Interesting posts, weekend of Halloween 2k9

10/31/2009 at 10:50 am | Posted in Uncategorized | 3 Comments
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Dear Internet, Happy Halloween! Trick or Treat and whatnot. Uh oh, you’ve stumbled across the blog/house that gives out Fruits & Vegetables! Augh! It’s a trap!

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

Posting will likely remain sporadic for the next two weeks.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hey, IPSA e-mailed me back!

10/22/2009 at 6:05 pm | Posted in Uncategorized | 1 Comment
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I should really check my e-mail more often. Check it out; remember that post I did about the movie, Private Practices: The Story of a Sex Surrogate? I said I’d e-mail the organization mentioned in the film, IPSA, with some questions, and someone answered me!

I asked:

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

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

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

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

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

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

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

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

How about that! Ask and ye shall receive.

An example of an article about FSD

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

I read it. Both of the linked articles.

I don’t get it.

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

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

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

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

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

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

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

The lines go on,

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

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

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

The article goes on,

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

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

Things continue forward.

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

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

It just keeps on going.

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

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

And it doesn’t stop.

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

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

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

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

New NVA e-News letter

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

Back issues of NVA Update are available here.

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

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

The NVA even issued a press relesase about the show.

That’s all I have to offer for now.

Interesting posts, weekend of 10/17

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

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

Starting with grouped topics again:

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

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

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

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

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

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

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

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

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

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

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

I’m sure there’s more…

Survey says, still infected

10/13/2009 at 8:29 pm | Posted in Uncategorized | 5 Comments
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I went to the gyno last week to get a follow up on those long-lived, resistant infections I had all summer. I had been feeling a little off when I went in, but nothing major. The exam itself went as well as it could have, which is encouraging – I haven’t reset back to square one pain-wise. The gyno took some vaginal swabs & did a urine culture. She prefers to run samples off to labs instead of diagnosing patients on the spot, and that works better for me too – since my infections don’t always follow the typical course you frequently see described online, I don’t think I could be diagnosed on site, by sight alone. Not enough typical-for-an-infection discharge to go by. My self-reported symptoms aren’t always obvious enough to set off any major alarms either. And even if they were, even I would have to question whether it’s something else like the pelvic floor muscles acting up somehow or skin irritation.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Interesting posts, weekend of 10/11

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

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

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

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

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

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

Couple more topics I’m going to group:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A non-eventful doctor appointment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Healthcare and Vulvodynia

10/06/2009 at 7:56 am | Posted in Uncategorized | 6 Comments
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As we speak the US is embroiled in a health care debate. President Barack Obama is pushing for health care reform in 2009, although there’s been backpedaling on the public option. Town hall meetings are degenerating into heckling & squabbling by attendants. There are a lot of questions & concerns about what health care reform really means. As of the beginning of November 2009, the health care reform is still pending and still splitting opinions.

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

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

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

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

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

According to the Vulvodynia Survival Guide, 62% of vulvodynia patients had income over $50,000 – not because greater wealth increases your odds of developing pelvic pain, but because greater income means greater access to doctors and care. (And, as these were self-reported figures gathered from, 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?
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! and yes, even I’m only in my 20s and I read AARP bulletins.

Interesting posts, weekend of 10/4

10/04/2009 at 3:13 pm | Posted in Uncategorized | Leave a comment
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Dear internet, this week was slightly better for me than the previous one. I’ve been craving retro video games and even bought a Game Boy Advance SP because my regular GBA doesn’t have a backlight & the screen is kinda beat up. I suppose I could just use an emulator but it’s not the same…

On to the weekly blog link roundup. Posts I found of particular interest for some arbitrary reason. Share links if’n you got’em.

There was a LOT of discussion on Roman Polanski in the feminist blogosphere, and I do not have anything original to add. If you don’t understand what’s going on and Why It Is A Big Deal (it is,) start with these but Trigger Warning! re: sexual assault.

Getting Over It – Lauren, a sexual assault survivor, talks about how the Polanski case has triggered old memories and how hard it is to just “Get over it.” It doesn’t always work that way.

Her Reasons Are Not Yours – You may’ve heard that Samantha Gailey does not wish to pursue the Polanski case any further. Melissa, herself a survivor, talks about justice denied after so many years.

The Polanski “morals issue” – Just in case you had any doubts about consent in this case, it gets pretty graphic.

Roman Polanski As Described By Grand Jury Testimony – Marcella reviews grand jury testimony from the original case decades ago, and talks about what some of the details mean.

A case of morals – just in case you want to actively boycott Polanski supporters, Fugitivus brings us a long list of who to avoid!

And finally, Polanski, Polanski, Polanski – Kate Harding’s own weekly blog link roundup, just in case the ones I’ve posted here haven’t convinced you.

What a week.

Non-Polanski posts of interest from around the feminist blogosphere –

Don’t confuse the ladies during sex by talking! – Absolutely terrible advice from Esquire magazine.

Trunk Tweets a Miscarriage – and is told by commenters exactly how she’s supposed to feel about having one. What? I did not realize there was a right and wrong way to go about having a miscarriage…

Consumer teledildonics update: HighJoy alive, Sinulator dead; plus, Virtual Sex Machine and RealTouch – Because I am still fascinated by teledildonics.

After the Red Pill – actually my experience coming out as feminist to friends & co-workers hasn’t been anything at all like this, but I usually seem to be the exception to all rules, so this account from Shakesville is probably a more common occurrence…

Another type of woman Twisty Faster hates! – Holly of The Pervocracy picked apart some posts and comments made over at I Blame the Patriarchy this week. Posts about BDSM & female domination,which Holly address here.

Boob Month is Here – I am agreeing 100% with everything in this post. Especially this line –

I am sick to death of the pinkification of the grocery store aisles. I’m probably in the minority but I don’t think we can shop or 5K our way to a cancer-free world, and I am suspicious of companies that repackage their goods at this time of year. I’m also not fond of selling “the cause” using sex.

YES. It’s a big deal, it’s a health deal, yes it’s a threat; now is there any better way, maybe even a more holistic way we can go about finding treatments, preventions & cures? Is there any way we can do that without pressing this survivor/fighter thing which implies that if you do not survive, you were not a real fighter?

The Do’s and Don’ts of Being a Good Ally – 10 simple guidelines to not completely messing up a conversation that isn’t all about you. Which yes even I need to keep in mind.

What do bathroom signs tell us about society and gender? – Weird pictures of weird bathroom signs that are… ambiguously binary. Apparently women are a whole pizza? Or something? Women are Pac-Man and men are… Triangles?

I’m sure there’s more…

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