12 Years

October 2 was the twelve-year anniversary of my pelvic pain's arrival.

The pain actually began gradually.  In August and September of 2006, I started to get very low-level pain in my lower abdomen that I attributed to not drinking enough water.  It was constant but very quiet, like a minor headache, and I hardly noticed it.

Then, on Friday, September 29, I met someone new and hooked up with him.  The next morning, I regretted not peeing after sex, as we are advised, but thought the discomfort was fleeting.  It didn't feel like a UTI exactly, and I again had the vague sense that if I drank more water, the pain would subside.  By Monday, however, the pain was full blown, and my new life had begun.

My pain in those early months was not constant in the way it would grow to be.  It cycled up and down.  When I peed, it would catapult up the scale and ring on afterwards for a half-hour or so.  Then it would quiet back down.  It also seemed to cycle relative to eating and other activities, though I didn't spot a pattern.

Frankly, I wasn't looking for a pattern in the first couple months.  I thought I had an atypical bladder infection that would resolve with the right antibiotic.

The first doctor diagnosed me with a UTI and gave me antibiotics for that.  The second doctor diagnosed me with chlamydia and gave me antibiotics for that.  Both diagnoses were wrong and I ended up getting an ultrasound of my bladder and kidneys to make sure I was eliminating all urine when I peed.  I was.  The next doctor tried me on a month of Macrobid, which didn't work either.

As the months passed, the intermittent stretches of low pain went away.  My muscles were kicking in, trying to hold my pelvis steady because movement made the pain worse, and eventually that muscle engagement became dysfunctional.

I went through countless gynecologists and midwives, a few of whom were incredibly condescending.  It was a horrible stretch of time.  Finally, eight or nine months after the start of the pain, my mother's gynecologist diagnosed me with vulvodynia.

It's hard for me to write past this point because I get so angry.

Right when my pain flared up, I saw about five urologists who could've diagnosed me with interstitial cystitis.  IC is not common, but it's not obscure.  It's well within a urologist's wheelhouse, and any sustained pain resembling a UTI should be investigated as possible IC.

I saw six or more gynecologists and midwives who could've diagnosed me with vulvodynia.  Vulvodynia can affect up to 15% of women at some point in their lives, depending on which statistics you're looking at.  It should be one of the first things doctors consider when women have unexplained pelvic pain, yet I was told to change my toilet paper, bathe in oatmeal, and use Aveeno.

If a urologist had caught the IC, I might not have developed vulvodynia.  My pain might've remained cyclical and not become constant.  My pain might've receded to a low level with intermittent spikes.  Note how I'm not saying we could've cured it.  It's possible, but I don't like to think that far.

Early on, I was able to have sex without pain so long as my bladder wasn't in the mix.  Pain-free sex was gone by the time I started visiting gynecologists.

If a gynecologist had caught the vulvodynia at the start, we could've fought it before it acquired more and more layers to the point of becoming indistinguishable from the bladder pain -- to being worse than the bladder pain.

It could've saved me so much had any of these doctors taken me seriously.  Had they looked at me as chronic and not acute.

No use looking at what's lost, but all the same, I have a really hard time being high-minded about it.  Maybe it's because my loss isn't just past tense.  The pain stands between me and my senses, between me and my thoughts, me and my hopes, me and experience every second.  I still do not hear music like I used to.  The smear of my pain is always there dulling it.  The world is constantly muted.

The past week has been terribly difficult and I don't know why.  My anxiety is intractable.  It's wires down my skin.  I've tried to zero it out in multiple ways, but so far nothing is helping.  I've also been exhausted, again in a different way than normal.  I rotate through possible causes in my mind -- season, weather, food, work, pain -- but there's no history for any of the current variables producing this kind of anxiety and fatigue.

When I'm less tired and less overwhelmed emotionally, I'll try to post about my diet experiments and some progress I've made in understanding the mechanism behind my pain.