Wednesday, September 25, 2013

Post-doctor, skenitis #5

Just got done with my appointment with Dr. Howard, the follow-up to his diagnosing me with skenitis and putting me on a trial course of antibiotics for three months.

The Q-tip test showed that while I still have pain in the Skene's glands, the worst of my pain is now (or was today) in the vestibule. Dr. Howard pointed out (to me in the mirror) that I have slight tears at the 6 o'clock point in the vestibule. The worst of my pain is at a higher point on either side, however. He was encouraged that the pain in my Skene's glands is lower. I, of course, am wondering if the pain is just walking around!

I told him that I also have clitoral pain, which he said is almost always a separate problem from vestibulodynia. I said that my gut says that the vestibulodynia is due to muscle issues while the clitorodynia is due to something else, and he said, "I'll be frank with you -- that's usually the case."  He told me that clitorodynia is usually due to entrapment or impingement of the clitoral branch of the pudendal nerve.

Neurontin makes me sleepy at the doses I need to take it for pain relief, so the doc decided to put me on a tricyclic antidepressant -- Norpramin (desipramine). Tricyclics are commonly used for pain relief. There are two others if this one doesn't help or if the side effects are too bad. I'm starting at 10mg and will titrate up to 50mg or as far as I can go.

The doc told me he has a colleague in Phoenix (this guy) who does surgical release of the clitoral branch of the pudendal nerve. He said it's 30-65% successful (he always has these specific numbers) at resolving clitoral pain, and it's an option of I don't see improvement with meds and want a more definitive resolution to the problem. He said I'm not a candidate for the pudendal surgery they do at Rochester, but his colleagues at U of R have done hundreds (gahhhh) of vestibulectomies if I want to treat the vestibule pain by literally cutting it out of me.

An hour later and I get to drive another four hours back home.

I feel like today I've learned that my pain is not simple. I feel like I can step into some new territory where I have to deal in nuances in order to make progress instead of hoping for wham-bam answers.

I asked the doc if neuropathy ever resolves itself. He said that he's seen it when the pain is due to scar tissue and the like, but entrapped nerves stay trapped. So there is some hope that this pain will resolve if we get it low enough with the tricyclic (or with Neurontin), which I'll keep in the back of my mind but not rest on.

I think I will work on my muscles so I have a shot at getting the vestibulodynia to a lower level. That has receded when I've eaten well and when I've spent lots of time lying down, so I know it's possible. I guess that means I should work on my diet too. Oh dear! I want donuts!

I don't know if I have the energy to do all of this. When I was in grad school, I kept a spreadsheet of my pain and what I ate every day and made some real gains. I don't know why I have less energy now. I guess my life is kind if gray, and it wasn't then. 

So there's the next puzzle. How to get my energy back. My joie de vivre.

Thursday, September 19, 2013

Kate Spade Vulva Dress / Skenitis #4

Do you see the vulvas?

My appointment with Dr. Howard is less than a week away.  I have six more doses (three days) of doxycyline left to take and I've seen no change in my pain.  I also have not (knock on wood) gotten a yeast infection this whole time, three months of antibiotics!, which makes me think I'm on a placebo.

Then I think I'm experiencing an anti-placebo effect, because certainly something at SOME POINT should help my pain, right?

I've been weathering the flopocalypse, aka menstrageddon, aka eternal period

since my visit in May.  First it was weeks of spotting, which ended with a real period.  Then I got another real period.  And another.  And another.  Four in six weeks.  And I'm not falling over from anemia yet?  Anti-placebo effect?

I think the repeated real periods might be from a new psych med, not from the steroids.  Or maybe my body is sending out egg after egg trying to catch up with where it left off before the steroids took over.

Anyway, the intensity of the flopocalypse has kept me from using the valium suppositories or the lidocaine as regularly as before.  I'll have to admit that to the doc next week.  Both are theorized to have a cumulative effect, but I didn't see anything big happening during the weeks that I was able to use both consistently.  Again, anti-placebo...

I'm guessing that the doc will try steroid injections at the Skene's glands at this upcoming visit.  Apparently he can do them without a simultaneous CT scan.  He said he's only performed surgery to remove the Skene's glands three times in his whole career -- and he's retiring this year -- so that's an unlikely future step.

I'm trying not to get to revved up ahead of the appointment, but I will inevitably freak out the day before, as I've done for every appointment at Rochester.  There's just so much at stake with each appointment.

The following Wednesday, October 2, is my seven-year vulvodynia anniversary.  I looked up what the gift is for a 7th anniversary.  Hallmark says:

Traditional: Wool/Copper
Modern: Desk Sets

The image of copper wool underwear flashed through my head, but then I couldn't stop laughing at desk sets.  Desk sets!  A bizarre anniversary gift to begin with.  Buying one for my vulva??

= = =

Happy to be linking up with the Yeah Write Moonshine Grid this week.  First time in a long time!  Click through to read other Moonshiners' blogs.  Probably none about vulvas, though, sorry.