The post 20/20 vulvodynia discussion

08/08/2009 at 3:14 pm | Posted in Uncategorized | 11 Comments
Tags: , , , , , , , , , , , , , , ,

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.

MOAR.

Advertisements

11 Comments »

RSS feed for comments on this post. TrackBack URI

  1. THANK YOU for this post (and this site)! I’ve just been diagnosed with vulvar vestibulitis and it’s nice to see someone else discussing the issue.

  2. I thought it was strange that they didn’t mention what the actual name was either. They were throwing out sexual intercourse and sexual pain left and right, at what point does using the term vulva sound worse, but I guess its all up to the gods of the television to decide what can and can not be on tv. I thought it was interesting as well that all 3 of the women were cured of their vulvo-vaginal problems. I realize this allows them to put a positive spin on the condition but I bet that a majority of the people diagnosed are not cured that quickly. If they had maybe had 2 women with success storied and one who was still suffering it would have highlighted the fact that this is still something that is being researched and developed. That not all treatments work and that there is a need for more funding and research in order to help all women who suffer from this.

    As far as the ego comment is concerned…I would agree with you. I don’t think it has anything to do with ego at least not the one implied. If we are talking about ego in the philosophical sense then maybe, but I don’t believe that was what was meant. When I become frustrated with me situation it is not because I feel like it’s a blow to my ego, its simply that my body is not functioning the way its supposed to. That there is something internally broken and I want to find a way to fix it.

    So anyway it was awesome that this piece was aired but a)it was too short and b) I wonder how many women actually watched it?

  3. 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.<<<<

    AMEN!!!!

  4. I DID NOT GET TO SEE THE “20/20” OR “GOOD MORNING AMERICA” EPISODES. AS FAR AS I CAN GUESS I HAVE BEEN SUFFERING WITH VULVODYNIA FOR 3 YEARS. 2 OF THEM IN BED. I DO NOT SEE MY EGO MIXED UP WITH THIS.

    TWO THINGS I’M SURE CAUSES THIS PAIN, 1.EMOTIONS POSITIVE, OR NEGATIVE 2. MOVEMENT. I’M SURE WE ALL HAVE SIMILAR STORIES, AND DIVERGENT STORIES.LIKE YOU POINTED OUT 3 WOMEN IN 8 MINUTES IS QUITE INADAQUATE FOR SOMETHING SO IMPORTANT.

    WHILE READING YOUR THOUGHTS, IT CAME TO MY MIND THAT THE EQUIVALENT PAIN FOR MALES IS EVEN LESS TALKED ABOUT.

    THANK YOU FOR YOUR THOUGHTS.

  5. […] (And lots of variations on this term)  Speaks for itself, you’re probably looking for this post, analyzing an episode of the program 20/20′s vague coverage of female sexual pain. hair stuck […]

  6. […] 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. […]

  7. […] 4. The post 20/20 vulvodynia discussion – One of the most popular posts on Feminists with FSD; traffic spiked immediately following the 20/20 episode in question. No wonder – if you google 20/20 vulvodynia, as of 12/31/09, this site is second only to the NVA’s official page! […]

  8. […] that, among other things, they actually use the word, “Vulvodynia” in this program! Last time a major US program ran a segment on vulvodynia, the word was not even spoken aloud, although that […]

  9. […] and I hope that this improvement in media coverage of vulvodynia becomes a trend. For example, when 20/20 ran a segment on vulvodynia in August 2009, the show spread awareness of the condition & gave a […]

  10. […] vulvodynia – You are looking for this post with a video link. Still very […]

  11. I read on a forum to rinse after urinating and it really works. I have been suffering from vulvodynia for years and this simple rinse has taken all my symptoms away. The water must be cool and I use a bottle used to apply hair color. Get it at a beauty supply store.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s


Entries and comments feeds.

%d bloggers like this: