Wednesday, July 31, 2013

Anxiety and normality

I wonder if I would have mental problems to the degree I do if I didn't have chronic coochie pain.  Thinking about that alternate universe isn't helpful, but I am in a phase where I am really pissed at vulvodynia.  My anxiety is so high these days that I feel like I'm in heart-attack mode all the time, and I know it's my stupid crotch putting me there.

I need to relax, fully, somewhere.  I lie back on my bed to meditate and when my mind drifts, it drifts to funny things.  So there's background noise that is trying to help me calm down.  But at some point I get jumpy, and a worry sprouts, and I find myself opening and closing my eyes, fighting the worry down.

The way my heart is beating these days, it's like I'm in a screaming match with someone.  I don't attribute it to vulvodynia.  I don't make the connection.  But there's the endless period, the menstrual accoutrements, the lidocaine, the valium, the antibiotic, waiting to see if the treatments will work, food, sitting, libido, wanting to date again before I die, standing here at my desk feeling like I've got a prickly pear between my legs.

I've read that unpredictable work can be stressful.  I think my pain's unpredictability stresses me out too.  It's all over the place and I never know where it'll go next or why.  I never know how it will react to a set of variables.

My cooch sets off my anxiety which wears away at my quality of life, and I'm feeling like a void right now.  I want to be normal.  As normal as I can be.  People say there's no such thing as normal, but there is too.  It's a realm, not a single figure.  Bell curve.  Majority.

I think we've found meds that mostly control my mental illness, but they don't make me a superhero.  I tell myself, "No one would be able to handle vulvodynia without going crazy."  It'll sink the most normal ship.

If my vulvodynia is a permanent condition, can I be normal despite it?  And if I can be normal, what treatments will it take to get me there?

Friday, July 19, 2013

Skenitis regimen update #2

I don't think Feedburner sent my first skenitis-regimen update out via email, so if you didn't read it, it's here.

The lidocaine continued to burn, so I ordered some from a compounding pharmacy.  The compounded solution has no peppermint oil in it, and I haven't noticed any burning from it.  Yay!  Peppermint oil + vulvodynia = huge mistake.  Beware.

However, I haven't noticed much benefit from the lidocaine either.  Maybe??  I think I should feel some numbness, but I don't.  I've heard that using lidocaine over time can improve pain, so I'll keep at it, but I don't think the individual applications are providing much benefit.

Valium Suppositories
Again, the Valium might be helping??  But if it is, it's not obvious.  I still get pain flares, and I don't seem to have had an overall drop in my pain levels.  But again, I think there might be a long-term benefit from the suppositories, so I'll keep at them.  Plus, the Valium is intended to help with muscle issues, and those may not directly influence my vulvar pain.

I was still having scary episodes of drowsiness that I suspected were a side effect of doxycycline combining with my other meds.  The internet has no comment on doxycycline interacting with those other meds in ugly ways, so here, I am the precedent.  I stopped taking both the Neurontin and the oral Valium and I no longer have problems with drowsiness.

I was doing fine on the Neurontin-Valium combination (plus all other meds) before I started the doxycycline, and it sucks to have to stop them.  Neurontin was helping my pain and oral Valium was helping my anxiety.  Dr. Howard said I should have minimal bloodstream absorption from the vaginal Valium, but I wonder if this is another BMI issue, like with the steroid shots -- most people have no side effects from them, but my last period lasted 4.5 weeks, or maybe longer as it's still sort of doing something down there, and it's because the steroids have a greater effect on a body with a low BMI.

Stopping the Neurontin isn't a huge loss.  I think I'd have to take Neurontin at regular intervals throughout the day to really benefit from it, but when I've tried that in the past, it has also led to scary drowsiness.  I've read about topical gabapentin (gabapentin is the generic of Neurontin -- I take the generic of everything, but I usually use brand names), so maybe I'll ask the doc about that at my visit in September.

Besides the drowsiness, queasiness has been the worst side effect from the doxycycline.  I have to take it with food, and sometimes it seems I take it with the wrong kind of food and I still get queasy.  It's manageable, though.  Otherwise, my belly is a little bloated, but I have yet to feel yeasty, which is awesome.  But maybe that's because of the extended-period thing -- my period always kills off minor yeastiness.  I think it must be a more acidic environment than pre-period.

I do wonder if antibiotics caused my vulvodynia in the first place.  Bactrim and Cipro, used to treat UTIs, both give me level-10 pain -- did I take them too much?  That's one theory about what causes vulvodynia.  Thankfully, doxycycline appears to cause me no pain.

Now's the point in the blog post where I get too frustrated with the whole thing to keep typing.  There are too many questions.  For example, right now I'm trying to google about how long it should take for a three-month course of antibiotics to start working.  Should I feel something by now?  I see six weeks, eight weeks... I don't suppose it would kick in after a month and require two extra months to get all its work done.  But this is like the steroid shots -- waiting for evidence that we've got the right diagnosis, and time is ticking past...  My psychiatrist told me that it takes a while for the antibiotics to get through the inflammation that a long-term infection causes...

And if this treatment doesn't work, we at least know it probably isn't a bacterial infection, especially with a broad-spectrum antibiotic like doxycycline.  Then it'll be back to the drawing board, more and more patience patience patience.

Tuesday, July 16, 2013


One of my friends asked me recently how I manage not to go crazy living with constant pelvic pain.  I don't know that I had an answer for her besides, "What else can I do?"

Today, in the process of decluttering the apartment, I came across a Scientific American magazine from March 2011.  It's the only one I've held onto from that subscription, and I remembered why as soon as I saw it: its cover story is "How Minds Bounce Back: Where we get the strength to go on."

I hadn't read the article yet, so this evening I sat on my balcony and read it as the sun set.  Here's the takeaway: almost everyone recovers remarkably well from traumatic events.  90% of us.  The article goes into studies confirming the claim -- for example, slow-motion video of recent trauma survivors showing that, indeed, their eyes are crinkling up when they laugh, indicating that they are laughing genuinely and not out of politeness.  I experienced that particular one myself when my uncle died unexpectedly a couple years ago.  I climbed the stairs into my grandma's kitchen, sobbing, and hugged her, and then, a moment later, said, "You're so small!"  "You're so big!" she said.  And we both genuinely laughed.

Chronic stress is, of course, different from the stress of a traumatic event, so the article doesn't specifically address a stressor like vulvodynia except in this one phrase: "unrelenting grief, like clinical depression, is just too much to bear, overwhelming the mourner."  That's a pretty bleak sentence, and it does apply to pelvic pain: we grieve the loss of our former bodies, for example.  But I still think resilience applies in cases like ours.  One point of evidence for me is that I hardly ever dream about vulvodynia.  The two dreams I remember are these, and they are years old:

1. Dr. House, from the television show, said he could cure me of vulvodynia, but he was going to make me cry first.
2. My crotch turned into a jellyfish.

If I've had stress dreams about chronic pain or doctors or treatments, I don't remember them.  That suggests to me that this bad stuff isn't sticking with me, even as I pass through it daily.

Within the past month, both my aunt and the family dog died.  And both times, I saw resilience in the people around me.  Crinkles at the corners of their eyes even as they wiped away tears.  Debates about current events the first day the dog's collar hung on the doorknob.  Knowing that these actions are not out of place during times of mourning helps me understand how I can cope with vulvodynia: I cope because I'm built to cope.  We are built to cope.

I have a new confidence after finishing that article.  Not about vulvodynia, though; all the article did was explain how I deal with it.  My new confidence is about my mental illness.  My entire adult life has been governed by bipolar disorder and anxiety.  Challenge, failure, embarrassment.  But as it turns out, I have a quiet, solid core.  The two dreams I remember having about vulvodynia are punchlines.  I don't know if there's a better indicator of resilience than that.