Friday, November 19, 2010

Vulvodynia: Intercourse Impossible

Last post, I wrote about a news story a local Cleveland station was advertising -- "Off Limits! Married Couples That Can't Have Sex." I was out of town when the story aired live, and the video on 19 Action News' website wasn't working for me at first, but tonight I got it to work! Check the story out here.

The report, or at least its packaging, is par for the course for 19 Action News, The Only News Team With A Chopper. One of my favorite lines from the story: "She was diagnosed with a condition called 'vulvodynia' -- Intercourse Impossible."

Even with the hype, I think the report is valuable. A LOCAL STATION IN CLEVELAND RAN A NEWS STORY ABOUT VULVODYNIA. That's worth about a thousand points. But also, the report features a couple who speak openly about the woman's vulvodynia and the surgery she had to address it. It also features a doctor IN THE AREA who is NOT the vulvodynia specialist I saw who JUST treats female sexual pain. Appointment time...

I will continue to make fun of 19 Action News, The Only News Team With A Chopper, because they are silly. I also know they only ran the story because it involved SEX in a way that they could package as SCANDAL. However, I appreciate how something so stupid as a hint of scandal can cause a News Team With A Chopper to accidentally raise awareness about a serious and virtually silent condition. Sometimes our gossip obsession pays off.

Sunday, November 7, 2010

Vulvodynia on 19 Action News: "Off Limits"

19 Action News -- the only news team in Cleveland with a chopper, and also the only news team in Cleveland that uses expressions like "thugs" and "just horrible" -- is advertising a health special they will run on Monday, November 8: "Off Limits -- A Medical Alert."

"19 Action News with a frank look at a growing phenomenon," their website says. "Married couples who have never had sex.

"It's not because they don't want to...but rather because they can't.

"Go inside the strange, embarrassing condition affecting millions of women that no one's talking about.

"Nobody, that is, except 19 Action News!"

I couldn't have written a more fabulous teaser myself!!!

Nowhere on their website or in their commercial do they say what the condition is -- but I've got a hunch.

And, of course, I'm going to be out of town! I won't be able to watch! I'm hoping they post the story to their website after they air it. I'll be sure to follow up with you guys!

On their homepage, 19 Action News is running an expandable header that says


Then, when you expand it, it says


19 Action News. Honest. Fair. Everywhere.

Friday, November 5, 2010

Dr. Jack Says Sclerosis of the Spine

"Well, I have vulvodynia -- chronic vulvar pain."

"Yes, I know what it is."

I know simple transcription doesn't always capture things like condescension and hostility, but generally, this is not a good way to start off an appointment.

Also not good: being questioned about why I made a same-day appointment for hip pain I've had for a year or more.

Why? Because I woke up last weekend with electric skin from my waistline to my mid-thigh, from my bellybutton to my outer hip. It lit up with just the touch of my finger, just the brush of fabric while getting dressed. And it's still like that six days later, and while I don't think it's in the process of killing me, I also don't want to wait a month to see someone about it. Is that okay with you, Dr. Jack Something? Something with an A?

Everything Dr. Jack said was confrontational. I wasn't taking any vitamins? How could I have such a high vitamin D level if I wasn't taking any vitamins? Not any vitamins at all? Why wasn't I taking any vitamins? Had anyone ever recommended vitamins? Why had I made a same-day appointment? I hadn't ever seen Dr. Kelleher? Why was Dr. Kelleher listed as my primary-care physician if I had never seen her?

"I don't know," I said, letting my voice fall to the floor.

To ward off tears, a friend once told me, look up. I looked across the room to the blood-pressure dial, staring its flat face at me from the wall. It twirled its needle nose, nodded a reminder about the delicious pending snow, and told me, "Get mad, not sad."

"Get mad, not sad," I thought.

"Get mad, not sad."

Mad, not sad. I'm mad. I'm mad. I'm mad. This doctor is short! And awfully rude! Manners aside! Self-doubt aside! I am permitted to get mad!

The blood-pressure dial started rocking against the wall and flailing its little black pumps out into the air. Get mad, not sad! Get mad, not sad! Mad, not sad!

I was sad because as soon as a doctor disrespects you, you know you had a bad throw of the dice. Now you've spent all this time, all this money, and maybe you've even taken your clothes off and spread your legs, and all it got you was more stress. I was sad because I felt so unlucky.

And no matter the blood-pressure dial's flailing, I couldn't get mad. Why is it so hard not to feel wrong in the presence of a Dr. Jack? How could it be right for a doctor to be confrontational from the door? How had he shrunk me to a pea?

Speaking of pee.

"Any chance you're pregnant?" the X-ray tech asked.

"I guess technically, yeah," I said.

"You are?!" she asked.

"No, I mean, I'm not on my period. You never know for sure."

Robe off, clothes back on, back up four floors to the internists' office telling everyone I saw I was there to take a pregnancy test. Pee in the cup -- IN the cup, INNNN the cup -- tell me, Dear Lord, why do they always put the paper towels and the cup-receiving box on the opposite wall? And why is there never a little table that says, Dear Patient, THIS is a good temporary spot for your pee-doused cup?

I am not pregnant. Surprise.

Should I have lied? Do people think 97% means not ever ever possible? Why aren't pregnancy tests standard before X-rays? Pregnancy is like Schrodinger's cat: until you open the box, the cat is both alive AND dead. Until my next period, I am both pregnant AND not pregnant.

And besides, technically, TECHNICALLY, it is THEORETICALLY POSSIBLE that sperm could quantum tunnel into my uterus at a point in time coinciding with ovulation and fertilize me. Take that, activists. Not even abstinence is 100%.

Back down, clothes off, robe on, "I agree with you about never knowing for sure," said the tech. Finally, another fan of quantum mechanics.

I stood up for three X-rays and laid down for two. And just now, sitting at my parents' house among two frolicking and/or growling dogs and with Medical Mysteries on in the background, I got the results, online.

HI Esther,

Your hip xray was normal.The lumbar xrays showed an interesting finding of sclerosis of the L5- S1joints.That is an indication of "wear and tear"or a previous injury.I wonder if this is playing a role with the chronic pain that you get when you sit too long, which you have attributed to a pudendal neuralgia.I again urge you to consider seeing a pain specialist.Hopefully the meloxicam will help with your pain.

Dr. Forgiven...

Injury injury injury...when I think of my tailbone, I think of the two or three times I whacked the thing so hard I went breathless -- once, I think, in a pool, and once not in one. Is that enough injury?

Wear and tear -- I am 30. Posing this as the answer makes me think of my toothless and fully spent ancestors, worn and wise and the heads of their tribes at the unfathomable age of 30.

I do not have enough tribal clout to have acquired sclerosis of the spine through wear and tear.

I realized today that my mysterious condition is actually a lot harder to deal with when I'm visiting doctors. Doctors are exhausting. Even when they're not confrontational Dr. Jacks, they require a huge amount of energy -- communicating your story, managing their info intake -- "no, this, not that; and didn't you hear me say this?" -- and just making sure you say everything you came to say, which of course never happens. I am tired of it. The more I visit doctors, the more my pain stresses me out.

In my AmeriCorps service, I'm developing a health-literacy program. Health literacy is totally trendy right now in medicine -- or getting there -- and if it keeps growing, the next generation of doctors should be gargling with patient-communication skills by the time they get new letters in their names. Here's to fewer Dr. Jacks in the future!

As for me, I'm headed for the pain guys, even though I'm not sure why -- do they treat spine problems or just the resulting pain? Why does medicine insist on being confusing? Does more and more bureaucracy mean longer and longer lives? Is that the secret? We don't die until we get all the paperwork done?! Yes.