Wednesday, August 6, 2008

A Pain in the Pelvis

Here at Kittywampus we aim to deliver an unpleasant medical fact every few weeks. And no, I'm not trying to gross out my most tender readers. I've got this ongoing obsession - I mean, research interest - in gender and health. You, dear reader, just happen to be on the receiving end of it.

So, now that you've been warned: I read a rather alarming statistic today on the incidence of vulvodynia. That's a fancy Latinate way of saying pain in the pussy. It's sort of a garbage-can diagnosis, in that pain can have disparate causes. It only names the symptoms, not the etiology.

Even the symptoms can vary. In some women, vulvodynia resolves within a matter of weeks. Many live with it for years. Some suffer worse with intercourse, while for others, pain may be independent of sexual activity. Other activities may exacerbate it - or not. Sometimes the pain is more internal, sometimes more external. In most cases, the pain very significantly affects the woman's quality of life.

I've personally had some intermittent experience along these lines. I don't want to go too deep into TMI, and frankly I debated with myself about whether I should even mention this, but if I don't, I'm playing into the same shame that keeps the problem closeted in the first place.

I've never been diagnosed with vulvodynia, but I do know severe pelvic pain. So I'll just say for the record that severe pelvic pain doesn't really respond to painkillers. It laughs at Tylenol or Motrin. You can bring out the big guns, but Vicodin or Percocet doesn't erase it; you just gain some detachment so you can pretend it's not really your own body that's so miserable. Really, this isn't surprising when you consider how sensitive those nerves are. They're wired for pleasure. That same wiring can cause debilitating pain.

And it turns out that this sort of experience is shockingly common. According to the latest issue of Obstetrics and Gynecology (free abstract here), over the course of a year, 1 in 50 women will develop vulvodynia. That's not a lifetime risk. That's the number who report new symptoms of it over a single year.

The study spanned two years and included 744 women who completed the follow-up, though the pool of women who had no symptoms at the outset was smaller, just 372. The study's statistical power is a bit weak, as the abstract reveals:
Of the 372 asymptomatic women controls at initial enrollment, 13 (3.5%, 95% confidence interval 1.6–5.4%) had developed vulvodynia during the 2-year follow-up period; nine (2.2%) of these had ongoing symptoms.
So let's say the low end of the estimate is correct, and fudge it even lower to correct for the fact that the 2.2% figure doesn't supply the range for a 95% confidence interval. We're still looking at more than 1 woman in a hundred.

But remember, this figure only covers a single year. What happens if we make a few reasonable assumptions and estimate a woman's lifetime risk of suffering from vulvodynia? Some of the "new" cases in this study may well be repeat customers, so to speak - women who've experienced these symptoms in the past and are suffering a recurrence. Let's say this accounts for half of all cases. That leaves us with an annual incidence of one woman in 200, or 0.5 per 100.

Even so, 0.5 women per 100 multiplied by, say, 50 years (to account for the age span between 20 and 70) still yields an estimate that's shockingly high: 25% of women, by this reckoning, will suffer from vulvodynia at some time during their adult lifespan.

I don't have any way to test how reasonable my assumptions might be. I tried to skew them in a conservative direction. But even if the number of discrete recurrences is much, much higher and the true lifetime risk is, say, only one in ten instead of one in four, that's still a mighty high number.

This study had the advantage of being prospective - that is, following a group of women over time. A previous, retrospective study (which used a questionnaire that asked women to recall their histories) put the lifetime risk at about 16%.

So how come we so rarely hear about vulvodynia? I'm disinclined to blame simple sexism. I know that men also suffer from unexplained pelvic pain, but there's less consensus on a catch-all name for the male equivalent. Googling "testodynia" gave me all if 18 hits; "penodynia" yielded 11 and led me to a veritable jackpot: "scrotodynia" with 138 hits. Then there's "prostatodynia" with 16,600 occurrences, which is sometimes used as a synonym for chronic prostatitis, which in turn is also called "chronic pelvic pain syndrome" with some 59,400 hits. (I wasn't aware of this last term until figleaf mentioned it a few weeks ago.)

Vulvodynia, by contrast, comes up 168,000 times. I realize Google isn't the measure of all importance, but still! Women have become much less shy than men in advocating for their sex-specific health needs, and the greater visibility of vulvodynia on the Web reflects this young tradition of advocacy.

On the whole, then, women's needs aren't being neglected any more than men's. But when it comes to unexplained pelvic pain, both men and women are being neglected quite sorely. These aren't conditions that kill, and so there's not a lot of glory for researchers in understanding them. Severe pain can rob people of their lives, however, and that alone should concern researchers as well as us ordinary, vulnerable human beings.

I think the problem is that vulvodynia and similar conditions are both too sexy and terribly unsexy. Too sexy, because they draw attention to those body parts that our culture still so often denies. And unsexy, because there's nothing sexy at all about pain in your pussy. Until we as a society get over our confused feelings about sex, we're doomed to be in a state of denial about the real medical needs of our sexual anatomy.

And now, let's get back to our more usual O'Keeffe-ian perspective.

But first an update from 8/9/08: In comments, Alexandra pointed us to this additional resource for vulvodynia, Cure Together. If you're suffering from unexplained vulvar pain and stumbled upon my blog, you might want to check it out, along with the National Vulvodynia Association.

Daylily from my garden three weeks ago, guaranteed to be suffering no pain. Then again, it only lasted a day.


Alexandra Carmichael said...

Thank you for posting about vulvodynia!!!! I have had it for 12 years but was only diagnosed last year, after a string of doctors told me it was just in my head. Anything we can do to increase awareness of this shockingly common condition will help people a) realize they have it and b) do something to help themselves heal.

Sungold said...

Hi Alexandra,

I'm glad you finally are starting to get some answers. I hope that means you're also getting effective treatment. I wish you many years of good health!

The only good thing about being told "it's all in your head" is that some of us get radicalized by the experience and get involved in activism. Years ago, a doctor said that to me when I was suffering from persistent fatigue - and that experience pressed me to study the history of women's health. On my blog, I try to bring some of that academic knowledge about gender and health to a slightly broader public. I wouldn't be doing this if that one doctor hadn't been such an ass.

Thanks for the link. I will add it to the post as an update.

Anonymous said...

My name is Monica Stone and i would like to show you my personal experience with Percocet.

I am 35 years old. Have been on Percocet for 7 days now. It did help the pain but the side effects weren't worth it. I'd rather have the pain.

I have experienced some of these side effects-
nausea, very itchy, racing heart, anxiety, flashing lights(almost hallucinogenic?), weird dreams, tiredness

I hope this information will be useful to others,
Monica Stone

Percocet Prescription Medication

Sungold said...

Thanks for your perspective, Monica. Your experience is not uncommon. At least two of my family members react weirdly to Percocet. (That makes it sound like we all sit around getting stoned on prescription pain meds - not so!) It just makes me really really stupid, so I've only taken it for severe back pain. Vicodin makes me jittery and sleepless. I guess this is for the good in that I'm not in much danger of becoming addicted. :-) However, it's a problem for people in severe chronic pain that the available drugs have such significant side effects, including the potential for addiction.