Twice while I was in the exam room for my second visit with Dr. Howard, the lid of the garbage can started rocking up and down by itself. Both times, I heard the words of Anne Sexton:
He starts to laugh,
the laughter rolling like a hoop out of His mouth
and into mine
Apparently, that garbage can is God.
The first time the garbage can laughed, I was alone in the room doing my pre-doctor's-visit meditate-pray-atone-plead. The garbage can said, "You are so frickin' uptight," so I stopped.
The second time the garbage can laughed, I was mentally rejecting a theory that Dr. Howard was putting forward about my pain. The lid rocked up and down, and I thought, okay God, I accept your hoop.
Dr. Howard's theory is that I have skenitis. Skenitis is inflammation of the Skene's glands, which flank the urethra. When the fellow who was with Dr. Howard, Dr. Paula Boyle, did the Q-tip test -- I think I was her first! -- the Skene's glands were the spots where I wanted an exorcist in the room. When she touched the urethra itself with the Q-tip, I hardly felt any pain. The rest of the vestibule varied from 3 to 9 on a 10-point pain scale.
I can't google skenitis. There are too many horrifying pictures that look nothing like my vulva. But my mom googled it, and she said there's evidence that pain can be referred from the Skene's glands to other parts of the happy crack (a term I use because it includes the perineum and anus).
So Dr. Howard's plan for me is this:
Continue the Gabapentin (I'm up to 1200mg all at once at night)
Topical lidocaine 3-5 times per day
Valium suppositories twice per day
He says he has had a 30-40% success rate clearing up skenitis with an extended course of doxycycline (an antibiotic). The plan is that I will take it for 3 months. So I will be doing all the tricks to stave off yeast infections... ahh! (Here is a great guide to fighting yeast infections.)
I've had problems with lidocaine burning my skin in the past. Dr. Howard says that if it burns to start and continues to burn for more than five days, it won't ever stop burning, and I should stop applying it. We'll see. I can't remember how I was applying lidocaine before. That was probably 5 years ago!
The Valium suppositories are for the muscle issues I have from the pain. Funny -- my psychiatrist handed me a study a couple sessions ago about Valium suppositories for vulvar pain. And here I am, assigned to take them! And in the intervening time, my psychiatrist prescribed me Valium for brain stuff. So I am feeling like the maximized version of a disillusioned 1960s housewife.
Dr. Howard seemed to think I don't have bladder issues. I am comfortable with that. I don't have the urgency and frequency associated with interstitial cystitis, and those seem to be essential for IC's diagnosis. (Visit this site for all the IC info you could ever want.)
Dr. Howard held onto the diagnosis of vulvodynia/vestibulodynia. I usually hate that diagnosis because it essentially means "we don't know," but I trust Dr. Howard's judgment more than I've trusted other doctors', so if he wants to diagnose me in part as "we don't know," that's fine with me. (Though I'd add clitodynia. I think it deserves its own mention. If you don't know what these words mean, -dynia means pain, and the rest is exactly what you think.)
Dr. Howard said it's a good thing the nerve blocks didn't work because nerve entrapment wouldn't have accounted for all of my pain -- specifically, it wouldn't have accounted for the urethral pain. Knowing that entrapment is unlikely, we might be able to find a single source for my pain instead of having to treat multiple sources.
But I have seen my pain improve when lying down, which is typical of nerve entrapment. My theory is that lying down allows my muscles to relax because they aren't defending my urethra against movement and pressure. When my muscles relax enough, the pain in the vestibule quiets down significantly. Then I'm left with pain in the urethra/bladder area. And maybe that's why lying down for multiple days in a row improves my pain so much. Maybe it has nothing to do with nerve entrapment.
When I told Dr. Howard the nerve blocks were messing with my period, he said that with my low BMI, it makes sense that even low doses of steroids would give me side effects. But I didn't tell him about my turning into a werewolf. My plan is to Nair my entire body from my shoulders down and see if the fur grows back. I don't think it will. I'm pretty sure it's the steroids that are making me furry. But if not, I will just have to find a good groomer.
I hope I've recorded all of the important info here...please feel free to ask/email questions. Dr. Howard wins the Battle of the Crotch Doctors handily. He even went off at the end of our visit about how 75% of the things the hospital won't report to the patient over the computer (via MyChart, if you're familiar) are women's issues -- pap results, for example. "You can tell how I feel about this," he said after his rant, almost like he was apologizing. I wanted to say, "I accept your hoop!"