An inconvenient flare...

[No matter what, I am finishing this post that I started 11 days ago ... even if I don't really say anything.  SIGH.]

I have never had a pudendal flare around another person.  I mean, I had one during my birthday celebration, but it was in the wee hours of the mending and everyone else was asleep.  I wanted to wake someone up, but I didn't.

I had one, yesterday, during my therapy appointment.
What timing!
I struggled with deep shame.

Because I have learned how common the main symptoms I have are, I feel less reluctant to describe them.  Less ... well, I don't have a word.  Just less.  So I will say that it was weird to be with someone whilst it felt like someone was shoving something up inside my backside.  To have that very, very, very specific pressure and pain in my rectum, as I think I have shared, is near impossible for me.  It takes me right back to when I was a little girl and a despicable man shoved things inside of me because a part of him wouldn't fit.  Or at least that's the reason I came up with when I look back on the matter.

When I first read the symptom, when I first read that what I was feeling was a MEDICAL symptom, I was so relieved that I about perished.  I mean, I barely breathed or moved or existed with the enormity of the relief.  You see, I knew something was wrong, but I kept being told it was scar tissue from when I was young and there was nothing to be done.  I saw FOUR colorectal specialists over a period of several years and had many, many internal exams, three under sedation, only to be told the same thing.  Looking back on it, I think that they saw my history and just stopped thinking.  Period.

SIGH.

Pudendal Neuralgia is not truly well-known, but it is not actually rare.  Trigeminal Neuralgia is known as the Suicide Illness, but I think that the Pudendal Neuralgia community would also claim that title.  For many, many, many sufferers of Pudendal Neuralgia commit suicide in search of relief.

The pudendal nerve has three branches within the pelvis.  Clearly, the one that flares for me is the one that is near the anus.  However, as I wrote (or maybe I think I wrote but forgot to write), it recently occurred to me that the absolutely unbearable pain I have with pelvic exams, something that is newish for me, is probably the pudendal nerve.  I thought this because I sometimes have vaginal numbness and tingling.  I have actually never told anyone that (I think) because I like to pretend it doesn't happen.  I like to pretend it doesn't happen because I very much don't like to think about that part of my body.  But there is a branch of the pundendal nerve that feeds that area.

I have read of searing, burning, stinging, relentless  pain by some folk with pudendal neuralgia.  What I think must be equally devastating is that some have repeated, if not unending, arousal from the flares in their pudendal nerves.  For men, this must be terrible given that that happening is not something easily hidden.  There are those who cannot sit at all, who go from doctor to doctor to doctor, from surgeon to surgeon to surgeon, desperate for relief.  Pudendal Neuralgia can also cause bladder issues, including great pain and something called interstitial cystitis.

In short, pudendial neuralgia makes life miserable and oft unlivable.

For me, for the most part, what happens when I get a flare is that it feels as if someone is violently and relentlessly shoving something up into my rectum.  Every part of me screams MAKE IT STOP.  PLEASE STOP.  MAKE IT STOP.  It does, eventually, but with every bad flare, I cannot see my way past the next second before me and often want to die.

I say bad flare because I discovered that the baclofen that I started taking for the spasticity in the back of my legs that I then realized was helping the Trigeminal Neuralgia also helps the Pudendal Neuralgia.  For both conditions, the bacolfen blunts the flares, makes them more bearable.  This is especially helpful with the Pudendal Neuralgia, because I am having flares nearly every day now.

I dislike thinking about it, but it appears I made things tremendously worse for me when I worked on the porches.  Hours and hours sitting on my backside has left me with an extremely bothered pudendal nerve.

I now have to sit on a special cushion, unless I want to sit in constant pain.  I read that patients often describe it as if they are sitting on a stone or a rock.  I think that is an excellent description.  The pain was so bad that it hurt to walk and to move, a soreness as if I had broken my tailbone again as I did in graduate school.  Slowly, over time, sitting on the cushion has made that soreness dissipate, but I cannot sit without the cushion for long without that stone pain starting up again.  And when it starts, boy does it linger.

Sometimes the shoving-something-roughly-and-relentlessly-up-my-backside pain is muted to just a gentle whisper.  Or should I say whimper?  For whenever it happens, I still find myself pleading for it to stop.  Even the slightly echo of that pain takes me right back to that terrible place of my childhood.  But I can say that, after the worst flare ever in May, the steady increase of my dose of baclofen has muted every flare since.  Some are still bad, but I can still bear them without fighting this rather intense desire to die, to ensure that I never have to experience them again.

But I do find myself in this existence where I do not want to see anyone or much talk to anyone because I find myself back in that darkness several times a day.  It is not something I can easily explain.  And it is not a place where any of my friends have convinced me that they want to sit with me in sackcloth and ashes as I endure.

When I tried counseling again in September 2015, with the free counselor I am now calling The Crazy Lady (because my therapist thinks she's NUTS as I have slowly told her the things she said that distressed me so), I tried because I just couldn't bear the pain and the memories. I had no coping mechanism to get through the flares.  Then, they were about four or five times a month, not four or five times a day as they are now.  We never got anywhere with helping me cope.  Mostly, she didn't go there with me.  I learned why the last time I saw her: she thought the pain was all in my head.

I was incensed  when she said that.  NO BLOODY WAY!  I rejected her words and though there was no reason for me to go back.  I didn't.  But her words still hurt me even now when I know that she is 100% wrong.  SIGH.

So, back to my appointment.  Instead of using that rather inconvenient flare to address my deep longing for help enduring them, I opened my mouth and rather frantically spoke for the entire session, trying to fill every breath of mine with words that were anything but MAKE IT STOP.  PLEASE STOP.  MAKE IT STOP.  I was screaming inside the entire time I spoke to her.  SIGH.

This past Thursday, I wanted to talk about what happened.  I tried, for about two seconds ... okay ... for about as long as it took me to say that I wanted to talk about what happened.  But, then, every word out of my mouth after that was not about what happened.  I don't know why.  SIGH.

If I were to guess, I think that it is because just as every part of my being is screaming when it happens, every part of my being is also flooded with shame.  And I don't know what to do with that.  I  mean, Dr. Brené Brown's research on shame is helping me deal better with new experiences with shame.  However, it is not helping me with the old.  In part, I think that is the bigger picture thinking that you must do to practice shame resilience is easier when that shame isn't about sexual abuse.  SIGH.

I think I would like to try again to talk with my therapist about what happened.
Maybe.
SIGH.