The Pain of Pudendal Neuralgia

art therapy workshop, 2011

The Pudendal Neuralgia Pain Menu


This is the Pudendal Neuralgia Pain Menu

As you can see there are many choices in this Chamber of Torture

Chamber of Torture
Pick your Favorite
We have a wide variety

There is BURNING
There is STABBING
There is TWISTING
There is ELECTRIFYING

A rock on fire twisting and turning and pulling my insides apart
Endless stabbings, a knife plunging deep into my flesh again and again and again (hours on end, night after night, weeks, months....)
I plead to die
I beg to die
Acid poured into my pelvis
A stake lodged deep inside my vagina
2000 man-eating ants eating away at my insides

My parents are so scared, I scream and shout, I cannot be alone cuz I am afraid that I may try to kill myself. They are sleeping. I scream. They wake up. I shout "The devil is inside of me. I can't anymore. The devil has taken over my body." I scream and scratch my arms with my nails leaving red tracks. I see my mom's face. She is shaking. She is terrified. I have to control myself. They will have a heart attack. They urge me to get into the bathtub. Their terror makes me calm down. All i want is to die but i don't know how to kill myself and i could not be violent towards myself.

This happened a while back. The next day we got me on Lyrica. I was on no medications. Without medications people commit suicide. Without proper pain management people mercy-kill themselves. Some try and succeed. Some try and do not succeed. Some do not try...

There is so much work to do. I am just spitting it out. I am not sorry if this scares you. I want you to know so that it won't happen to your wife or to your daughter or to you. I want you to know cuz you are one more person that will  know the truth. Pudendal Neuralgia Kills. It kills people just like you who just want to live a happy and meaningful life. People that just want to have and love their families. People like you that just want to be able to look at a flower and see its beauty and be happy in their lives.

People talk about God. I can assure you that God was NOT with me there. I was alone in the corridors of hell, choked and abandoned in the dungeons of suffering. God was not there. He was not there. There was nothing there but pain and my stubborn persistence to suffer it for the sake of my parents. God is inside of me. He is not an external force that is coming to save me. He sorry She or rather S/He (maybe that will be my new terminology for God) did not speak to me in my torment. There is absolutely nothing spiritual about pain or suffering. PNE PAIN is not a difficulty that can be turned into a challenge. PNE pain (untreated and unmedicated) = DEATH = THE END OF LIFE= goodbye life=devastation of family and friends=Suffering and Suffering

I used to have a fantasy of dying in the woods, amidst the deer. Sometimes they adopted me and somehow i did not die. Usually I froze to death or starved to death. A lovely longed for natural death. When I told the 'therapist' that i was seeing at the time about my fantasy of dying in the woods, she said "Well, what's up with that?" A night in my body would have helped her understand what's up with that.

I also used to meet a little deer that was wounded and we used to lay down next to each other and talk to each other. I would ask her what kept her going. She was a small she-deer and she suffered from horrible pain. Yet still she saw much beauty in life and she wanted to live. I learnt from her.

My imagination helped me make it through the nights of terror and torture. Sometimes my spirit was stronger and i met my helpers: the African Medicine Woman, the She-deer. Maybe there were others too but they were alive and real, just far away, a murderous plane-ride away.

I wanted to make a post of the stupidest things that have been said to me,
I will start now

After turning into a skeleton from not eating due to unmedicated pain,
"You have no boobs anymore"

After telling an x-psychiatrist that i am terrified of the pain all the time, that i have flashbacks of being in the excruciating pain in the corner of my room, i was told
"Get a Life"
I wondered what i was living. I thought that i was living my life. Never went back to her.

"Its from stress."

"She is being dramatic."

Oh, this was a good one too
"Pain is part of life. It means that you are alive."

Another really sensitive one
"I want to see you out in the sunshine tomorrow, like other people. It is not good to stay inside."

I am sure that I have more

Oh yeah, a doctor that i called a few times to his home clinic informed me that if i call again he will....(fill in as you wish)

What can I say,

Remembering, how i banged my head against the wall over and over, trying to get my mom to understand that i cannot take it anymore and that this is serious. None believed me. Doctors just sent me to the next doctor. And to the next one.

Pain can make you look like you are insane. But you are not insane. You are in Pain and Nerve pain can take your mind over completely.

I remember reading the PNE forum and reading a message about one of the members. Christopher or Christian had committed suicide. I thought to myself that he is so lucky that he no longer has to suffer like the rest of us. I was happy for him that he succeeded, that he no longer had to suffer anymore.

Today i see things a bit differently. Chris I am sorry that the world lost you. I am sorry that you did not receive the help that you needed. I am sorry, very sorry. Maybe you understand everything. In the same way that I understood you. Maybe when you read my blog (i am inviting you to do so, you are invited to write here as well. ) you too will understand everything.

I know that this post sounds crazy. It isn't. It is all true. And i am so so sorry that it is all true. And i am so so sorry that my father is suffering so much. And i try to live every day with respect and with hope.
And i thank all of those that stood by me while i was going through what i hope was the worst of all of this. Cuz their love reminded me that i was not crazy.

I suffer from Pudendal Neuralgia.

Pudendal Neuralgia is like psychosis of the Pudendal Nerve.

Anyway, I do not believe at all in the word CRAZY.

No such thing exists. People that are mentally ill have a disease in their brains. Why do we stigmatize them and say that they are sick in their souls? They are brain-ill, that is all. Brain-ill. That will be my second new word for the day.

S/He is Brain-Ill.

Love,
Atara