Saturday, August 04, 2018

The keep silent part...

I want to write about something that is inordinately uncomfortable.  But the longer I keep it hidden, the harder it is on me.

If it can happen once, it can happen again.
If it happens twice, then I think that is my future.
I despair over my future.

I am not being pessimistic.  I am looking at the patterns in my life, particularly in my body, and making a logical supposition.  The former is what I have heard from others, which is ever so hurtful.  The latter I have heard from my therapist, who, as a former nurse, understands.  For that, I am grateful.

The pudendal nerve runs down both there right and left side.  It is my left nerve that is troublesome.  And the pudendal nerve branches thrice on each side, controlling functions in your pelvic region.  For me, my symptoms have all been anal.  To be blunt, when I have a flare, the pain feels as if something is being inserted into my backside.  It is pure torture, because it reminds me of childhood sexual abuse.

It is stool moving along my colon that triggers the nerve.  Until I actually go to the bathroom, usually, the flare does not stop.  But, most often, the nerve is triggered well before it is time to actually go.  So, I have 90 minutes to two hours of pain ... or thereabouts.  Pain and flashbacks.  After I go, it takes about a half hour for the nerve to calm down.

I am filled with horror.
And shame.
And I want to die.

Each and every time.

Baclofen—thank you Jesus—added to the increased gabapentin, once I got to the max dose, greatly reduced the frequency and intensity of the Trigeminal Neuralgia flares.  And the baclofen greatly reduced the frequency of the Pudendal Neuralgia flares.  But they still happen.

And they are worsening.
They are worsening because the pain has expanded to other parts of my body.

Thursday, I had a flare that triggered such pain that I was absolutely convinced that I had another ovarian rupture.  I was trying to decide if I should go to the ER and kept putting it off because I just don't want to be in an emergent situation and needing to be examined.  I am just not ready for that.  It was at the very height of the pain that it struck me what was happening.  It was stool and that damn nerve.

The reason I knew it was because the nerve has also started affecting me in a third way aside from pelvic pain.  It is terribly difficult for me to even write this, because it is something about which I do not speak.  However, the pudendal nerve can also affect ... a flare can trigger the response a body has expressing pleasure after lying with another.

The unspeakable about sexual abuse is that your body can betray you whilst you are being abused by that physical response.  It is the only time that I have experienced such.  It is not something that I care to experience again.  But, twice now, a flare has triggered that response in my body.  Started it, I suppose is more accurate.

This second time was worse in that it confirmed to me that things were changing with my pudendal nerve.  I cannot fathom a life being tortured this way.  Because, for me, it is torture.  The sensation and the flashbacks.  I want neither.

When I think about having to endure such sensation on a regular basis, along with the pain of the flare, I just ... I feel bleak and lost in a blackness that I must escape immediately.  It took everything, everything not to immediately effect my departure from this life the first time it happened.  And the second was bleaker and blacker.

But there is this tiny part of me that clings to the reality that I have been unbelievably blessed when it comes to Pudendal Neuralgia.  Most folk do not respond as well as I have to medication.  The Pudendal Neuralgia support group I'm a part of on Facebook is one of the saddest places on earth.  The suffering is so great.  The frantic and frenetic search for help.  The desperate procedures some are willing to risk.  Folk have constant burning, stinging pain.  They have constant ... sensations.  They have terrible bladder dysfunction.  They cannot sit at all.  They have an agony that most people cannot even begin to comprehend.

You cannot compare suffering.  Mine is enough for me.  But I can appreciate that I have been blessed by my response to baclofen and gabapentin.  I have been blessed.  And spared.

Still, I would have said that I could not endure more than the anal pain.  And now I have more.  And I cannot really speak about it.

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