The post Dr. Oz vulvodynia discussion

01/11/2010 at 8:54 pm | Posted in Uncategorized | 8 Comments
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Edit 1/13/10 – Now with 100% more video link!

Earlier this afternoon, Monday, January 11, 2010, the Fox television program Doctor Oz ran a segment about vulvodynia, a chronic pain condition of the vulva which can interfere not only with sexual activity, but with daily activity. There have been several other programs which have dealt with vulvodynia in fiction and in real life. Dr. Oz may not be the first member of mainstream media to talk about vulvodynia, but he is the first to impress me in the way his show handled it.

Let’s try to get on the same page.
Dr. Oz’s show website:
The video segment in question, with accompanying article: When Painful Sex is Something Serious [When is it not?] (Also, I can’t get a video to play; I don’t know if there is one? Edit 1/13/10 – Dr. Oz’s website uploaded the video today! I saw the show by tape recording it with an old VCR.)

This… Wasn’t bad. In fact, I would say this televised segment on vulvodynia…
Was surprisingly good. Not perfect, mind you; there’s always room for improvement, but this was a significant improvement from what I’ve seen before when the media talks about vulvodynia. (Remember Sex & the City? Or Private Practice?) This is probably the best handling I’ve seen so far, 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 brief overview of what’s involved – but it left out a lot of important information. Notably, the diagnosis was never spoken aloud, and the show placed a very strong emphasis on the sexual dysfunction aspect of vulvodynia. For some women, vulvar pain bleeds out into other areas of life besides sexual activity. One other problem I had with 20/20′s handling is that, one of 20/20’s companion discussion pages on the internet went to far as to censor words like “Vagina.”

Let’s recap & review…

Dr. Oz hit the ground running and although the segment on vulvodynia only lasted only a few minutes, a lot of ground was covered. Notably, Dr. Oz actually used words like “Vulvodynia” and “vulva.” 20/20 shied away from explicit but medically correct terminology. Dr. Oz did not confuse the words “Vulva” and “Vagina” or use them interchangeably.

This television program pinpoints the number of US women dealing with vulvodynia to some 6 million, and explicitly claims that 16% of women will deal with vulvodynia at some point during their lifetime. (This figure is about in line with other percentages I’ve seen dealing with chronic vulvar pain; for example the Goetsch study found about 15% of patients visiting a gynecological practice met the criteria for vulvar vestibulitis.)

Dr. Oz himself seemed particularly interested in the sexual dysfunction component of vulvar pain, but he did not overly fixate on it. At several points during the program, Dr. Oz or his guests pointed out that the vulvar pain can leak out into other, nonsexual areas of life – including sitting and working. Dr. Oz also mentioned that this can be a devastating condition to live with; some women experience a loss of self-confidence or become depressed. (Of course, a notable absence is that, some women do not experience distress from living with vulvodynia.)

Dr. Oz and another guest doctor on the show, Dr. Jennifer Ashton, talked about what vulvodynia is and is not (Hint: It is not an infection or disease,) and what some of the potential causes are. Drs. Oz and Ashton talked about what it feels like – “Acid,” “Burning,” “Knives,” etc. And they said that vulvar pain can happen at any time, seemingly from out of nowhere. It’s possible to be fine one day and not fine the next, or you could have pain problems gradually.

The strangest part of Dr. Oz’s show was the traffic light analogy. I suppose Dr. Oz had to use an abstract symbol in place of a vulvar anatomy diagram because this is a daytime television program… but remind me now, hasn’t Oprah brought plush vulva puppets onto her show the topic is sexual health & pleasure? Why Dr. Oz used this traffic light analogy, I’m not entirely clear. It didn’t seem critical. We could have used a different object, but whatever.
The traffic light analogy is this: Think of an ordinary traffic stop light as a metaphor for the vulva. The green light at the bottom is the anus, the yellow light is the vulvar vestibule, and the red light on top is the urethra. The entire light, including the metal casing, is the whole vulva. “Vulvodynia is pain in that area.”

There’s no set diagnostic test for vulvodynia, so doctors rely on a q-tip test. A doctor will take a q-tip and lightly touch around the whole vulva. If the patient has a pain reaction, it’s a warning sign that she may have vulvodynia. (The q-tip test alone may not be enough, as vulvodynia remains a diagnosis of exclusion.)

The causes for vulvodynia mentioned on this television show are a little different from what 20/20 went over, but still causes that I’ve heard before, and so not completely out of the blue –

  1. Genetics – for example, if you or a relative have a history of problems with inflammation, there may be something happening in your cells.
  2. Yeast – the theory being that chronic yeast can lead to other long-term problems.
  3. Pelvic floor weakness – such as pelvic floor dysfunction in my case; if the muscles weaken & shorten, it may trigger pain (How this works is not explained.)
  4. Trauma, such as injury.

Now, these may not be the only causes of vulvodynia; which one of these causes did I have? I don’t know, and I will never know. Although I have pelvic floor dysfunction, which came first – the vulvodynia or the vaginismus? The possibility of a hormonal component in the development of vulvodynia was downplayed except as treatment – in the form of topical estrogen. We’ll get to the show’s treatment coverage shortly.

One of the guests on the show was the National Vulvodynia Association director, Christin Veasley. (Has her title been upgraded? When she appeared on 20/20, she was the associate director.) She appeared on the 20/20 program as well; however this time around she was able to provide more details on her history. Christin’s vulvar pain came on suddenly, a few years after an accident, and she dealt with chronic pain not just limited to sexual activity; it limited her activities & what she could wear. She eventually married, had surgery, and went on to have intercourse and children. She’s feeling much better now, and in fact her recovery was fast- she was having intercourse within two months of surgery! It took me two years to reach that point! (Although for me it is harder to have intercourse at all, being in a long-distance relationship.)

Dr. Ashton pointed out that the surgical approach, which I myself have taken, is controversial. It’s not right for everyone and may be reserved as a last resort.

Here, Drs. Oz and Ashton go over four non-invasive treatments – another big improvement over the 20/20 special, which covered only surgery, hormones and physical therapy. Here, the Dr. Oz show covered:

  1. Biofeedback – Re-training the pelvic floor with the aid of a computer
  2. Physical therapy – Emphasis on massage
    (Really, Biofeedback & PT can be used together, and so could have been lumped into one treatment possibility. But it’s possible to do them separately too.)
  3. Topical estrogen – May restore elasticity to the vulvar tissues
  4. Anesthetics – Both Dr. Oz and Dr. Ashton were apprehensive but not entirely closed minded about prescribing anesthetics, since they numb the area. The trade off is that numbness is counter-productive to experiencing sexual pleasure. Dr. Ashton felt numbing agents such as lidocaine, may be appropriate for “Mild to moderate,” or “intermittent” vulvodynia.

Dr. Oz’s second guest Lisa developed vulvodynia about 20 years ago (!) after a few years of pain-free sex – she was 23 at the time, and very upset when she was told she’d never have the same sex life she had enjoyed up to that point. Here another possible treatment is mentioned – antidepressants. The type of antidepressant Lisa used was not named – for pain management, I’ve usually seen tricyclics used, not SSRIs. And for Lisa, her dose must have been relatively high – still low enough to not treat mood disorders or depression, but a high enough dose to be called “High” on the show. Here Dr. Ashton took some time to emphasize that the antidepressants used in this way are not for depression.
It was not clear to me whether Lisa is still on her antidepressants. With tricyclics, I’m aware that sleepyness can be a side effect, but if Lisa was sleepy, I didn’t notice it.

Dr. Oz’s third guest, Debbie, developed vulvodynia after using a topical yeast infection medication, about 2 years ago. Her treatment has been topical estrogen, and she’s been seeing a vulvovaginal specialist.

Dr. Oz then calls his guests onto the stage to talk about simple at-home interventions – all non-invasive. These simple interventions include:

  1. Cold compresses – like a bag of frozen peas since a bag of frozen peas can mold to the shape of the vulva. Dr. Oz could have also mentioned a sitz bath or rinsing with plain water after urinating, but did not. (To his credit, I know from personal experience that they are embarassing to carry around in public!)
  2. Using plain, boring toilet paper (He should have also mentioned changing soaps & laundry detergent.)
  3. Dietary changes – Here Dr. Oz is again apprehensive, as the low-oxlate diet in question is controversial. Some women see improvement on it, others do not. I personally do not wish to go on this diet, as I do not and did not have any food triggers that I know of… Except maybe for coffee; I tend to avoid coffee as much as I can. It’s very dehydrating anyway.

Dr. Ashton emphasized that patients should continue to search for what treatment works for them. There is no magic bullet cure, and what works for one woman, may not work for another. Dr. Oz concludes by pointing viewers to his website, and by saying that “If you’ve got pain down there, it’s not in your head.” This is an important message – its opposite is one of the most hurtful & counter-productive ones I’ve run into.

Now, at Dr. Oz’s website, after the embedded picture there’s a three-page article. There’s a couple of notes I want to point out from the site. The third paragraph of the article says, “The pain is a real gynecological condition called vulvodynia (aka vulvar vestibulitis) and the medical community is just waking up to high prevalence of this condition and finally starting to do something about it.” However, vulvar vestibulitis is a specific diagnosis; it is a type of vulvodynia. I personally tend to use “Vulvodynia” as a broad blanket statement, meant to include the specific category of vestibulitis. But vestibulitis is not necessarily the same thing as vulvodynia broadly. The article is clearer further on, “Vulvodynia includes any condition that causes pain, burning or itching in the vulva that cannot be attributed to a specific cause such as an infection, skin condition, neurological damage or cancer.” However, this is the first time I’ve heard the pain of vulvar cancer referred to as “Vulvodynia.” I’m not 100% sure if that’s correct, since cancer would be a different diagnosis… Although on the other hand, I imagine you can have both cancer and vulvodynia at the same time.

I’m impressed by the rest of the article – the author even pointed out the importance of using a smaller speculuum on patients for whom vulvodynia is suspected. The article also addresses some of the weaknesses of the short television segment, such as rinsing with the vulva with water after urinating. The website doesn’t touch upon all therapies available, (I do not see acupuncture listed) but it’s not a bad starting point. Interestingly, I don’t see sex therapy listed as an option (although sex therapy probably would not address the daily acute pain anyway; just the sexual component.) The article concludes by pointing readers to the National Vulvodynia Association. As of this moment, I do not see any comments posted at the article page (I’m not sure if Dr. Oz’s producers & webmaster allow comments.)

One drawback is that the article does not address the possibility of overlapping conditions, such as fibromyalgia, IC and IBS in relation to vulvodynia. It also does not mention vaginismus, although technically speaking I suppose that’s wrapped up in pelvic floor functioning.

Overall this… is a pretty good handling of vulvodynia on TV. Perhaps Dr. Oz’s producers actually listened to the feedback generated from the NVA following 20/20’s Medical Mysteries special. I think I’d like to write a note to the show producers to summarize what they did right and where they could use some improvement. But overall, I’m more satisfied with this than I have been in the past. I still want MORE coverage and more, better treatments for vulvodynia, so, TV producers if you will be covering vulvodynia again (you had better,) could you make it more like this?

What did you all think though? Where did you see room for improvement?

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.

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