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.

Found via Vulvar Vestibulitis Support Network and His and Her Health Forums:

Producers at a national television show are looking to interview married women who’ve been diagnosed with vulvodynia in the last six months. They’d also like to hear from single or married women who experience chronic painful sex but haven’t been diagnosed. If you fit these criteria and are willing to share your story on national television, as soon as possible, please send an e-mail to chris@nva.org with the following information:

- Name

- Age

- Are you married or single?

- If you’re married or in a relationship, is your partner willing to be interviewed? – What symptoms do you experience? When did they start?

- If applicable, what condition have you been diagnosed with? When did you receive a diagnosis? How many health care providers did you visit before being diagnosed?

- Have any treatments helped you? Is your vulvodynia better or worse? – How does vulvodynia or painful sex affect your life?

- How has the condition affected your sex life, marriage or relationships?

- Daytime phone number and e-mail address

- Current photo (please attach)

- Statement that you give NVA permission to forward your story and contact information to the show’s producers. Please try to limit your summary to 1-2 paragraphs.

No yet word on which television show is producing this episode, when we can expect it to be aired, or how it is going to be handled.

Dear internet, I have returned from some scheduled downtime. During my off-time, I had many adventures with my boyfriend, and did not check my e-mail or blog on a regular basis. As a result of this break, I returned home feeling refreshed, renewed & restored…

…and buried by work that piled up in my absence, and new content in my RSS feeder online!

Needless to say, I’ve got quite a bit of catching up to do. We’ll get to that in a few moments. First, to bring interested readers (all what, 8 or 9 of you,) up to speed with what’s been going on with me,

I picked a very good time to take a break in terms of not letting too much work pile up on the job or at home. The weather where I went was pleasant, the crowd levels minimal, lots of things to see and do, and my boyfriend and I had some private time together. We had plenty of activities to keep us busy and amused, and we ate so much good food… I really could not have asked for a more perfect vacation.
Well, actually, there is one thing that could have made our time together even better. A certain piece of jewelry presented to me with a certain flourish would have made my year… but apparently it is not time for that yet. So be it then.

This time around, although we’ve done it before and have very few opportunities to try this, we did not attempt to have intercourse. Nope. Did not even try it. We both wanted a pressure-free, totally relaxing time together. Intercourse is this whole big production for me and we’re both so new at this. Attempting intercourse can be nerve wracking. It’s definitely worth it when it happens, but it’s not too far off the mark for me to say that for us, the act of intercourse is about as intricate & requires about as much rehearsal as a Broadway musical.

That’s not to say that we didn’t have sex though – we had enough quality sex & intimacy to keep both of us satisfied. No pain on my end, however it looks like that Bartholin’s gland cyst is going to keep coming back whenever I spend a lot of time aroused (as I often do when I’m with my boyfriend.) The cyst is already starting to decrease in size and firmness on its own, so I’m not worried about it right now. But I know that sooner or later I’m going to need to have that gland looked at. Some day it will likely require a more complex and permanent intervention than warm compresses & sitz baths.
One thing at a time. Worry about that later when the time comes.

While my boyfriend and I are comfortable with the quality & quantity of sex we enjoyed while on break, unfortunately the rest of the world is not satisfied with it.

Upon my return home my family started in on me about whether we’d had sex – by which they mean intercourse. On one hand, it’s great that I have their support – they want me to have a happy, healthy sex life. My mother & sister especially supported me when I was recovering from vulvovaginal surgery. On the other hand, it’s not great that their support can often turn into invasive nagging & pressure to perform. “Did you do it? How was it? That’s all?! Aw K, you gotta put that vag of yours to good use while you can!”

Even my boyfriend had some family pressure regarding sex, or rather pressure to not perform. Even though he is an adult, and even though we’ve been together for years, his family still does not approve of our relationship. His family certainly does not want him sleeping with me, and so he returns home to a different kind of nagging.

Why is sex so heavily policed by peers & family?

Anyway, now that I’m back online, I mean to return to regular blogging about feminism & sex & female sexual dysfunction – and all the work I left behind before my break remains to be done. Those draft posts don’t write themselves. Even the “Fluff” needs more tweaking.

It’s probably going to be a few days yet before I’m all caught up with my RSS feeder, and even longer before I find time to pick up & read some books on my shelves. Unfortunately for me (fortunate for the interested & patient reader though,) more articles & editorials & blog posts were written about FSD in my absence. I must have picked a bad week to take off in terms of blogging. I won’t be able to put together a weekly blog-link roundup for awhile longer, yet I still want to bring attention to a few pieces you may have missed:

For instance, that Nation article I had such a big problem with a few weeks ago – it’s been joined by yet another anti-FSD cohort. So someone (probably me) is going to need to sit down and analyze this article & see if it contains any troublesome (even if well-meaning) implications and dismissive language (hint: it does.)

Meanwhile, there’s a new drug for female sexual dysfunction on the horizon, and I’m sure it will set the feminist blogosphere abuzz once word spreads – so far Violet Blue is on the ball, a sex therapist sees the potential benefit for patients, and a sex educator takes a comprehensive look at it, including the history of FSD. This drug, Filbanserin, is a type of antidepressant – it’s an SSRI rather than a tricyclic. (Tricyclic antidrepessants, in low doses, are sometimes used to treat pelvic pain, including sexual pain.) It won’t work like Viagra, which increases physical response but doesn’t necessarily instill a craving for sex in and of itself. Filbanserin is designed to increase libido.
This drug actually sounds like it would be less appropriate for me than Viagra, as I am comfortable with my current libido. My main problems in sex are with this physical body of mine.
So I may need to talk about Filbanserin, Viagra, et al soon.

Regarding vulvovaginal surgery (labiaplasty in particular – always with the labiaplasty to the exclusion of other genital surgeries and/or surgeries done without aesthetics in mind,) we have some Fightin’ Words:

Angelica Kavouni, a cosmetic surgeon who carries out labioplasty, said it was wrong to “terrorise patients” with suggestions of long-term consequences.

Them’s fightin’ words! Strong, unequivocal language – you may be wondering what sort of anti-surgery/surgery awareness tactics could possibly terrorize a patient about to undergo vulvovaginal surgery, whether the surgery is for purely cosmetic reasons or not. I may be inclined at a later date to tell you some examples of tactics which yes, even I would consider over the top and counter-productive.
Also, if Kavouni is a surgeon, I wonder why the editor did not include “Dr.” or “Ph.D.” in the title of her name… she does have a medical degree, yes?

Brie is keeping up with Private Practice, the ABC television show which a few years ago aired an episode about a patient diagnosed with vaginismus and vulvodynia. The show now includes a recurrent theme of a female sexual dysfunction clinic, but it is not doing a very good job of actually talking about FSD.

There’s a LOT of news going on outside the realm of FSD that I’m trying to stay abreast of. One of most frequently-spotted topic in my RSS feeder is about US health care reform, including discussion of the Stupak amendment. I’m also overwhelmed & appalled by the amendment itself – this is bad news for women’s health. Health insurance reform, but at a very high price. One particularly good post on the topic I’ve seen is over at Female Impersonator. I, too, speak legalese (although possibly not as fluently as Jenn.) This isn’t the only news topic going on; I’ve seen posts about the Carrie Prejean slut-shaming scandal, the Ft. Hood shooting, and more. Then there are the posts that are not necessarily political in nature, but are interesting invitations into bloggers’ personal insights.

And that’s just for starters. Stay tuned – we’ve got a lot of work left to do.

In one of his recent agency blogs, Dave Trott describes how he would show Mike Greenlees, his Chief Exec at GGT, ideas for new campaigns.

On one occasion, they were pitching for a beer account.

Dave wrote a campaign and showed it to Mike.

Mike said, “It’s a very good beer campaign, I’ll have no trouble selling it. But it doesn’t scare me. Can’t you do something that scares me?”

At roughly the same time as this would have been happening, I was working on the Kimberly-Clark account at FSD.

It was the commercial and industrial washroom products part of Kimberly-Clark.

How exciting does that sound?

The truth is, it was the best account in the agency to work on.

It won shedloads of awards.

And it helped shift shedloads of paper tissues and towels.

The reason for this was not just very good creative work.

But a great client.

K-C knew how dull their products were.

And that somehow they needed to make them sound interesting.

So their Marketing Director at the time told the agency not to present any work to him that didn’t immediately make him feel nervous.

In fact, his exact words were, “Don’t show me anything that doesn’t scare the shit out of me.”

Pretty much what Mike said to Dave.

They all knew that, as Trotty says,  “Consumers aren’t interested in the subtle differences between ad campaigns. If it isn’t different, it won’t stand out.

And if it doesn’t stand out, it has no chance of working.”

Especially if the product, in itself, isn’t that remarkable.

The only chance we had of making industrial toilet paper ads stand out was by coming up with ideas that made the client feel initially uncomfortable.

More than that – he actually wanted to feel scared of what he saw.

Because he knew that, if he felt apprehensive about running the work, in all probability, it would get noticed.

And he was right. It did.

The campaign was a massive success.

There are still a lot of dull products about. Probably more than ever.

If not dull, then samey.

If not samey, then at the very best, only subtly different from the competition.

And that goes for a lot of the advertising that’s used to promote them too.

Campaign after campaign that wouldn’t say boo to a goose.

Safe, comfortable, seen-it-before stuff that huddles together timidly for protection.

You can smell the fear.

But it’s a different kind of fear.

This is the fear of taking a chance.

Not the terror of being dull.

Sarah and I decided on a whim to go to Zanzibar for a long weekend. We got on the first bus out of Mombasa, 6:30am, and headed to Dar es Salaam, Tanzania. It was a long, bumpy ride that somehow Sarah was able to sleep straight through. It was quite impressive and I was extremely jealous. I am sure at some point I was able to catch a few flies, but for the most part I was left to entertain myself.

After 9 hours, we finally arrived to Dar es Salaam, and our adventure began immediately. As we disembarked from the safety of our coach, we were instantly accosted by a herd of taxi drivers more than willing to take us anywhere we needed. I cannot even begin to tell you how overwhelming it was. Sarah and I were unprepared for this line of attack as we felt quite ambushed. I tried to stay focused and finally made my way back to the coach conductor to find out the best way to get to the ferry, if we needed a taxi, and how much should we pay. He looked at me, then down to his watch, and informed us that by the time we got to the ferry we would have missed it. However, one of the drivers was eavesdropping and said that he “knew a shortcut” and could get us there in time. I honestly doubted him, but it was worth a chance, plus we figured that we could get the next ferry since it was only 3:30pm – surely there is another one going to Zanzibar this evening.

We arrived to the ferry building just a few minutes later to find out that it had left 1 minute before; we could see it just a spit away. So here was my big mistake. You know what they say about assumptions… well I made the assumption the ferry and coach would have coordinated schedules. Ummm, they did not, and therefore, we did miss the last ferry. Needless to say, we started looking for a hotel in Dar for the evening.

I am not going to bore you with all of the details, but let’s just say it was a hysterically disastrous weekend with nonstop comedy of errors, but of course we found humor through the whole experience. From power outages in both Dar and Zanzibar to endless rain upon our arrival to Zanzibar, we seriously could not stop laughing from the absurdity of the situation. When we did make it to a beach, not only was the tide coming in so there was about 3 inches of beach, but then it started raining again. Luckily my partner in crime, Sarah, is easy going and can roll with the punches, or else the whole experience would have been much different. Plan D was enacted, and we found the nearest bar… I mean cafe.

Remember what I said about assumptions, well, I did it again. One would think that there would be a coach terminal or ticket area that would be easily located within a city – but of course not in Dar, and not this weekend. We seriously walked for miles, asking everyone we could, including the herd of taxi drivers. No one seemed to know where we could purchase our return tickets to Mombasa. Finally, I realized that I had my old ticket and luckily it did have the local office number printed on it. I called, verified the address, examined our map and began heading in the right direction, so we thought. After quite a distance, we realized we could not find the cross street, even though it was on our map. We asked a taxi driver and fortunately this time he was able to take us there, at least within a block.

Now remember, this is one of those weekends where if something can go wrong, it did. As we were walking toward the ticket office down a busy street, out of nowhere I got mugged (no weapon, just snatch and run). This guy tried to grab my purse but ended up with my phone and case, which is my lifeline here in Mombasa. So, I did what every other woman would do in this situation, I turned, dropped my bag, kicked off my flip flops and ran after him. (Note that I dropped my bag that has my passport, blackberry and other electronics and all of my cash. Obviously this was not well thought out, but fortunately nothing happened to the bag.) As I was running, I kept yelling “Stop him, stop him!,” and shockingly as the guy was rounding the corner, a couple of men grabbed him. If I would have been in the US, I’m not sure anyone would have even paused, much less stopped him. The next thing I know I am in the center of a very large crowd, asking them to check his pockets and yelling at the guy “How Dare You” while shaking my finger at him. (I still find this humorous, like that is really going to teach him a lesson – “how dare you?” Really, I couldn’t come up with something a bit better than that?)

The thief was terrified and literally shaking and continued to deny he had it. One person finally handed me the phone case, but the phone was still missing. They ended up pulling him into the middle of the street and talking to him in Kiswahili, so I have no idea what was being said, but I can definitely tell you the thief looked petrified and for good reason. Since this situation happened, I have heard story after story about how the people do not always rely on the police to sort out these situations. They will take matters into their own hands when the thief is caught, which now I understand why they had taken this guy into the middle of the street. If the thief is lucky, he is just beaten, but there are times it is to the extreme where I even heard of a guy that was caught, encased in tires, doused with petrol and burned alive. So, after the fact, I now realize the severity of the situation.

I am still in the middle of the crowd, but Sarah has now made her way through to me. She asked me what he took, and said that we were still trying to get the phone back.  She said that a gentleman had found it and handed it to her. Apparently, the crook either threw it or dropped it when he snatched it, so luckily for him nothing was found on his person. I grabbed the phone and held it over my head and notified them that it had been found. The men holding the thief asked me if I had received everything back, or was I still missing something. I reassured them that I had everything back at this time, so they released him. I yelled out to everyone, “Asante sana, I guess that’ll teach him to mess with the mazungu!” They all laughed. In the end, it was quite funny, okay maybe not for the thief, but hopefully he learned his lesson.

I have to say that I appreciated the help that I received from the locals. It was quite refreshing to see how everyone came together to help a foreigner. Maybe I am wrong, but I am quite sure that if I would have yelled for help in the U.S., no one would have come to my rescue. Obviously, this story turned out great since the thief was released and I got all of my stuff back, but I only wish that we could find some middle ground in both societies.

Needless to say, we purchased our return tickets, found our hotel, and were able to leave the next morning without incident.

SOKO KIJANI QUICK UPDATE

I am seeing so much progress with the market. We finally received the official certificate for the Self Help Group, Soko Kijani. We had a fantastic business seminar, where the artisans are just begging for more. We have started to build the new display tables, which hopefully will be finished before I leave. We have almost finished a new small banda (workspace) for Murage, the coconut jewelry maker. I have been working with all of the artisans on their hands-on presentations, which has been a lot of fun. They are quite entertained watching me try to do their craft. We have also recently purchased a camera. All of this is possible thanks to all of you generous donors. We cannot thank you enough for your support! Asanteni sana!

Thanks to all of you once again, and a few new additions! xoxoxo

• Roberto Giannicola
• Bob Meyers
• Ronnie Unger
• Garland & Suzanne Marshall
• Janice Schindler-Horvat
• Holly & David Gay
• Melanie, John and Hayley Vest
• Mark Fischbach & Tristin Green
• Beat Bossart
• Havens & Miller, LLC (Thanks Jason & Cristy!)
• Jackie & Harry Swank
• Chip Nelson
• Samantha Miller & Aaron Brown
• John Christiansen
• Albert Greene
• Chris Schauer
• John Lama
• Erik Jacobs & Melissa Marshall
• Keirsten Wingo
• Jeremy Taylor
• Greg O’Donnell
• Chris & Theresa Marshall
• Bryn Brugioni
• Andrea & Lee Marshall
• PK Wendelboe
• Catherine Hooper
• Deepa Prasad
• Kenny & Erin Werner
• Vivian & David Aizpuru
• Michele & John Wetteland
• David & Janet Tewhill
• Danny Abrahams
• Heidi Dickert

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…

Reactions to Sunday’s Helsingin Sanomat editorial

The Social Democrat parliament member Jacob Söderman has said that yesterday’s Helsingin Sanomat (HS) editorial is a warning that things are going very wrong for Swedish-speakers’ rights.

HS wrote yesterday that Swedish-speaking Finns’ concerns over their diminishing rights were justified. See previous blog entry for more details.

Söderman named the Centre party as the biggest villain behind recent decisions that have effectively reduced the ability to receive services in Swedish. Municipalities / Local Government Minister Mari Kiviniemi (Centre) received particular criticism for her attempt to ignore the concerns of both Parliament’s Consitutional Committee and the Chancellor of Justice with regard to assigning bilingual Karleby (Kokkola) to the unilingual Oulu state administrative district instead of the strongly bilingual Vasa. Both the Constitutional Committee and Chancellor of Justice has ordered that Kiviniemi arrange a report that compares the two options with regard to the linguistic consequences of such a move. Kiviniemi has tried to instead order a report that would only investigate the linguistic provisions that Oulu would be capable of providing.

The Swedish People’s Party (SFP) parliament member Ulla-Maj Wideroos has claimed in the light of HS’ editorial that “it is obvious that there is a hidden agenda concerning the Swedish language. The Centre party’s next step will be to adjust the parliamentary electoral districts to ensure that the influence of Swedish-speaking Finns is reduced.”

Wideroos also claims that the National Coaltion party (Kokoomus) and the Social Democratic Party (SDP) bear some of the responsibility for the current language climate, “Centre receives the power that the other two main parties give them”.

Söderman (SDP) states that in his judgement the Centre party has closed its ears to the requirements of Swedish-speakers.

The chair of of the Swedish assembly of Finland, Folktinget, Anna-Maja Henriksson (SFP) also points to Centre, but also others, “Centre has displayed a spectacularly nonchalant attitude for Swedish in the matter of Karleby, but Kokoomus have also helped them. With regard to the police district reform, the minister responsible was from Kokoomus.”

Wideroos (SFP) regrets the fact that there are today so few, if any, strong advocates of bilingualism amongst Finnish-speaking politician. She mentions former prime minister Esko Aho (Centre), former prime minister and parliament speaker Paavo Lipponen (SDP), former president and Nobel peace prize winner Martti Ahtisaari (SDP) and former minister Olli-Pekka Heinonen (Kokoomus) as politicians previously active who understood the importance of bilingualism and acted to further it.

Wideroos welcomed the fact that HS has now acted in defence of bilingualism. “This is exactly what we need. Finally, the country’s largest newspaper  has said precisely what we have thought for a long time. This is of great importance, this will certainly be read by prime minister Vanhanen (Centre), opposition leader Urpilainen (SDP) and finance minister and party leader Katainen (Kokoomus).

UPDATE 27/10

Prime Minister Matti Vanhanen (Centre) has denied that there is any reason for concern over Swedish-speakers’ rights. He told reporters from the Finnish News Agency FNB/STT that he had not had time to acquaint himself with the Helsingin Sanomat’s editorial but  that “we are one people with two languages and both languages ought to be equal.”

“Ought” to be, Matti? Actually, I think you will find it is “must be”. Time to take out the law books and read the constitution.

For more on our prime minister’s difficulties in understanding reality, read this entry on the Jees Helsinki Jees blog: Vanhanen to Swedish-speaking minority: “Your grievance against the Finnish mainstream isn’t justified” « Jees Helsinki Jees

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.

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.

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.

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.

Before I launch into the rest of my shpeal about grassroots development, I suppose I should stop to explain some of the work I’ve been doing at Iguhu and the focus of my current project within the hospital. From day 1 of my work, it was clear that Iguhu is in the midst of monumental restructuring. Having recently been upgraded to District Hospital, Iguhu is now in the process of accepting its new responsibilities while waiting for government money to upgrade its facilities and equipment to accommodate them. What results is a vastly overworked staff, underfunded projects, and a lot of unrealized visions for the future. This, of course, left quite me quite a lot of space to work with, and absolutely no defined direction in which to take my project. So I decided to start at the top.

From my first day on the job, almost every staff I talked to was quick to identify at least 3 major projects the hospital was purportedly working on. Land expansion; building new wards; building a canteen; buying an ambulance; hiring new staff; buying new equipment; drilling a bore-hole…the list went on the more people I talked to. When it came down to it however, the hospital was relying on the same government fund—the CDF (constituency development fund)—to support all of them. In addition, despite having waited for funding for most of these projects for nearly a year, there didn’t seem to be much in the way of an effort to speed up the process. Advocacy was certainly not a word in the hospital’s vocabulary…it was more of a sit-and-wait kind of thing. So, I decided—3 days in and knowing essentially nobody in the community who could help me—that the hospital was going to learn to advocate for itself.

Sitting down to tea with Mama one afternoon that very first week, I soon discovered that I was sitting next to the answer to my problems. As a social worker, Mama Joyce literally lived to mobilize the community. In addition to being connected to basically everyone of importance (and well-respected to say the least), Mama also informed me of a local government fund dedicated to serving the community’s needs. The next LASDAP (Local Authority Service Delivery Action Plan) community meeting to decide on a project would convene October 16^th, and I soon adopted LASDAP as a key feature in my new agenda.

Over the next 2 weeks (make that the last 2 weeks), I spent my time organizing staff meetings to prioritize the hospital’s needs, researching the LASDAP process, and identifying ways to mobilize the community in support of the hospital. The way I saw it, the hospital served the community, and while the hospital remained so underfunded and under-resourced, the hospital’s problems were the community’s problems. My argument had a lot of sway with Mama J and her network, and I soon had countless community leaders mobilizing citizens to come support the hospital at the October 16^th meeting.

At the same time, it was discovered within the hospital that a scandal in the larger community had cut off the hospital’s water supply, and workers were now forced to walk down to the river and back with large tanks to supply the hospital’s water needs. Even overlooking the lack of running water in the faucets and toilets, the supply of water was literally limited to the amount volunteers could carry up the hill—a situation that seemed almost comical when considering the number of people the district hospital had to serve every day. At least by identifying this particular caveat we were able to immediately unite the staff—and much of the community—on a prioritized project to pitch at the LASDAP meeting.  

My first two weeks of work were, of course, much too good to be entirely true. As in any story, there is always a bad guy, and the next part tells of the downside to grassroots development: the weeds. Considering Kenya is ranked among the top 3 most corrupt nations in the world, it’s surprising that corruption didn’t enter this story earlier on. But we knew it had to happen sometime, so…[enter corruption].

 *note, some of this part has been edited so as not to accuse any specific individuals of corruption or implicate the hospital or FSD in any of my personal observations*

Last week, excited about our rapid progress, the hospital team (me, Dr. Bomji (the hospital Director), and Kimani (the Hospital Administrator)), sat down to discuss LASDAP and our project idea with the experts–unnamed representatives and local government officials. In addition to grossly under-stating the funds available from LASDAP (I know how to do my research thank you very much) and misquoting the timeline, budget, and entirety of the process, we soon learned that government processes, despite any and all good intentions to focus on “transparency,” are about as transparent as a brick wall. Without going into excessive details of how last year’s fund was turned into a private hotel business run by local officials, its safe to say we were butting heads against quite a bigger beast than i originally planned on tackling. Oops.

Despite the change of course, I was certainly not about to let this particular incident discourage the larger plans of the hospital to connect with the community. In fact, since that meeting, I have made every effort to redouble our mobilization. Armed with Joyce (have I mentioned yet she’s not someone you want to cross?) and her network of community leaders, teachers, preachers, piki piki drivers, social workers…the list goes on, we now have a grassroots army growing behind us in support of the hospital’s projects. What happens on Friday remains to be seen, but the larger goal of the cause–tapping into the power of community initiatives and grassroots mobilization–has already planted the seeds for success. Now I think it’s time for a little bit of weeding.

Shida, my adopted brother, with dinner

Written Oct 8

Discovery of the day: Kenyan physiology

Today, I killed a chicken. It was traumatizing, terrible, wonderful, and delicious all at once, not to mention extremely educational. In fact, had I come to Kenya just a few years back, I may not have had failed physiology, and may still be miserably working my way through the pre-med track at Dartmouth. Aside from learning every minute bone and organ in the body (and the local beliefs associated with eating each one), I also learned that Americans are a) incredibly wimpy and b) incredibly cheated every time they eat pre-gutted rotisserie chicken from the store. For starters, we lose about ½ the mass of the chicken by not eating such things as the head, legs, heart, gizzard, kidneys, lungs, liver, testicles, intestines, and bones (yes…bones). We also miss out on the extremely educational benefits of learning how all of these systems work, while slurping guts out of each and every one of them. I couldn’t quite muster the nerve to gnaw the tongue out from the still-intact chicken head (although it apparently is a delicacy), but I’m certainly getting there.  Happy birthday dad, I did this one for you.

proof that i actually did it

proof that it was delicious. at least walter thought so

so did mama j

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?

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.

Looking back over my last post, it has come to my attention that I made it sound as if my Kenyan luck is always turning sour. Quite to the contrary, there have been many occasions in which the threatening clouds overhead have cleared without warning, leading to lovely (and often hilarious) surprises. Last night for example, after my feather-ruffling exchange getting home, I spent the remainder of the night with tears of laughter in my eyes, treated to theater-quality entertainment by my host mama and gasping for breath on the floor.

Since I haven’t properly introduced her as of yet, I suppose I’ll take this time to give a brief ode to Mama J. Strong-willed, very chatty, stubborn, and full of laughter, Mama Joyce is one of those people that makes you wonder if women need any more empowering.  This one certainly doesn’t. Imagine a relatively huge (whose only goal in life is to become huger) woman an affinity for discipline, things fried in massive quantities of oil, laughter, strong opinions, tea (more like gallons of boiled milk and sugar), and drama. A police-school dropout (the fitness requirements were a little too much for a woman of her stature), she is living proof that physical punishment can go a long way in running a family—even the dogs don’t dare step out of line. Well known and loved throughout the neighborhood from her work as a social worker, her 12 siblings, and her habits of stopping to chat with actually everyone, Mama J would make a great cartoon character if Pixar happened to be looking for new material.

Generally opposed to anything that could be considered exercise (which generally hinders her goal of one day being too huge to walk), Mama J’s favorite activity (after taking tea and downing multiple loaves worth of bread and butter sandwiches in one sitting) is role-play. Pausing for breaks for her cackling laughter to fill the room, Mama J’s impressions of just about everything are enough to set anyone off, lighting up our home and all of the visitors we entertain every night. Insistent that her home isn’t “primitive” (her word for households that follow traditional cultural rules), and emphasizing the liberty of rules in her house, Mama J frequently catches her breath by lying beached whale style on the floor, encourages throwing chicken bones (the ones she doesn’t eat) on the floor, and loves dressing up in drapery and tablecloths to emphasize her points (see below).

As you can probably tell, life with Mama J is always an adventure. Crossing my fingers that I never do anything that incites her wrath (I’ve only heard her talk about it in passing, and seen the evidence on her cat, who is currently lame), I think I certainly lucked out. Too bad she won’t fit in my suitcase home.

The whole fam. From left to right: Baba Muliro, Mama J, and Irene

The crickets are back from Jamaica, and they brought suitcases stuffed full of FS news. It may be fall, but the add-ons are popping up like spring daisies all of a sudden. So, what happened this past week?

Team From Down Under Goes Up & Over

Perhaps craving a break from the great south land, OZx released another in their line of freeware FS scenery add-ons recently—oddly enough, covering Italy this time. “Tuscany Complete” is a photo-real terrain patch that drapes a large block of the coastal Italian region of Tuscany with aerial photography. Also included are the islands of Elba, Pianosa and Capraia, and all underpinned with high-detail terrain mesh courtesy of the meshmeister himself, Holger Sandmann.

So far, I’ve only had a chance to sample Pisa and its immediate surrounds, but this looks to be a definite winner. You definitely can’t beat the price!

Lightning Strikes Twice

Given its popularity, I’m surprised there haven’t been more P-38 Lightnings done for FSX. David Copley did a brace of them back in the FS9 days, and they were very nicely done. Finally, not one but two teams have turned their attention to the legendary “fork-tailed devil”, giving it the full treatment.

First out of the blocks was Sky Unlimited’s “Legacy of the Sky” package, which includes the P-38J, P-38K, and P-38L variants, with a P-38E photo recon plane thrown in to round things out. The detailing looks good, there are a number of paints included, and for the next couple of days the introductory price is a surprisingly low $17.95. For Lightning lovers, that’s pretty hard to pass up.

In the opposite corner is Milviz/Flight Sim Developers’ P-38J model, whose release is imminent. While it doesn’t cover as many variants as the Sky Unlimited version, the Milviz/FSD model seems aimed at more hardcore detail fanatics (possibly with more hardcore computers as well). The screenshots they’ve shown are astoundingly well done, with excellent detailing and carefully crafted textures. I’m a fan of baked-in shadowing, and their ‘pit really caught my eye. Another feature they’re including is both wartime and modern civilian VC configurations, something I wish more warbird makers would do.

Sibwings Bird Dog Beta Updated

Among the handful of people who even know they’re working on it, the Sibwings Cessna L-19 Bird Dog is one of the more anticipated releases in a long while. You’ll remember them as the team behind the gorgeous SAAB Safir, an under-appreciated masterpiece if you ask me. I’m fortunate to be on the Bird Dog beta team, and was delighted to get word of a new beta version release this week. After downloading it and tearing around Tuscany, all I can say is wow. These guys are devs after my own heart. Look at this artwork!

The newest beta includes three versions; standard wheeled, one with skis, and a floatplane. Each has a distinctly different cockpit layout, and all are equally stunning. Sibwings aren’t the most communicative bunch with the greater FS community, but it looks like the project is steaming ahead. I predict this little beauty will definitely make waves when it’s released.

Say Again, Please

This week also brought news from Robert Cezar, the developer of the “It’s Your Plane” audio expansion. This time, he’s tackling one of the biggest pet peeves I have about sim flying: the immersion-killing keyboard interactions with ATC. Microsoft did a pretty good job of simulating radio communications between pilots and controllers, in my opinion. But no matter how good the phraseology is or how natural the voices sound, having to respond to ATC by pressing a keyboard number just isn’t very real.

SuperATC aims to change that. It’s a speech recognition program that attempts to parse your voice replies to the FSX controllers and makes the ATC menu selection for you based on what you said. For instance, when ATC clears you for takeoff, you can just say “Cleared for takeoff” instead of pressing the “1″ key. In addition to the default ATC, SuperATC purports to work with the popular Radar Contact add-on as well. Robert’s work in voice recognition for FS deserves more attention than it gets. Did I mention that SuperATC is free? That’s reason enough to trot over to his site and give it a go, I think.

Albatros Reviewed

If you’re not already a fan of Nick Churchill’s site, Screenshot Artist, get yer butt over there and check it out. Nick is one of the most talented virtual photographers around (his work is seen in almost every high-end add-on’s publicity these days), and staff writer Ian Pearson is a thoughful and thorough reviewer. The latest article takes a critical look at Lotus Simulation’s groundbreaking L-39 Albatros. Gee, wonder if they liked it?

Breaking News! A2A’s Cub Update 1.1 Released

As I was typing this, I got word that A2A Simulations’ Piper Cub version 1.1 expansion (you read about it here last week) has just been released. I challenge you to a Cub race this weekend. Paddles only!

Written on 9/30/09

After just three days of work at Iguhu I already feel like I’ve worked there for months. I have now spent a good amount of time with most of the staff at the hospital, discovering how the different departments work with each other, the incredible skills so many of the staff have, and some of the challenges that arise from working in a public hospital that is both understaffed and underfunded.

This past summer, the Iguhu Health Center was upgraded to District Hospital, and along with that change came quite a lot of responsibility. While Iguhu is a relatively large complex for a Health Center serving only the immediate community, its new position in the District requires a pretty large expansion of resources, facilities, and capabilities. Unfortunately, while the hospital waits for funding and resources from the government to fulfill its new role, it must continually face issues of inadequate space and resources while trying to meet the needs of its patients every day. Just from working with the staff this week, I can tell why so many people are willing to wait so long to be seen by Iguhu doctors when they can travel to other facilities down the road: the quality of the care and the personality of the staff really do make a difference. My job for the next 8 weeks is to use the incredible resources, teachers, and mentors I have already at Iguhu to create sustainable solutions for some of the challenges they are currently facing.

Although I’m still very much in the planning stages of the projects I intend to complete in my time here, I have already discovered the incredible value of relationship-building done the Kenyan way. We were well warned before we started our internships that “Kenyan time” can be rather frustrating for Americans who have been brought up to value work efficiency over everything else. According to the work ethics ingrained in us since Kindergarten, timeliness, hard work, and efficiency come first, often at the expense of relationships with colleagues and business partners. Until this week, I was certainly of that belief as well.

While I twiddled my thumbs for 2 hours my first day of work, waiting for the rest of the hospital staff to show up (and learning that “8-5” really means “10-4”), I was initially shocked that a health institution that was theoretically a 24 hour endeavor could be so inefficient. What about the patients who showed up at 8am to be served? How can one overnight nurse deal with an emergency situation in the middle of the night by herself? Blinded by my disbelief that the director of the hospital shows up to work 2.5 hours “late,” I was missing the point. Yes, there are certainly inefficiencies in the system that can be worked out and improved on. But the underlying emphasis on relationships—stopping to talk to your neighbor on your walk to work, taking a phonecall in the middle of dinner—is what really defines the Kenyan work ethic. It wasn’t until today that I realized how important that really is.

It started when, true to Kenyan form, I decided to pick up a phonecall in the middle of breakfast (its incredibly rude here NOT to pick up your phone, so your family or coworkers will look at you nervously if you ignore a call during a meeting or meal). At the other end of the line, Rowland, a Kenyan friend of one of my good friends from high school who was in Kakamega this past summer (hi Kremer) was inviting me to dinner at his house, although I had never met him. Accepting the offer after asking permission from my host mama (and soon realizing that everyone knows everyone here in Kenya and she knew the house), I wound up at a lovely dinner party with 4 other San Franciscans and 2 of Michael’s other close friends from the summer. In addition to a wonderful meal and great company (“joining the family” as friends of friends do), I also managed to blindly stumble across the solution to one of my biggest problems at work: the computer network.

The intern working before me with FSD at Iguhu had set up a computer network for the hospital, complete with a database that could register patients, track their diagnoses, appointments, payment records, and prescriptions. It was a really great system and a great idea—until the network hub crashed and the system went down. By the time I arrived at Iguhu, the staff had given up on computer training and reverted back to the hand-written system they had beforehand (inefficient, but trustworthy). Assuming that I was as technologically talented as my predecessor, Dr. Bomji, the director of the hospital, assigned the network to me as my first big project—and I was terrified. Not only did I not have any knowledge of networking itself, I haven’t even been able to manage to keep my own laptop functioning while I’m here much less a whole hospital system (apologies for the slow updates to the blog, it depends which days my computer decides to turn on).

As I was discussing my project goals at dinner, musing about where I could find a computer savant in Kenya to walk me through computer programming, the San Francisco half of the room got quiet. As it turns out, one of the members of the dinner party (make that my friend’s friend’s husband’s brother) works for Google and is one of those people who just “gets” computers. He was in the area for one day only before taking off to Tanzania, and offered to stop by the hospital to check out the network at see what he could do. The next day, 3 hours after he arrived, the entire system was back up and running. Shazam. My first project (admittedly one I thought would take at least 3 weeks to figure out), done by the end of day 3.

And that’s when I realized the value of the Kenyan way. Back at home, I may never have picked up the phone during a meal, might never have met known about the dinner, and would never have met friends of friends’ computer-savvy and incredibly generous relatives. Back at home, I would have toiled through setting up the network on my own—admittedly with American determination—and wasted weeks of time I could have spent doing other things. When it comes down to it, it really is about relationships, not what time you get to work or how busy you look every minute of your workday. It’s about building the network (or repairing it in some cases) and working together towards a common goal. I may not have the direct skills to reprogram computers or the resources pay for extensive construction and renovation projects for the hospital’s future, but someone does. You just have to know how to look in the right places.

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.

“I’ll tell you what I do. I work with men who have sexual dysfunctions as their partner and I practice sex with them and I practice social skills & I practice communicating & I practice teaching them how to love people.” ~Maureen Sullivan in Private Practices: The Story of a Sex Surrogate.

I finished watching a documentary on sexual surrogacy. Private Practices: The Story of a Sex Surrogate, directed by Kirby Dick – the same man who directed (among other things,) This Film Is Not Yet Rated. It was filmed during the early 1980s – right at the beginning of the AIDS crisis, and long before Viagra and mainstream access to the internet.

Sexual surrogacy is an interesting topic to me, in large part due to its rarity as a therapeutic tool. How many people have even heard of it?

The first exposure I had to the idea of sexual surrogacy came from (of all places,) an erotic novel. As the setting in that novel was the late 1700s, and the book was fraught with grammatical & factual errors & stretchings of the truth, I didn’t think much of it.
Then, Anne Sprinkle touched upon it in her book, Spectacular Sex, in describing how a physically disabled person was able to have a sexual experience with the aid of a surrogate. Huh, maybe that erotic novel author was onto something.
Then there came a Feminist Review of Private Practices.

Wait, there’s a movie about this?

I’ve heard of sex therapy before, in terms of talk therapy & couples’ therapy. You go in, talk to a counselor, psychologist, or psychiatrist, and work through your thoughts, emotions & physical problems as they relate to sex. It shouldn’t matter if you have a partner or not; the therapist should be equipped to handle you (your mileage may vary.) You might be given homework assignments to finish before your next session. And I’m personally familiar with dilators and physical therapy as hands-on healing tools for vulvovaginal pain. (Dilators & PT are surprisingly unsexy treatments. Effective for me, but clinical almost to the point of sterility.)

Sex surrogacy is something a little different.
So what is it?

This is a real thing. The same organization that Maureen Sullivan was president of at the time of filming, is still around – the International Professional Surrogates Association. If you watch the film with the director’s commentary on, you’ll hear Kirby Dick and his interviewer talking about how surrogacy was gaining popularity as a treatment for sexual dysfunction, until the AIDS crisis hit and derailed it due to safety concerns.

As described on the IPSA’s own website, sex surrogate therapy consists of,

In this therapy a client, a therapist and a surrogate partner form a three-person therapeutic team. The surrogate participates with the client in structured and unstructured experiences that are designed to build client self-awareness and skills in the areas of physical and emotional intimacy. These therapeutic experiences include partnerwork in relaxation, effective communication, sensual and sexual touching, and social skills training. Each program is designed to increase the client’s knowledge, skills, and comfort.

The website goes on to list some problems that sex surrogacy can address and Wikipedia includes painful intercourse as one area. Although sex surrogacy is described as appropriate in some cases for both men & women, the impression I got from Private Practices, Wikipedia, and IPSA is that it puts a stronger focus on men than women. I get this impression because all three resources explicitly point out conditions that men experience – notably erectile dysfunction & premature ejaculation.

One of the big questions I’m still left with is, whether or not this counts as a form of sex work. There can be exchange of sex for money, and intensive therapy can be expensive. You don’t need to have any special qualifications or degrees to be a surrogate, although you should go through training with IPSA. The legality of surrogacy is dubious. And indeed, a text block at the beginning of Private Practices notes that the film would likely raise moral & ethical questions – questions that the IPSA attempts to address with its Code of Ethics.
However, According to R.J. Noonan, PhD., sex work and surrogacy should not be mixed up. Much of a surrogate’s time is going to be spent doing non-sexual activities & coaching. But then, is this distinction being made because sex work is so stigmatized? Would there be a distinction if sex workers were more respected?

The movie asks that rather than fixating on these questions, the viewer should focus on the lives of the subjects being filmed.

So how is the film, anyway? Is it worth a rent from Netflix? Does it answer any questions? Who might be interested in the movie? Well,

The first thing that struck me before the content was the quality of the film itself. The DVD is of a good quality, not a lot of extra features, but it runs smoothly. However the cinematography itself is definitely showing its age – it’s old.
It’s old, and it’s a documentary, so the director didn’t have millions of dollars to work with. The quality of the film (regardless of the content) reminds me of an old home movie or a soap opera. If you watch the movie with the director’s commentary on, Kirby and his interviewer, Tonner Barclow (might not be spelling that right,) say that this film could be an “80s time capsule” in and of itself. Everyone is wearing clothes that you would have definitely seen in the 1980s (The commentary includes a line like, Maureen’s blouse looks like it came from a set of the Golden Girls.) Home decor (Maureen works from home) is circa late 1970s & early 80s. Big hair abounds.
The sound quality is mixed – you can definitely hear everyone speak clearly, but you can also hear airplanes flying overhead outside of the houses.
The worst quality anything though, is the music. The music used in this film is awful. It’s described as ‘Avant garde,’ but it sounds like 1980s Synthesized Stock Music you could have bought in bulk and used to produce mass quantities of After School Specials (although in the director’s commentary, Dick says he knew the music arranger personally.) It hurts my ears. Luckily there’s only a music overlay for like 3 or 4 parts.

The second thing that stood out to me first was how the film conflates sex with love. You can have both at the same time, and perhaps more often than not that is the case. But, sex and love can exist exclusively of each other. You do not require an emotional connection to have sex; the film made it sound like sex = love.
However the director’s commentary notes that the surrogacy movement grew out of the Free Love movement, so “Love” may mean something different from what I’m used to in that context.

The film follows Maureen Sullivan and two men over the course of their months-long therapy, set in Los Angeles, California. Both patients are referred to Maureen through their therapists. We do not see how the patients & their regular therapist came to the conclusion that sex surrogacy was an option. We do not see what probing questions must have been asked. The director paid for Kipper & John’s therapy in exchange for allowing it to be filmed. (Did either one of them expect to see a revival of the film after 25+ years? Are they even still alive? We do not know.)

The first client we meet is Kipper, a 25-year old student & virgin who is so shy around women that he cannot form meaningful relationships with them. No, really; you may think that he’s just saying that so he can come across as a stealth-creepy Nice Guy, but I genuinely believe that he was afraid of women. He shows discomfort around Maureen even as she tries to lower his barriers through talk & touch therapy.

In the director’s commentary, Kirby & his interviewer question if Kipper was  gay, and trying to “Cure” himself through surrogacy. The directors note here that that’s not really an appropriate use of surrogacy (and it probably wouldn’t work.) Kipper, as it turns out, has an older brother who strikes me as a real “Bro” type, while Kipper is much more introverted. We don’t learn much else about Kipper’s life and why he is so shy around women. He did not spend much time with his mother, and, it seems that he did not receive much affection from her as a youth. Indeed, when Maureen and Kipper finally embrace on her couch, her touch is more Maternal than sexual, or even friendly.

We do not see Maureen’s first session with Kipper (so says the director’s commentary,) so what you see when we first meet Kipper really cuts to the chase. It starts off right away with touch therapy. (We do not see any questions of consent discussed; hopefully surrogate & patient have an understanding of consensual vs. non consensual touching & respecting other people’s boundaries in a non-therapeutic setting.)

The second patient is 45-year old John, a newly divorced teacher after 20 years of marriage. John’s primary complaints are feelings of sexual inadequacy (exacerbated by mean comments made by his sex partners,) erectile dysfunction & premature ejaculation – although as the film goes on we learn that his problems likely go deeper than that.

John may be overestimating the importance of sex & sexual performance, to the detriment of every other area in his life. Going into the patient/surrogate relationship, he automatically assumed that he would fall in love with Maureen, and she with him (Entitlement much?) While he thought poor sexual performance was the primary reason for his divorce, his ex-wife appears on film to state that no, that wasn’t one of her real concerns.

It seems that nobody likes John. His ex-wife doesn’t like him and calls him a “Slob.” In the commentary the director says he engaged in pathological hoarding at home, and even Maureen calls him a “Cheapskate.” Maureen is somewhat open about her discomfort with John – when he says things that make her uneasy, she says so, framed in the larger context of therapeutic benefit. Yet he has two happy daughters at home – who nonetheless chide him for seeking out younger partners instead of women his own age.

The director filmed some of Kipper & John’s individual therapies. Both clients spend time nude with Maureen in front of mirrors, talking about their bodies. Both clients undergo touch therapy; Kipper’s looks more like sensual massage & sensate focus to me, while John’s consists of Maureen training him how to avoid premature ejaculation by masturbating him (out of frame.)
This is probably the most explicit and uncomfortable scene in the whole movie.
But, this was also back in the day before Viagra, so it’s not like John could have just popped a pill and problem solved.

Maureen also lets both patients explore her body and genitals sexually, trying to show them some techniques (with mixed results.) What’s really odd to me here is that, Maureen spends a lot of time talking about her vagina, but no time talking about her clitoris. Why is that? If you are trying to teach pleasurable technique on a female bodied person, shouldn’t you at least speak the word, “Clitoris?” Or “G-spot?” Or something like that?
On the other hand, I must also acknowledge the wide variety of what gives women pleasure. Perhaps Maureen enjoyed vaginal stimulation more than clitoral?

No intercourse was caught on film, and, if I’m understanding the director’s commentary correctly, there wasn’t any with either of these clients anyway.

One of the most revealing scenes does not involve patient and client at all. Kirby brought Maureen, her brother and father together for the climax of the film. Maureen and her brother confront their father about what Maureen’s career is (The quote at the beginning of this entry is taken from that scene,) and about how witnessing thier father’s abuse impacted their lives. Maureen and her brother both witnessed (if not experienced) physical abuse by their father. He reacts to their confrontation with a blank stare. I don’t think he was ready to admit that what he did was wrong and how long-lasting the effects of witnessing this abuse was. Maureen candidly admits that part of her motivation in becoming a surrogate, was to seek out what love is supposed to be like. For Maureen, surrogacy is a learning experience too.

The film leaves a lot of questions unanswered, but I suppose that is the nature of the work. After completing any therapy, I’m sure some patients stay in contact while others lose touch. In this case, Kipper & John eventually lost touch. We learn at the end of the film that two years on, Kipper has had some dates, John is in a relationship and Maureen has a boyfriend. After that we don’t know what happened to John or Kipper. They may still be out there, posting on FaceBook or eating a snack even as we speak. The director’s commentary reveals a little more about Maureen, as he stayed in contact with her.

Other questions unanswered though, include the practical application of surrogacy for – pretty much any other case. For what kinds of dysfunction would this be most appropriate? How have Viagra and other medications, the mainstreaming of sex toys, the internet, internet pornography, and laws impacted business? How would a surrogate address female sexual dysfunction, including sexual pain? What steps do surrogates take to minimize the spread of sexually transmitted infections? How does this compare to mainstream sex therapy? How would you find a therapist who is prepared to refer you to a surrogate, or do you seek one out without a referral? What makes a good surrogate? Do surrogates face the same dangers as sex workers? If you have a sex partner, how do you communicate a desire to seek out a surrogate? Is it like starting an open relationship? Is this therapy covered by insurance?
I’m sure there’s more questions even I haven’t thought of.

I think a lot of the therapies Maureen used could have been executed within a mainstream sex therapy setting, without a surrogate. Kipper may have been able to benefit from getting a professional massage at a spa before letting Maureen (or any other partner) give him one. That could have been a homework assignment to address social anxiety around new people, anxiousness about being touched, and relaxation. Professional massage with a licensed therapist isn’t the same as sensual or sexual massage like Maureen was engaged in, and therefore may have been easier to start with. Likewise, if Maureen had had access to the internet, she may have been able to direct John to helpful websites to help address his social skills and premature ejaculation. And self-reflection exercises – like standing in front of the mirror and talking about how you feel about your appearance – that can be done at home alone, with paper & pencil.

As for the movie itself, it’s definitely one of the more… unique movies I’ve seen, even for a documentary. It would be worth watching if you have an interest in sexuality, sexual dysfunction (especially male sexual dysfunction… strong emphasis on male sexual dysfunction,) or possibly sex work.
For everybody else, it’s definitely catering to a niche market. If you have a nosy family, you might even have to hide the DVD from prying eyes. And, because of the sexual content, it may be triggering to those with a history of sexual abuse.

One final note: I would not consider this to be porn. If you rent this expecting it to be porn, you’re probably going to be disappointed. There’s sexually charged scenes, but … it’s… rarely sexy. The final line in the director’s commentary sums it up best: if you’re looking for porn, this is more like “Emotional porn.”

So if you’re looking for a good comedy, thriller, romance, or anything else, look elsewhere.
Basically, only watch it if it sounds remotely interesting. All others, save your time & money.

written on Sept 26

So I’m officially moved in at home with Mama Joyce. Despite all past descriptions (according to Damaris, “loud”, to Peter “very talkative”), I have absolutely loved getting to know my new mother for the next 8 weeks. She certainly lives up to expectations and is very chatty (which is great for explaining what is going on when I am perpetually confused). Although she currently lives technically alone, the house is always bustling with visitors—townspeople coming to Mama J for advice, children coming to pay to charge their phones (hers is one of the few houses with electricity), or some of her 1000s of extended relatives and neighbors. Just between the walk from her house to Iguhu, we ran into at least 20 people that she knew and she of course introduced me to all of them. In Kiluhya. (what a lovely surprise that after a week of intensive Swahili training, I have to learn an entirely new language to understand what’s going on here!)

At any rate, staying in a homestay is quite the adventure. Irene, one of the HIV orphans (now 30) Mama Joyce took into her home as her own, has been cooking and cleaning for us , and is wonderful and way too polite. She made a delicious beef stew with rice tonight, and I can tell that I will certainly be well fed in this house (I think Mama Joyce had 3 dinners). The two mamas (Irene is now married so she counts as a “mama”) took turns asking me questions about what I can cook, if I’ve never used a wood stove, and what people in the US could possibly eat since we don’t have ugali. Quite a few more interesting cultural exchanges later (I quickly took on the role of mediator when Joyce and Irene insisted I judge which of them were fatter), and it was time for bed (gotta love that Kenyan bedtime).

Because I was pretty  prepared to experience a slightly different lifestyle sans running water (and therefore toilets), you can imagine my absolute confusion when Mama J insisted that I not go outside to use the pit latrine in the dark. Apparently I’m allowed to pee inside of the house on the floor as long as I aim towards the hole in floor and wash it down with water after I’m done. ?!?!? really? I snuck out to the latrine with my headlamp when she wasn’t looking because I absolutely refuse to believe she meant that I’m allowed to pee on the floor.

Well I’m off to bed despite the early hour. As I found out from asking about her Sunday rituals, church starts at 7 which means we have to leave here by 6:30 which means I have to wake up at 5. Efficiency is not a word in Swahili or any Kenyan language, so of course we have to leave 2 HOURS to get ready to go  to church in the morning because everything just takes that long. At least we’re aiming to be on time, right? Peace out, or mulembe as they stay in Kiluhya (still my only Luhya word), I’ll write more tomorrow.

9/23/09

Three days later and I feel like the Kakamega I wrote about on Sunday has changed so much. For starters, we’ve practically learned the entire Swahili language by now. Nina (a particularly unhelpful name considering the entire language is made up of ni’s and na’s) is a fabulous teacher who has managed to introduce us to the basics of pretty much the entire language. After she leaves tomorrow we will just have vocabulary lists of nouns and verbs to memorize and we’ll basically be fluent (well, kind of).

We spent the day today traveling to Peter’s village of Shikokho, visiting a local clinic and touring the various aspects of the infrastructure that Peter had a hand in helping to bring to the village. We had lunch at Peter’s mother’s house (a huge and wonderfully delicious meal), which was my first glimpse at what a mud hut really looks like. For such a modest dwelling and her 80some years (and fascinating kitchen, made and covered entirely by mud and cow dung) we had such a gourmet and delicious meal…I was incredibly impressed. From our little tour around Shikokho I realized a number of important things.

1. Peter is one of the most amazing men I have ever met. In addition to running the Kakamega site as the Program Director, he essentially brought FSD to Africa, scoping out the sites in Mombasa and Uganda, finding all the home stays, making connections with local community organizations, and expanding FSD’s mission. He also has a personal relationship with every intern who has ever worked with FSD, oversees all of our individual projects, and still leaves time to rebuild Shikokho. Over the past few years his projects have included bringing electricity to the town, helping to rebuild and expand the roads to the main highway, and working to stabilize and centralize the village’s water source with electrical pumps. He has such an experienced view of development and speaks of what most would consider a lifetime’s work as if it is merely a hobby.
2. Prior interns at FSD have tackled incredibly ambitious projects and achieved pretty incredible things. While we continue to hear talk of “kenyan time” and setting realistic expectations for what we can achieve, the work I’ve seen done in a mere 8 weeks is pretty amazing. Dawn, a past intern back in Kakamega visiting, showed us the work she did in a clinic in Shikokho, and the list of accomplishments seemed infinite. Her professional assessment of needs and creative solutions yielded a number of successful projects (and an equal number of unsuccessful ones), which is definitely nerve-wracking as I think about starting work next Monday. Arjun, the intern working for the Iguhu Center (where I will be working) this summer, accomplished a number of great things for the Center as they took on a new status as a District Hospital. I hope I can follow in his footsteps well and continue to make useful improvements!
3. I want Noelle, one of the clinicians at the Iguhu Center, to be my new best friend. We had a “meet and greet” with representatives of our host organizations yesterday afternoon and I absolutely loved the Iguhu representative. She is young, incredibly nice, very friendly, and very encouraging. I can’t imagine she’s more than 5 years older than me yet she does such amazing work for the hospital and is engaged to be married in December! By the end of the visit we were introducing each other as “dada” (sister) so I can’t wait to start work at the hospital and meet the rest of the staff!

The only other main discovery of the day is that my stomach isn’t made of iron after all. Although I have fallen in love with ugali and chipati and all the curries and sauces that everything comes with, my stomach has recently decided otherwise, which is putting a damper on my ability to down chipati like its my job. I’m sure I’ll bounce back soon, but given that my roommate (from the Ivory Coast) already thinks she has malaria, I could be in for an interesting few weeks ahead. We’ll see what happens.

Mulembe!

written on 9/20/09

After 2 full days of travel just to get to Kakamega, I’ve discovered that jetlag is no match for exhaustion:  even after crashing into bed shortly after dark, I had no trouble sleeping the clock around to wake up at 9:30 this morning. How delightful. Although I’ve only had one full day here, I’ve already fallen in love with Kakamega town (although our site team was quick to brush it off as ‘the honeymoon period of cultural adjustment’).

After a lovely hot breakfast this morning at the hotel (even sausage tastes better here), we headed into town on bodabodas (bicycle taxis) to explore, get oriented, and pick up a few of the essentials: Kenyan shillings, internet, and lunch. The town is much bigger and greener than I expected—its very refreshing to have the equivalent of a “city” consist of entirely lush earth tones rather than the drab greys we’re so used to in the US. Even for a Sunday, there was quite a bustle of every day life, markets, and businesses. Particularly the highway, which I’m sure I will soon come to fear as the cars, bicycles, pedestrians, trucks, matutus, and cows all seem to share the road equally ranging in speed from 1 to 60 miles an hour.

We start our first Swahili lessons tomorrow, which I am incredibly excited about because my two words so far—Jambo and Asante (Hello and Thank you)—are helpful, but don’t get me very far. I’m also hoping to pick up a charger for my cell phone, an internet stick (since my homestay will be a few kilometers too far away to make the trek to the internet café regularly feasible), and some fruit. I’ve also heard there is a local track around here and would love to explore that area tomorrow as well!

Well, given that its almost 10, its hours past my Kenyan bedtime and I should probably retreat to my palace of mosquito netting…

After being here several months I have noticed some nuances of the Mombasa culture that I would like to share. I think the US would be a much better place if they would adopt these:

Chiropractors beware: If you felt you could pack up and come to Kenya for a new practice and make a killing, think again. I have never seen such perfect posture! From the elderly to the youngest child, perfectly aligned posture in everything they are doing. Shoulders back, butt tucked, and back aligned, and not in a military type stiffness either. You do not see them slouching in front of the computer, or at a dinner table. I have not noticed a difference between the wealthy or the poor either. I am not sure how you are taught this, but they should definitely give lessons to most Americans.

Who needs a stroller or a backpack? The only time I have seen a stroller was in Old Town with one family that was on a tour, wazungu (plural form of mazungu) of course. It was even the big fancy off-road kind. They stuck out like one would driving a yellow Hummer in Marin County. All children are either carried or are walking. Backpacks are rarely seen around town either, unless you are a tourist. What I usually see is a woman with a large bag of goods to be sold balanced perfectly upon her head while a child is strapped to her back, Baby Bjorn style, but with a piece of fabric perfectly and securely tied. Please note that these women are carrying baby (sometimes two) and goods for miles, not just to and from an automobile. To carry at least 50 lbs on their head, would definitely keep your spine in line.

Fashion Police new policies: Prints of all kinds and colors work here. The louder the better and they are not shy about mixing patterns and colors as well.

McGyver would have failed his training in Kenya. Who needs a paperclip when you have a strand of hair? The ingenuity here is impressive. One of my favorite examples is when I was in Ngomeni (One Love Island) and we were purchasing some fish from one of the fishermen/boys. He was on a “surfboard” made out of small pieces of Styrofoam taped and wired together in a surfboard type design. The pieces were no more than an inch thick and maybe a foot in length, but so strategically arranged and aligned that it held him high enough out of the water that he could properly fish like all of the other surfboard fishermen/boys.

Seinfeld would be relieved. It is absolutely acceptable to pick your nose at anytime if necessary. This can take place in the middle of a conversation, walking down the road, or even while giving a speech at an organization. Sometimes they use the “itch-pick” technique, but usually it is the “dig deep and find it” method. It is also quite acceptable to burp without apologies at anytime. Some of you reading this may say, “Oh how crude,” but really you are thinking, “Man, I wish I could get away with that here.” If only we weren’t so uptight.

Who needs utensils? Eating with my hands actually took some practice. There is a certain technique to it that makes it more efficient than using utensils and actually a lot more fun. However, the most important is washing your hands immediately before and after you eat. In many places someone will come around with a bucket, soap and a water container to allow you to wash your hands at the table. If this is not offered, then there is a sink with soap available in close proximity. I have to admit, I still am not adjusted enough to eat rice with my hands, but there is something called ugali or sima which is similar to grits, but thicker. You actually get to ball this up in your hand (using only one hand), flatten it out into a spoon-like formation and scoop the vegetables up with it. I usually eat way too much of this only because I am having so much fun. I realize this sounds quite silly, but maybe it is because I am the uptight American that even eats her frozen Snicker’s Bar with a knife and fork (another Seinfeld reference). Okay, maybe not the frozen Snicker’s, but I do eat ribs with a knife and fork. Well no more! When I return, I vow to eat ribs with my hands no matter how messy they are.

Cash is KING! Now this is actually one of my favorites. This is strictly a cash society. Not only do most establishments not accept credit cards, but most Kenyan’s (at least the ones that I have met, so of course I am generalizing) do not even own a credit card. Now, of course, the touristy places do accept credit cards, but you will usually pay a premium, or you can negotiate a lower price if you do use cash. Even the cell phones here are mainly based on prepaid cards instead of signing up with a monthly contract. They even make it extremely convenient to purchase the “Top-Up” cards once you have run out. What a novel idea, America, spending only money that you actually have and not creating a massive debt! Please, please adopt this one!!

Well, that is it for now. Just a few nuances of the Kenyan culture that I thought you would find interesting and appreciate, at least I have. I promise I will be better about updating my blog again.

I am still receiving several donations, so if you haven’t yet, but meant to, you still can. At this time, over $4,000 has been raised! If your name does not appear below, but thought you had contributed, please notify me immediately. Also confirm with your bank account that it has been charged. The direct link is located at http://bit.ly/VGzhU. You have to first fill in the amount you want to donate in the “Donation Amount” and then click “Update Total.” A new screen will appear without the check and the updated amount will be to the right. You can then fill out the credit card information. For some reason, Visa and Mastercard seem to be the easiest to go through, but it does also accept American Express and Discover.

I would like to thank all of my peeps again for contributing to my organization. Smooches to all of you:

• Roberto Giannicola
• Bob Meyers
• Ronnie Unger
• Garland & Suzanne Marshall
• Janice Schindler-Horvat
• Holly & David Gay
• Melanie, John and Hayley Vest
• Mark Fischbach & Tristin Green
• Beat Bossart
• Havens & Miller, LLC (Thanks Jason & Cristy!)
• Jackie & Harry Swank
• Chip Nelson
• Samantha Miller & Aaron Brown
• John Christiansen
• Albert Greene
• Chris Schauer
• John Lama
• Erik Jacobs & Melissa Marshall
• Keirsten Wingo
• Jeremy Taylor
• Greg O’Donnell
• Chris & Theresa Marshall
• Bryn Brugioni
• Andrea & Lee Marshall
• PK Wendelboe
• Catherine Hooper
• Deepa Prasad
• Kenny & Erin Werner
• Vivian & David Aizpuru
• Michele & John Wetteland
• David & Janet Tewhill
• Danny Abrahams

I really cannot say it enough, but thank you thank you thank you for contributing. You really have no idea how much this means to me and how much it is going to help. Asanteni sana rafiki zangu!

One of my goals as I roam down the long, lonely winding road of female sexual dysfunction is to broaden my sexual horizons. Perhaps in so doing, I will no longer find myself on a road at all but in the middle of a more level playing field, with beautiful views to boot. In the mean time, I’ve exposed myself to new ideas about sex & sexuality as I go down this path. I have become more open minded than I was at the beginning. I recognize counter-productive advice and turn away from it even as I take comfort in good advice – it’s okay to have different kinds of sex besides intercourse; it’s okay to fantasize and explore safely; and it’s okay to make what would be considered “Foreplay” by most, into a main sexual act, so long as it pleases all parties involved. And, if you ask me, it’s okay to seek medical intervention when things are just so completely out of control that it impacts your quality of life. I know how that is.

One of the main themes put forth by Klein & Robbins in Let Me Count the Ways (the book has some problems but I get what the authors are trying to do,) is that, a lot of sexual anxiety is caused by culture’s (US-centric here, as that is where the book was published,) strong emphasis on intercourse as the end-all, beat-all sex to have. I’ve seen this theme of breaking away from an intercourse-centric view repeated elsewhere, including Anne Sprinkle’s Guide to Spectacular Sex. It is freeing to know that no, you don’t have to meet that arbitrary sexual standard. You don’t have to live in a box or a series of boxes. You can make your own sexuality up as you go along.

It’s a good theory. But in practice, it’s not always that easy…

In real life, over and over again, I come face to face with a depressing reminder – In spite of my best efforts, I am still “Doin’ it wrong” when it comes to sex.

This is not something my partner has ever said to me. This is not something that someone has said to my face in person (yet.) It is the message I receive from the media when it addresses you, plural, for not being able to perform intercourse frequently. Or, for those rare occasions when all the stars & planets are in perfect alignment & I can pull it off, it is still unacceptable to perform poorly. Do a bad enough job of sex, and word could leak out to all your friends or a late-night talk show. “Did you hear the one about…”

Most of the time, I am able to disregard the message of sexual inadequacy. For one thing, I know it not to be true – intercourse may be a rare treat for me, but there are lots of other sexual activities my partner and I are fine with. For another, if I believe that message seriously, I risk falling into the trap of sexual avoidance.

As described in The Vulvodynia Survival Guide, the sexual avoidance trap is what happens when repeated exposure to sexual activity – usually intercourse for vulvodynia patients – continues to be physically painful. Eventually the patient associates sex with unwanted pain. The patient’s libido can drop in response, and if you’re in a relationship, it can start to suffer. That pain-free partner probably doesn’t want to see the patient in unwanted pain & suffering either, but the taboos on having frank discussions about sex can lead to a lot of communication problems. Not all relationships will survive this (probably) unexpected upheaval.
Of course, if you’re actually living with chronic vulvar pain, you probably didn’t need me to explain that trap to you. You may have already stumbled upon it.

This trap is made even wider due to living in a culture that places such a strong emphasis on heterosexual intercourse as the one and only true “Sex.” It is as Dr. Glazer explains in The Vulvodynia Survival Guide -

All other forms of non-penetrative sexual activity are relegated to the realm of foreplay, which by definition refers to what people do to get ready for intercourse. With this common line of thinking, afflicted couples avoid “starting what they can’t finish,” as it were. This is a huge mistake (130).

Armed with this knowledge, I’m usually able to ignore negative or counter-productive messages about sex. What I do doesn’t have to be foreplay. Most of the time, I remain confident & eager to engage in sexual activity (at least, so long as my libido hasn’t crashed. And if it has crashed, so far it’s usually due to an infection or a major life event that demands my full attention anyway.)

But sometimes, the message gets through to me.

It’s harder to ignore when it comes from a trusted source.

This time, it didn’t come from Sex & the City or any other HBO television show. It didn’t come from a Jay Leno quip. It didn’t come from my partner as an insult. I didn’t read it in a magazine.
No, this time, the message that I’m still doing sex wrong comes from Evil Slutopia, a feminist/sex-positive/slut blog written by the Evil Slut Clique (ESC.)

Now, I was really enjoying Evil Slutopia; among other things the writers address the failings of Cosmopolitan magazine much like Holly of The Pervocracy does monthly. They talk about how, surprisingly, Family Circle magazine didn’t fuck up re: abstinence pledges. They wrote a scathing analysis of “Modest” fashion.
This is all right up my alley. I like this… these are good posts.

Then the authors took on a non-intercourse sexual activity and what is this I don’t even —

The post in question is described elsewhere as “Hilariously informative.”
I don’t see what’s so funny about it. I read it. I looked at it from a few different angles.
I must have a broken sense of humor on top of broken sexuality, for I fail to see the humor.
Or maybe I’m just too immature to get the joke. You’ll see where I’m going with this shortly.

At first, it doesn’t sound so bad – The Handjob Makes a Comeback. That doesn’t sound so bad, now does it? Innocuous enough. Maybe I’ll like this article too. A safer sex act that’s pain-free and always on my menu, but which has been the butt of jokes, is actually coming back into style? A sex act that is derided, becoming more acceptable & mainstream.
Yes, that is exactly what I’m looking for… acceptance. Less pressure to have sex the way other people tell me to, and so, deal with less anxiety & sexual insecurity.

Except that that’s not really what the post is about at all.

Upon closer inspection, it is clear that the authors feel that hand jobs deserve to remain the butt of jokes & that only immature teenagers engage in them for their own sake:

We mentioned that we didn’t believe anyone over the age of 13 actually still gave handjobs. We have long been convinced that the hand job was a dying art form, relegated to junior high school parties.

Imagine the authors’ surprise when commenters informed them that this non-intercourse, non-oral sex sexual activity isn’t as uncommon as they first thought. Intrigued, the ESC looked into available resources about handjobs, including a book dedicated to the topic, aptly called The Handjob Handbook. The ESC is quick to point out that the description for the book itself includes a line describing handjobs as the,

“lowly stepsister to the far more glamorous blowjob”.

However the ESC is not so quick to point out the very next line in the online description which says,

The authors of The Handjob Handbook think that’s unfair.

I have no doubt that the first bit about the “Lowly sister” line refers to society’s disdain for handjobs & masturbation in general, rather than the book author’s own views. The ESC even makes a statement to that effect,

In fact, men don’t even really need a partner for a handjob… A man can easily… um… take matters into his own hands.

You don’t need to have a partner for masturbation, no. So having partnered handjobs, or exploring male masturbation toys, is redundant and pointless. Male masturbation toys are even worse, what a joke.

The ESC looked for what other people are saying about giving handjobs – when they can actually find people who freely admit it. The clique does not take the time to consider that, maybe views like the ones they harbor, make it more embarrassing to come out openly about expressing sexuality in that way. The authors stumbled across one blogger who wants to share her relationship advice and starts out a post by saying:

You should give your man a handjob whenever he wants one.

The ESC was taken aback by this. This is relationship advice? I myself am reluctant to issue any “You should do x” proclamations on this blog, since I know that “Shoulds” never apply to everyone. The blogger, Advicebootcamp, also talks about having “maintenance sex,” whereas for me if sex ever becomes something I do as a maintenance chore, it will probably be something that, I may not want to do at all for awhile.

But this same exact blogger who gave the handjob advice also openly discloses that,

I suffer from a low sex drive (unless in the throes of the first 3 weeks syndrome). I use the word “suffer” quite deliberately.

I wish I had a high sex drive. I wish I’d see my guy, get wet immediately, drop to the floor and spread my legs every time I saw him. It would make him really happy, and I’d feel a lot less frigid.

Unfortunately, for whatever chemical-soup list of reasons, I can go without sex for scary periods of time – and he can’t. My guy actually has a pretty high sex drive and, like most men I’ve encountered or heard of, requires sex and sexual intimacy to feel loved, successful, and happy.

I cannot help but pick up on her use of the word “Frigid” in serious context – that Freudian, antiquated, grossly offensive code word for “Sexually dysfunctional,” and it sounds to me that her low sex drive bothers her, at least a little. AdviceBootcamp does not openly identify as having FSD and it is not my place to say that she does.  But I recognize that in this case, she has found a way of coping with something that otherwise bothers her.

The ESC tries to understand where Advicebootcamp is coming from…

Aha! It makes a lot more sense to lend your man a hand “whenever he wants”, if you’re refusing sex to him on a regular basis. (We’re not saying anyone should ever have to have sex or substitute a handjob for sex out of guilt, and we’re not making light of any issues or circumstances that might cause low sex drives or sexual incompatibility in a relationship. We’re just saying that her suggestions seemed pretty sexist and ridiculous without that background info but now make a little more sense.)

If it makes more sense with that background information, then why bring it up at all? And why handle it so clumsily?

Unfortunately, that same paragraph presents a whole new slew of problems.

So now, I’m “Refusing sex to him [my boyfriend] on a regular basis,” by not having, the kind of sex that the ESC tells me is “more grownup kinds of sex.” Whatever that even means.
Is the childishness of the handjob anything at all like Sigmund Freud’s assertion that only sexually immature women have clitoral orgasms, and that real, mature women can have vaginal orgasms from penetration alone?

I notice that oral sex is mentioned over & over as a one-up from handjobs. I’m often willing to enjoy this kind of sex, too, yes.
But there are times when I don’t want oral sex. Maybe I’m tired. Maybe I have a headache & moving my head around is going to aggravate it too much. Maybe we already had oral sex and are in the mood for something different.
Maybe I don’t need to justify my reasons at all. Maybe there is no reason.

But perhaps any reason I could give will run too close to one of the ESC’s friends, who,

once explained to us that she found handjobs useful for those times when she was with a guy that she “wouldn’t want to give a blowjob to”.

To which the ESC responds with,

Either you want to be involved with the penis or you don’t… If he’s too gross for you to go down on, then why are you hooking up with him at all?

“Either you want to be involved with the penis or you don’t…”
“Don’t start what you can’t finish.”

Maybe my reluctance to give of myself wholly to my partner’s penis, doesn’t actually have much to do with him at all. Maybe he’s not “Gross.” Maybe it’s all me… does that mean I should abstain from so much as starting any sexual activity? Would that be leading him on?

But the ESC  just keeps on going like that. It just gets worse.

We’re sure that the occasional handjob would help to keep peace in a sexless relationship… but for a couple with a more “normal” sex life, it just seems a little boring and inadequate to choose the HJ over all the other awesome things you can do.

Ouch. There’s that word again, “Normal.” Thus implying that, my sex life is not normal.
And normal, is good.
And, even though I would consider handjobs to be a type of sex, if you’re not meeting the ESC’s definition of “Sex,” then your relationship is sexless.
This quote really throws people without “Normal” sex lives under the bus, too. Not normal? No one even wants to think about you!

But alas, a handjob, in and of itself, is inadequate as sex play. From a comment left by one of the authors:

We did say that we’ve used the handjob as part of foreplay. It is merely the handjob for the sake of handjob that mystifies us.

Foreplay. As in, something leading to “Real” sex, rather than something to enjoy by itself. Something that must inevitably lead to more.

In so describing the  handjob as lowly & immature, you succeed only in denying me and my partner sex that we both enjoy.

And so I must be the only one to stand up and say…
No more of this! No more, pedestalizing certain sex acts to the detriment of others!
And while we’re at it, no more, questioning, devaluing, tossing other sex acts into the gutter! No more telling me what one act or another means, instead of letting me construct my own meaning! No more!
No more “Oh that’s just foreplay, intercourse is the main course” bullshit.
You think we could maybe stop doing that? This is not the only example I have seen. It’s not always handjobs, and I could probably use these same arguments with regard to almost any other non-intercourse sexual activity. It is just the most recent.

What I’m reading between the lines is another iteration that my sex life is weird, I’m weird, my partner and I are weird for choosing to keep handjobs in the sexual activity rotation – among other things. This is not a rational decision made by two thoughtful, creative, consenting adults.

And I come away from the post feeling more sexually insecure and uncertain than I did when I went in.