The post 20/20 vulvodynia discussion08/08/2009 at 3:14 pm | Posted in Uncategorized | 11 Comments
Tags: communication, experts, female sexual dysfunction, Feminism, FSD, health, media, medicine, pain, sex, sexual health, television, vaginas, vulvar vestibulitis, vulvas, vulvodynia
Last night, August 7 2009, the US television program 20/20 ran an episode of “Medical Mysteries” including a segment on female sexual pain disorders. The day before, August 6, Good Morning America also ran a shorter teaser segment on the same. It’s a pretty big deal since, it’s still a taboo to talk about sex frankly & openly in the media, especially when things don’t go as expected. Vulvar pain & painful intercourse have appeared on television before, but only very rarely, and not without well deserved controversy & criticism. The 20/20 episode was one of the few times where this sort of pain was addressed. Even more rare, the interviewees were actual people, not just made-up characters.
If you missed any of this, or want to see it again, here are resources. I don’t know how long these will stay online.
20/20’s site – the program’s main page
20/20’s video segment – the video in question
20/20’s article, Sex Pain: Millions of Women Have It – you can leave comments here too
Contribute – this is where to go to contact ABC directly about the 20/20 episode
Good Morning America’s site (the teaser preview video featuring Dr. Tim Johnson was embedded there as of 8/6/09)
Now that the show has aired, there’s a couple of things we can address. What comes to my mind first,
Once again, for some reason, the actual terminology for these pain conditions was not used. At no point were words like, “Vulvodynia,” “vaginismus,” “pudendal neuralgia” used. Related, overlapping conditions sometimes found in conjunction with vulvovaginal pain were not addressed in detail, including but not limited to, interstitial cystitis, fibromyalgia, and irritable bowel syndrome.
The omission of specific terminology is strange and awkward to me. One of the women interviewed, Chris Veasley, is the NVA’s associate executive director. Dr. Andrew Goldstein said that the pain conditions have a name, but it was not spoken aloud.
The program talked about what must be vulvodynia & vulvar vestibulitis, without actually using the words! I don’t understand why – Sex & the City used the words, so too did Private Practice. The 20/20 article Sex Pain uses the word “Vulvodynia” only once, to link to the NVA. Why does it not appear more frequently in-text?
Why do we not speak the words? In fantasy & science fiction stories, speaking a true name either gives or takes away power from the person or object being talked about – but in real life it doesn’t work that way. Speak the names! Speak, “Vulvodynia,” not, “She-who-must-not-be-named.”
Are you reluctant to speak the words on national television for fear of backlash by conservative groups & individuals? Is sex & sex pain still that much of a taboo? What is the reason?
The pain was described as vaginal, which, is technically incorrect at least some of the time – vulvodynia & vulvar vestibulitis happen in the vulva & vestibule (although you can certainly experience true vaginal pain too, or exclusively.) But why use “Vaginal” pain as a descriptor instead?
That mix-up happens a lot though in general – “Vagina” will be used where “vulva” is meant. I will forgive Susanna Kaysen for using the word vagina interchangably with vulva in her memior, The Camera My Mother Gave Me. But it is critical to point out the correct location of pain, for proper diagnosis, treatment, and description.
How many women will write off this episode as irrelevant to their very real pain, because thier pain IS vulvar rather than vaginal?
I do not agree completely with one of the women, Allison, who said that “Part of being a woman, is having female sexual organs, and when they’re not working properly, it’s kind of an assault on your ego as a woman.” I’m not completely comfortable with this statement, because not all women are born with female organs, recognizably female organs, still others will not have “Normal” female organs, and because not all women feel bad when their parts are not working as expected. It is not a requirement to feel an assault on your ego, when something is not going exactly to plan.
Still, I recognize, that in US culture at least, female sexuality is marketed & taught in such a way that it makes it very easy to feel bad about it, when you do not or can not live up to the arbitrary standards set up by the environment you grow up in. I know that. I feel it. I’m struggling with it. How do I reconcile my limitations and abilities, when the kind of sexual performance I see depicted as valued, is so often far out of my reach?
I would have liked to see a little more about how the vulvar pain spills out into other areas of life, although this was mentioned superficially – biking, wearing tight pants, sitting, walking… sometimes these ordinary activities are hindered by the pain. It’s sexual pain, yes, but it’s so much more than that. It can be pain that is there, whether or not there is any sex going on at all. It is chronic pain. It is vulvar pain. It can interfere with social activities, recreation, exercise, and work – to the point where you can no longer do any of these things.
All three of the women interviewed had been in long-term heterosexual relationships. We did not see the perspective of a single, nonwhite, queer, or senior woman.
This segment was 8 minutes long. That’s nowhere near enough time to cover all the material available on vulvodynia, vulvar & sexual pain disorders. I have no doubt that there is enough material available to make an entire hour or even two-hour long in-depth documentary. Perhaps as a result of this, ABC had to focus on only a few topics, but that meant that the show also only scratched the surface. Three common causes for vulvovaginal pain and three types of treatments were talked about.
I am one of the women who experienced all 3 types of the most common causes of pain and tried all three interventions mentioned in the TV show.
I was diagnosed while I was still on birth control pills, and a hormonal blood test revealed that my hormones were all out of whack. I went off of the pills and used a topical hormonal gel, and a follow up blood test showed the hormones were back to within normal range for a person my age. That gel helped a little, and I will not use hormonal birth control again.
I have/had poor pelvic muscle strength & functioning, and am addressing that with physical therapy. This helps a lot.
I took the surgical route (which is not named for what it is, a vulvar vestibulectomy,) to remove the borked out nerve endings in my vestibule and that made a big difference, but I still needed that physical therapy to address the muscular issues. The surgical option may not be right for everyone, and success rates can vary depending on which scientific study we’re reading, and who’s personal anecdote we are hearing.
However, other treatments were not mentioned including but not limited to, topical lidocaine, oral antidepressants or anti-seizure medication, diet and alternative medicine. There’s more than three options available, and what works for one may not work for another.
These are but my thoughts on the program, and should not be interpreted as the only ones. There is much-needed discussion going on about the program elsewhere online and in the support groups.
So, still controversial, even after all these years. Perhaps the next program – and there had damn well better be another, as I cannot imagine vulvodynia disappearing altogether in the near future, much as I would like to see that – will be able to learn from the discussions taking place online. Keep the good parts, make adjustments where the criticisms are. Listen to the feedback!
I am glad to see this type of pain being discussed in the open.. but I want more. I want so much more.