) would the surrogate demonstrate pleasurable sexual techniques on both partners?

The other question was, what is the percentage of male surrogates (presumably the asker means within the USA)?

My own would question would be, how would one go about finding a surrogate who is equipped to handle pelvic pain patients?

And a representative, Shai Rotem,  e-mailed me back (Name and response is being used with permission:)

1. The basic structure of surrogate partner therapy consists: Client-Sex therapist-Surrogate partner. In cases of female with sexual pain disorders, there is one more professional the client should work in conjunction with: physical therapist who specializes in pelvic floor muscles. From our experience in this way work (client + surrogate partner + sex therapist + physical therapist) most of the cases get 100% of success.

2. Surrogate therapy was designed for people without partners. So, in case of couple, they both, together have to see a sex therapist. They have each other to practice with, most sex therapists will give them some homework – experiential exercises they have to do at home. It could be some techniques of touch, some sexual behaviors, readings, watch videos etc.

3. There are more female surrogate partners than male surrogate partners and that because there is a lot more demand. There are a lot more men seeking surrogate partner therapy.

4. The best way to find a certified surrogate partner is contacting IPSA by e-mail. Our associate will help with referral and locate a surrogate partner in the clients’ location. they can use this e-mail address: referrals@SurrogateTherapy.org

How about that! Ask and ye shall receive.

An example of an article about FSD

10/20/2009 at 9:43 pm | In Uncategorized | 2 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.

New NVA e-News letter

10/19/2009 at 6:56 pm | In Uncategorized | Leave a Comment
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A new issue of NVA Update is available to anyone interested. (This is not to be confused with the NVA Newsletter, which requires National Vulvodynia Association membership (anyone can join,) or a payment if you do not wish to become a member.)

Back issues of NVA Update are available here.

This is a useful feature; it contains news updates, recent research, links to lots of other resources, and books of interest. While the primary audience for the newsletter is anyone familiar with vulvodynia, these updates might also be of general interest to chronic pain patients, as there is often overlap.

Without copying & analyzing the entire newsletter, I felt that one interesting thing about this issue is, it sounds like we were heard after the 20/20 special aired – the newsletter acknowledges some of the comments made about the program, notably the censorship (The word “Vulvodynia” was never spoken aloud during the show,) the lack of detail on treatments (including surgery & physical therapy,) and the small case study used for the program (3 women.) I addressed some of these concerns about the 20/20 special here. We said something – looks like we were heard. Let’s not stop the dialog here – there is still much work to do.

The NVA even issued a press relesase about the show.

That’s all I have to offer for now.

Interesting posts, weekend of 10/17

10/17/2009 at 8:17 pm | In Uncategorized | Leave a Comment
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Dear internet, I don’t even know how I got here. I think that there was something about me working my day job, then coming home to family drama and getting recruited for other people’s tasks without getting any support myself. I got nothin’ over here. Yeah hey like anyone cares (boo hoo, self pity party. Would I like some cheese with my whine. …Does the cheese have any probiotics in it?)

Anyway, at least I actually like writing the weekly blog link roundup, which consists of posts I found of particular interest over the last week. If’n  you found links of interest, post’em in comments.

Starting with grouped topics again:

Why Inclusionary Language Matters – This is a very good post from FWD/Forward, & I would encourage you to read it. It talks about feminism, inclusionary (and exclusionary) language, and how such language (and the people who use it) play into intersectionality. This is a concept where you have to remember, if feminism is about women, that means ALL women – including the non-heterosexuals, non-cis women, women of color, those who have disabilities, and it goes on. For one thing, this addresses shortcomings in the the far-and-wide feminist community (If there even is such a thing, since, there’s no central clubhouse we all go to once a month for cookies & girl talk.) The things you say may seem light & harmless, but they can be really hurtful to someone to whom such language is meant as an insult. You may be trying to reclaim the word after years of bad history with it, but some words are very badly tainted.
Related: This FWD/Forward post is also interesting to me: Who hates to hear they look great? – Because I’ve heard stories from other women with pelvic pain & overlapping conditions who talk about this sort of situation… living with invisible, chronic conditions.

Exclusively breastfed baby denied insurance unless he goes on a diet – This makes no sense. I thought breast feeding babies is good for them? I thought big healthy babies were – healthy? What? How do you put a baby on a diet? Why would you insist on making parents do that?
Related in the health care field: Action Item – hey I wonder what it would be like if that big baby had been female, seeing as how insurance companies in the US penalize women for so much.
Related: No One Could Have Predicted the Insurance Companies Would Be Uncooperative – Insurance companies are influencing Congress about health care reform, trying to derail it, in this case, in this case by releasing a PriceWaterhouseCoopers report that suggests your premiums might be high in several years. Curious to know if that’s right? Go here & click around. Seriously just click around; there’s analysis available on the pros & cons of the report.
Related as a health care post: “The Voice of the New Castrati” – What the hell is this??? “Castrati?” Oh, it’s Limbaugh talking again.
Related: Health care IS an anti-racist issue. – nojojojo talks about being underinsured & needing to get preventative care for a health condition which effects , which insurance companies don’t want to pay for even though she HAS insurance. But she hasn’t been on insurance long enough for it to be covered. Not only that, but as a WOC, she is acutely aware of how insurnace premiums & practices done by doctors have disproportiatenly effected POC.

You may’ve heard by now that a justice of the peace in Louisiana denied an interracial couple a marriage license. As someone in an interracial relationship, this both terrifies and infuriates me. What is this, the middle ages? Looks Like the 50’s Are Back from Shakesville. Thinking of the children in our “post racial” America from Harpyness.

And then posts that aren’t necessarily related (OR ARE THEY???)

Moral Panics, Sex Panics: Fear and the Fight over Sexual Rights – This is an interesting post to me because I just bought a book that sounds remarkably similar – Sex in Crisis. They sound very much alike. I only read the first two chapters of Sex in Crisis so far, and I am ~*~in love~*~ with those two chapters (even though when the author talks about FSD, she still only refers to low libido/arousal, to the exclusion of the pain category… and does that thing I don’t like where Big Pharma is the devil or something.) I’d like to do a book review when I’m finished reading.
Want to read those first two chapters of Sex in Crisis & see if you’ll like it too? Click here!

On the Air – Interesting because holy shit, my mobile device gets Podcasts live? Hahaha this is awesome. I listened to the hour long live segment of this show.

To Merge Or Not To Merge – Some things to consider when paying bills with your significant other.

Dear Wellness Center Nurse – This is interesting to me because, in my experience, the words that probably are assuring & comforting to many women getting a gynecologist exam, “This looks perfectly normal,” to me that says… No, no, that’s bad, how can you say that?! How are you not seeing all this pain I’m in?!? How is there no visible, noticable physical cause?! How are you not seeing the redness? You’re not paying attention, you’re not looking, how are you not seeing what’s going on, is it like this for every other woman does every woman feel this is this really normal? And then someone is going to jam a speculuum in there and say “This isn’t hurting you!” while I’m laying there crying & trying to recoil on the examining table which is just going to make the doctor think that it’s all in my head for the millionth time. No. My experience with that phrase is the exact opposite. I do have to worry about what other people think of the external looks because if they don’t see what’s going on they probably aren’t going to take me seriously when I come in complaining of vulvovaginal pain.

Whatever Happened to Tiger Beatdown? – Aw, that’s a shame, I like Tiger Beatdown… Well I made it past my blog’s one year anniversary and I’m still here but that could be me one day…

Guest Post: No to Eggsploitation! – Wow you know what, now that I think about it, I don’t think I’ve ever even heard of the long-term side effects of egg donation.

Attorney Uses “Boys Will Be Boys” Defense in Alleged Sexual Assault – [Trigger warning re: sexual assault] – A male college student broke into multiple female dorm rooms and sexually assaulted the students. But this is being downplayed as sexual assault; it’s been called a “’typical freshman’” mistake.” How is that typical?? Cara talks about how this attitude, which often starts out early, is pervasive, and carries into adulthood, hurts women, as in this case.

I’m sure there’s more…

Survey says, still infected

10/13/2009 at 8:29 pm | In Uncategorized | 4 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.

Interesting posts, weekend of 10/11

10/11/2009 at 5:47 pm | In Uncategorized | 2 Comments
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Dear internet, I could really use a vacation.

It’s that time again – time to share links that I found particularly interesting over the last week. Post your own links if’n you got ‘em.

Couple new websites sprang up sometime in the last few weeks that deserve attention in general:

My OB said WHAT?!? – the horrifying things that obstetricians have said to patients around childbirth. I wonder if there is a pelvic pain patient version.

I Blame The Mother – explores instances of the media blaming moms for crimes that happen to their kids or that are committed by their own offspring. Wow it really puts things into perspective when it’s all in one place like that.

FWD (feminists with disabilities) for a way forward – a group undertaking to bring attention to the marginalized group of people with disabilities (PWD.) I especially enjoyed this post, Where I jump in and defend pills… If you’re new to disability blogging, you might want to start here: Disability 101: Defining Disability, but please remember to take some time to educate yourself.

Couple more topics I’m going to group:

In the realm of politics, we have several notable posts: The Answer to Your Question is “No.” – The question being, whether women should back Sarah Palin if she runs for president in 2012. The Feminste post is relatively short so if you’re not convinced, you’d probably have to hang out around the blogosphere for awhile longer, and that’s kind of a drawback to the post… but having done just that, I agree with the answer.
Related, we then have Her Place – click through to go to the article, Congressional GOP Fundraising Committee On Pelosi: It’s Time To ‘Put Her In Her Place’ - I mean really now wtf is this? What the hell, congress isn’t Pelosi’s place? Did someone actually say that? Someone actually said that.
The next three links may be triggering: Go, Senator Franken! Al Franken led the charge to change the rules that forced employees to sign arbitration contracts that applied to, among other things, sexual assault on the job. Who would actually vote against such a bill? Feministe’s got their names.
Clinton: Guinea’s Military Leaders Should Step Down – At a protest, Guinean soldiers targeted women in particular with acts of violence & sexual assault. Secretary of State Hilary Clinton is calling out the Guinean government to be held accountable.

It sounds like Amber Rhea is familiar with the health insurance bullshit I blogged about earlier this week: Health and meds rambling – what with the, some doctors not taking insurance so you have to do-it-yourself and,

fax it five times before you get any response, and then six months later you get a check for $15 after you’ve spent $1,000. She said, “Doctors’ offices have to do that, too” and I said, “I know, but that’s not my job!” Then she said she understood why a lot of therapists in private practice don’t take insurance, because they wouldn’t be able to make a living w/ the insurance rates. HELLO! Yet another way our current system is totally fucked-up! The doctors hate it too, people!

Amber has more insight into pharmaceutical treatments for mental illness besides that tidbit.
Jeanne wrote a post at Chronic Healing about Hurting and Healthcare. Oo, she beat me to the punch by a day. Not that it’s a race to get your thoughts out on healthcare… we have another experienced voice to add to the mix.
Your TV is Lying to You – The post starts out with a look at that season premiere of House and then segues into a discussion about healthcare & how expensive it is and now House does not exist in real life to bail you out of mortal danger when you get sick in real life.
All Denials of Coverage For Pre-Existing Conditions Deserve Equal Outrage – Springs forth from news that insurance companies in some states deny coverage to clients, citing domestic violence as a “Pre-existing condition.” What about all the other pre-existing conditions?
And then there’s The Opt-Out Public Option; and, also, tax breaks for hiring – another iteration of the public option that would allow states to decide whether or not to join in. Oo, I really don’t know about that – I’m thinking of gay marriage here & how it’s all splintered up across states now… that didn’t work out so well for gay marriage…

If it looks like the Letterman sex scandal is generating less outrage than the Polanski rape scandal, it probably is for various reasons. Sorry, you can’t bully me into joining up with this insanity – It’s still problematic though.
Sungold @ Kittywampus has two posts on the Letterman issue: Letterman’s Disingenuous Confession and the critical More on Letterman: Workplace Romances and Horndog Bosses.

Oklahoma Law Poses Serious Privacy Threat to Women Obtaining Abortions – How would this even be legal under HIPPA laws??? I’m not questioning the existence of the law in question, which looks more like a thinly-veiled attempt to shame women into giving birth against their will, especially those women who are living in relatively isolated areas where enough supposedly non-identifying information will make easy to identify just who is doing what.
Figleaf has a post as well, jumping off from Echidne’s question of why this law doesn’t target the males involved in bringing forth such pregnancy & abortion. The… What? Oklahoma’s Parthenogenisis Prevention Policy? What About Teh (Existence of) Men?

The following links may be triggering: Reported rapes hit a 20-year low – Key word here, “Reported.” That the rate of reported rapes is dropping, does not mean it is safe to stop trying to prevent rape & provide support to victims. Keep in mind how many don’t get reported. From Shakesville, Rape Reports Hit Two-Decade Low – shows some reasons why there’s still a lot of work left to do…
Need help understanding what some of that work is? Click on this must-read from Melissa – Rape Culture 101

And then we have general interesting posts that are not necessarily related to one another in any way, shape or form.

Feminist Carnival of Sexual Freedom and Autonomy: Sex & Consent Edition – Audacia Ray hosts a blog link roundup carnival.

“Onyxia” is WorldofWarcraftese for “Guild Wipe*” – I never got into MMORPGs myself, although I’ve always loved solo RPG’s. But I am familiar with this phenomenon – misinterpreting the gender of NPCs (and player characters, for that matter.) Some people still think the dragon Onyxia is a male but she’s always been female. I’ve seen this happen before with other characters, notably Tiamat from Final Fantasy – I seem to recall reading GameFAQs and other websites that still refer to her with male pronouns – even though the historical mythological character she’s based off of is a mother.

Women like politeness, being treated like humans: news at 11 – Who would have ever thought that women using personals sites would respond positively to what should be common sense manners & consideration? This is an area where the pictures are worth 1000 words, thanks to the charts & graphs included.

The Female Condom 2: Cheaper, Thinner, and a Lot Less Squeaky – with my favored Durex Avanti original condoms getting phased out in favor of a “Better” (not really) material, I am forced to look for alternative barrier methods of contraception. I really liked the polyurethane condoms :/ I might have to try these…

‘Off Our Backs:’ white supremacist feminism – I have problems with OOB for different reasons, aladydivine exposes problems with OOB’s flagrant white privilege.

The Argument for Realism and Dangers of “Positive Thinking” - Yeah I admit it, I really hate the pushy positive-think-your-way-out-of-any-problem philosophy. It is so refreshing to see a healthy dose of reality injected into the discussion.

Why women have sex. – Holly takes a comprehensive look at an evolutionary psychologist’s reasons cited.

Whew, what a roundup. I’m sure there’s more…

A non-eventful doctor appointment

10/10/2009 at 12:45 pm | In Uncategorized | 1 Comment
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If ever I needed assurance that I’m getting better overall, in spite of the ocassional setbacks, then it comes in the form of gynecologist visits.

I’m not happy to have to return to the gyno – it takes up time, causes major anxiety, and usually happens only if I suspect something is wrong. But so far this year when I do go in, it’s definitely overall much easier (and less painful!) than it was a few years ago.

I went in to screen for infections yesterday – with so many resistant infections over the summer, and with some questionable feelings still in my vagina & urethra, I’m starting to reach that point where I don’t know what “Normal” is anymore. And “Normal” is good. Or so I’m told. I won’t get the results of the infection screenings back till next week. If I’m healthy, the wait won’t matter. If I still have an infection, then it’s mild enough for me to manage at home in the meantime.

I was so anxious about going though. Too many painful exams in the past. Too much “Pass the buck” by doctors who didn’t know what to make of me.

The anxiety remains in spite of the fact that most of my gyno exams lately have been nothing to write home about. The results of the exams have been, sure, but the time in the stirrups – surprisingly non-eventful.

Yesterday’s exam was no different. I did communicate the fact that I haven’t dilated in a few weeks for fear of re-infecting myself, and I asked the doctor to use a smaller speculuum. She did.

So when she went to insert the speculuum, I still expected it to hurt, but instead it felt like…

…Not much, actually. I think I still cried out a little in anticipation of pain but that old pain just didn’t happen. I think I felt *something* in there but I was thinking, “That’s it? That’s all? Oh man I’m gonna ask to use a smaller speculuum forever!”

Since it didn’t hurt, I was able to relax and the doctor took the samples before I knew what was happening. Then it was over. And I still wasn’t hurting.

Huh. That wasn’t so bad… Maybe next time I won’t have to be scared at all. I may have reached a breakthrough.

I know that I’m always going to face questions from others about the treatments I used to reach this point. Somewhere, someone is going to question me and my doctors on our motivations for doing what we did. Alternative medicine, hormones, surgery, dilators, physical therapy… Pretty serious stuff. Sometimes potentially risky.

Yet I’m still seeing some significant, measurable results here, in different contexts – not just in sex. Maybe next time I get my period I should try a tampon?

What I chose to address the vulvodynia and vaginismus may not be right for everyone, and the choice must be left to each individual. I can not advise on a course of action. So far, for me, I think my choices were right for my body and mind.

P.s. I blogged this from a mobile device – does it show?

Healthcare and Vulvodynia

10/06/2009 at 7:56 am | In Uncategorized | 1 Comment
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As we speak the US is embroiled in a health care debate. President Barack Obama is pushing for health care reform in 2009, although there’s been backpedaling on the public option. Town hall meetings are degenerating into heckling & squabbling by attendants. There are a lot of questions & concerns about what health care reform really means. As of the beginning of November 2009, the health care reform is still pending and still splitting opinions.

Health care reform in the US is a big deal, because right now, not everyone has access to adequate health care. In the US, most insurance is provided through employers. Of course, not all employers offer health insurance benefits. And if health care reform is passed, a major goal is to get more people covered while reducing the high costs associated health care – or the high costs associated with a lack thereof.

One of my concerns about health care reform in the US is how it will impact sexual & reproductive health, the domain in which vulvodynia and other pelvic pain conditions are usually classified. As far rights directly related to reproduction and abortion in particular, it’s looking grim. My hope is that patients with pelvic pain conditions will be covered adequately as well.  This may not seem like the most pressing issue, since, frequently, sexual health problems will not be directly responsible for death. There are some definite exceptions, notably AIDS, and cancers.
For a few moments, I feel guilty thinking about sexual health in light of other deadly, catastrophic illnesses…
But then I remember that it’s not fair to minimize the very real suffering & misunderstanding that I and other pelvic pain patients go through. And I remember how hard it is to convince others, including doctors, of how very real it is & how difficult it can be to get an effective level of care.

What would my life be like if I did not have insurance? What if I was not able to seek help? Where would I be? What would I be doing right now? Would I have been able to complete college? Find & keep a job? Would I still be in pain right now? Would I be able to sit? Would I still be in the same romantic relationship I have been cultivating for almost a decade?
What new challenges would I face, if I were less privileged?

Vulvodynia and other pelvic pain conditions – pudendal neuralgia, interstitial cystitis, lichens sclerosis, even vaginimsus (any of which can overlap with various other health problems including but not limited to fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, etc) – these conditions can spill over into other areas of life besides sex. For many, it’s not just sex. These are chronic pain conditions.
The pain experienced with daily life and/or sexual activity can eat away at your vitality & chip away at your mental & emotional health. Your employer might have to make special accommodations to help you get through the day when you’re in pain. How do you explain to your employer what part of you is hurting, when that part is so taboo? If you miss work due to pain you can lose your job, or you might have to “Voluntarily” leave it. If you have a relationship or want to have one then you can be faced with nagging questions about how healthy your relationship really is if you aren’t having the dominant form of sex. When your doctors can’t or won’t help you and things become desperate, you become prey for unscrupulous snake-oil peddlers.

Vulvodynia and other pelvic pain disorders don’t necessarily have to be expensive to live with. There different treatment options available, which vary in their price and individual interactions for patients. But for me, and a lot of other women I’ve talked to, living with vulvodynia is expensive. Sometimes prohibitively so.

According to the Vulvodynia Survival Guide, 62% of vulvodynia patients had income over $50,000 – not because greater wealth increases your odds of developing pelvic pain, but because greater income means greater access to doctors and care. (And, as these were self-reported figures gathered from vulvodynia.com, greater income also meant internet access.) (Glazer, 33).  And Dr. Glazer further warns, if you don’t have insurance, or your insurance company sucks (like mine did,) you could wind up spending thousands of dollars on treatment out of pocket (72.) The NVA is currently conducting research on how much this pelvic pain condition costs.

And in my experience, there are a lot of costs associated with vulvodynia…

You have to find a doctor who is prepared to deal with you, and that means spending time searching one out. Not all gynecologists and doctors are created equal; far too many still dismiss pelvic pain & dyspareunia as “All in your head.” Others don’t keep up with current research and still have never heard of vulvodynia and related pain conditions. Others have heard of these chronic pain conditions, but do not feel confident in their ability to offer you relief, so they will refer you instead to a specialist – who might live miles & miles away and be out of your insurance network (if you have insurance.)
So finding a health professional who will work with you means spending time calling around  and using the internet to find a competent doctor, and then using gas & travel money to get to that doctor.

Then, getting to that doctor can be a hardship depending on where you live and what resources you have at your disposal. I’m lucky (or more likely privileged) because I live in a fairly urban area, so I can get to New York City where my specialist works with relative ease.
But what if I was living in a rural area where gynecologists and specialists are miles away? What about people who have to drive for hours or possibly even book a flight to get to the doctor of their choice?
Would I face struggles finding care if I were living outside of the US?

Then, chances are your doctor works something similar to a 9-to-5 job, Monday through Friday. If you work, and your schedule is also 9-to-5 Monday through Friday, that means you have to take time off work just to get to the doctor. Hopefully your job offers sick or flex time to make up for lost income. Hopefully if your job doesn’t offer you sick or flex time, they won’t fire you for your absence.
And, since this is a chronic condition, sometimes accompanied by other chronic health problems, there’s a pretty good chance that one visit to the doctor won’t be enough. No, you’ll have to work it into your schedule to see your doctor multiple times, especially if you’re experiencing something acute, like a pain flare or a vaginal infection. Or else you’ll still be in the process of seeking out a competent, experienced doctor who can help you, and in the mean time, you’re stuck with someone who is ill-equipped to handle you, dragging the process out even longer. If your pain isn’t responding to whatever treatment the doctor prescribes, then you might have to return at a later date to let switch plans or follow up.

Not only that, but not all doctors take all insurance plans, if you have insurance. Some specialists don’t take insurance at all – the paperwork hassle of getting reimbursed at a discount isn’t worth it, so patients have to pay up front, potentially screening out lower income patients. If you do have insurance, you might be able to get reimbursed directly through your insurance company if you keep meticulous records and submit a claim directly, but, then you have to wait. And wait. And wait for insurance to review the claim and make a decision. Oh but wait they can’t review the claim because according to a telephone representative, they never received it. So you need to re-submit it and wait a few weeks while the process starts over again. Then after calling the insurance company, holding for up to 1 hour before getting to talk to a human being, and finally speaking to a surprisingly unprofessional representative, you find out you’re still getting nowhere because the claim went to the wrong department, or the insurance company needs paperwork that has been previously submitted, or that the doctor’s office has that you don’t have. So maybe you can get that extra paperwork together & submit it in hopes of getting some reimbursement for the cash that you had to outlay at the doctor’s office, meanwhile you have other bills to pay.
Then, finally, weeks later insurance gets back to you and either rejects the claim outright or sends you some piddling reimbursement that’s nowhere near what you actually had to pay. Thus you have to start the appeal process which is just as agonizing and time consuming as the first claim.

And, in the US, healthcare still isn’t a right. Even if you go to an emergency room where you theoretically can’t be turned away, the hospital is obligated only to get you stable. So even if the hospital gets you under control temporarily, whatever problem is underlying your symptoms could still be left lurking under the surface, given free reign to continue causing problems.

In the US, most people who have health insurance receive it as a benefit through their employers. So if you lose your job or your employer cuts health benefits, you could find yourself between a rock and a hard place. You may still be able to purchase insurance through a COBRA program – but this can be expensive, especially if you need to cover health care costs for your family.

And, if you are living with a life-threatening or chronic condition, you could lose your employer-provided coverage, or be ineligible for private insurance later on, due to pre-existing conditions. If you’re living with something that is expensive to treat, you could go into bankruptcy due to medical bills. These bills can become quite substantial.

I’ve been tracking my vulvodynia-related health care costs since this whole mess started, and I want to share what it’s like for me, living with and spending money on vulvodynia. I keep meticulous records for tax purposes. I don’t even own a home, don’t have a mortgage, and yet somehow I racked up enough health care costs to allow me to itemize on Schedule A.

For tax years 2007 & 2008, I know exactly how much money I’ve spent out-of-pocket for insurance and treatments for vulvodynia & pelvic floor dysfunction, to within +/- a few hundred dollars (I can’t deduct over-the-counter herbal & dietary supplements, cost of health-related books, etc.) I have to estimate for tax year 2006, since I didn’t itemize that year (I was just starting to seek out treatment.) And I have to estimate for tax year 2009 since I haven’t done my taxes for this year yet.

In 2006, I estimate that I spent $2,500-3,000. I was still covered on my parent’s insurance plan for most of that year, and I was just starting to seek treatment, so there were multiple doctor visits & tests involved.
This was the year I started the alternative medicine, which I kept up even in later years. The acupuncture, homoepathy, chiropractic. Alternative medicine is a long-term treatment, meaning it can take multiple visits just to see a small improvement. Each session ran $65-$100 after insurance, depending on which insurance policy I was on. You could buy a prepayment plan from the acupuncturist’s office, which would give you one or two “Free” visits, but you’d have to pay up front a few hundred dollars to do so.
The homoepathic treatment wasn’t covered by insurance at all.

In 2007, I spent $11,500.00. That year I had to start paying for my own insurance instead of being covered on my parents’ plan. The biggest expense was the surgery, at about $7,000 plus facility fees & an anesthesiologist. All out-of-network.
How much would you say a vagina is worth? Because according to my insurance company at the time, it’s only worth $1,000. That is all insurance ever reimbursed me for surgery, even though the surgery was medical in nature rather than cosmetic (not that I would personally judge anyone who does undergo purely cosmetic surgery,) pre-approved, pre-certified, all paperwork submitted. But no, since there’s no charge code for a vulvar vestibulectomy it has to be classified as “General female surgery” which could mean anything – and the insurance company interprets it to mean something that conveniently doesn’t cost them as much. Even though I try to explain to them with paperwork & journal articles & charts & diagrams what it actually is and why I needed it.
It should be noted here that the insurance debacle described above (when I was talking about how hard it can be to find a doctor & get care,) that was my insurance debacle.  I fought & continue to fight for greater reimbursement but every time I call or write a letter I get a major runaround. It is absolutely exhausting dealing with insurance companies.

Another notable cost that year was the $500 dildoes.

A few weeks after surgery, my surgeon wanted me to start dilating.
It is possible to have dildoes covered by insurance – if they are for a legitimate medical purpose, and if your insurance company isn’t jerky. So my doctor prescribed a set of five solid glass dilators.
They are heavy, beautiful and effective… and expensive, at over $100/each. Although looking online, it’s actually pretty normal for glass toys to run up to that high of a price.

Unfortunately for me, my insurance company refused to pay for the dilators, so I was out another $500. I’m still not understanding why they rejected that claim.
We could have used a different dilator kit. In retrospect, I could have bought a plastic kit, or a set of silicone dildoes. And, I did eventually buy a plastic dilator set anyway, which was cheaper. But first we tried it this way.

In 2008, I spent $5,400. I was still paying for my own insurance, and started physical therapy.
That’s another long term treatment. I saw initial results soon after starting, but it still took many PT sessions before I the mysterious pelvic pain decreased, and many sessions before I started to learn how to consciously control my pelvic muscles.
Each physical therapy appointment cost me between $30-$70 out of pocket, depending on which insurance plan I was on. And I was going in for physical therapy between once or twice a week.

So far for 2009 my estimate is so far I’ve spent $2,000. This is my least accurate figure for now since I haven’t done the tax return yet.

What do I spend the least on?
Drugs.
I take very few drugs. What do I have, a few refills on oral Diflucan (just in case,) and an expired prescription for oral Valium. When I need antibiotics, I get antibiotics, generic ones, for usually a few bucks. The most expensive antibiotic I was on in the last two years was the Levaquin for $40, since that was a brand-name. I need some prescription strength ibuprofen after surgery and some topical estrogen gel before that.

Now some will say that it’s worth it to be off of medication, since all medicine can carry side effects, and side effects can be dangerous.
But it is expensive to be drug-free. Expensive enough so that there are times where I have questioned whether it’s really better for me, long term, to be leaking out so much money that I could be investing towards a home and retirement. Is it worth it to be drug free? I could have probably saved several thousand dollars if I only needed to pop a pill every day.

At what point would the cost of medication match and then exceed the costs of being drug-free? How much time would have to pass, how many pills would I have to take, before the lines cross, and the drugs would cost more than what I’ve already spent? Or would the side effects of medication eventually be too strong for me to handle? Or would I feel so stigmatized for having to take medication that I would eventually cave in to peer pressure & stop using them?

I want there to be a nice, easy oral pill I can take to address pelvic pain. Right now two options I have for prescription medication for pelvic pain are tricyclic antidepressants and anti-seizure medication – both used off label.
This is why I don’t understand why there’s so much backlash against Big Pharma for researching female sexual dysfunction. Supposedly Big Pharma has been trying to create a female version of Viagra for years, but I’m still not seeing it. Where is it? I don’t feel threatened by Big Pharma, because Big Pharma has very little interest in me. I want to be able to take a pill and make it all go away.
But pelvic pain must not be a very lucrative area of business. So much for Big Pharma being interested in female sexual dysfunction.
Nonetheless, one of the very first graphics I see on the New View Campaign website is an anti-pill picture. This terrifies me in light of the fact that I know other women who really do need prescription medication to express their sexualities with minimal (or preferably, zero) pain, as well as women who need prescription medication just to make it through the day because the pelvic & genital pain is so pervasive. Or because there is an active vaginal infection and not all pelvic pain patients can handle vaginal gel medications, so they will use oral pills instead.

Still, that’s several thousand dollars on my healthcare since 2006. And that’s just the out of pocket costs.
Now imagine how much more the actual billing was for. Imagine all the costs I didn’t see, but that my doctor offices did when they were filling out paperwork for reimbursement.

Now imagine that I had to ask my parents to help me pay for some of these big bills, since as a poor college kid, I couldn’t have afforded a lot of these treatments without their help. Because that’s what happened.
I have insurance.
It just doesn’t work for me.
But I can’t afford not to have it, on the off chance that something major and unpleasant does happen.
What would it be like if I didn’t have the support of my parents at those critical moments? What if I had my own family to raise? What if my job didn’t offer health insurance? What if I lost my job and my health benefits with it? What if I tried to apply for COBRA coverage and couldn’t afford the monthly out-of-pocket expenses? What if I couldn’t get back to work because the pain was too much? What if I couldn’t have afforded the treatments I picked? What if I had a health condition that could be potentially lethal?

What would it be like if I my bills were high enough so that I eventually had to weigh the cost of insurance premiums with very little return on them? At what point would I be faced with the choice of saving a few hundred dollars a month on insurance premiums, gambling on the chance that I will not develop a catastrophic illness or get into a major accident?

There are so many what-ifs. The way health care is set up right now, it is already rationed. For all the fears of government intervention determining who gets care, socio-economic status, health insurance and its costs already do that for many families and individuals. Pre-existing conditions keep others off the insurance rosters. So far, I’ve been largely spared from the worst financial backlash when health care fails. I’ve got enough coverage and savings (so far) so that I haven’t been forced out of work and into bankruptcy.

But it’s more grim for others. Something has to be done, to provide better access to healthcare, for more people. I don’t know if the public option is still fesiable, with all the information & misinformation & voting & not voting & all – but I’d like very much for a public option to be feasible. A few links of interest, to explain what’s going on, what’s at stake, and what you can do: Health Care for America Now! MoveOn.org and yes, even AARP.org. I’m only in my 20s and I read AARP bulletins.

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