Too happy not to share

I've been feeling better.

Let me say that again:

I'VE BEEN FEELING BETTER!!!!!

God, please don't let this stop. I am still getting the nerve zaps, you know, those electric shock lovelies that split you in two?? The pain that frozen ice cubes applied against bare skin does not dull? Okay, you get it. I still get them. But, I am doing more. I drove this week. I bought new bedding at Target. Reclined like an old rapper from the 90's in my hooped up Jetta cause I don't want to put pressure or strain on the nerve. That's about the only way I can sit.... either that way, or on a completely hard piano bench at my inlaws. I've been off narcotics for over 2 weeks now. Still on Lyrica 2x a day, Valium 2x a day, and Amitriptyline at night. Oh, and the 'zac (That's Prozac, people) once in the morning. I take a bazillion vitamins: High Potency B-12 complex for nerve health (in drop form, under the tongue), a B complex pill, Vitamin D3 (thanks, Pianogal!), a multivitamin, Ester-C (non-acidic for those IC sufferers out there ), oh and I still take my probiotics, Miralax (although less and less), and docusate sodium (lets face it... I'm too scared to have a difficult #2. My poor nerve needs babied all it can!

Yes, there's a few times this week I've been laid up with some ice. There's never a day I don't ice at night. But I'm noticing now that I get out the ice LATER and LATER in the day. I'm doing Transverse Abdominus exercises out my wazoo. I can't do much else from PT (still causes instant tingling/burning in vulvar area when I squeeze my glutes), but I am trying to be more conscientious about walking without a sway back (like I'm still pregnant). My knees have callouses on them from chasing around after A..... haha. Who cares. It's my baby girl. If I can play with her for a few minutes, my kneecaps can suffer. What's that compared to pudendal pain?

Most importantly, I have been PRAYING and BELIEVING for YOUR HEALING. All of those of you that go to the forums, read my blogs, don't read my blog, whatever. I still call out your name in prayer. I've never been a good "pray-er". God's teaching me. Hallelujah. Who cares how, right? That's what's so good about praying in the Spirit:

Romans 8:26 (New King James Version)

²⁶ Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us ^[a] with groanings which cannot be uttered.

Yes, I'm a pentecostal, holy-rolling (I've never actually rolled, haha) Christian. But, even those of you who I'm friends with who aren't pentecostal and holy rollin' (again, LOL) still love me, right? And that's okay. You can still love me. You don't have to agree w/ me, but you can still love me, just like I love you. And I will still pray for you. I will still believe.

I am not giving up this PNE fight. Peace.

Awesome! Short yet important news bit about Chronic Pelvic Pain

Proud to say, my surgeon was interviewed. Thank you, Dr. Hibner!!! Thank you!!!

WAAAAHHHHHAT is Pudendal Nerve Entrapment/Pudendal Neuralgia?

What exactly is Pudendal Nerve Entrapment or Pudendal Neuralgia? Since I have been broadcasting this blog to the world, many are asking. I figured I would borrow some info from the sites that helped lead to my diagnosis, TIPNA and PudendalHOPE, and put together a little blurb about what it's all about. If you want to read more about it in medical-ese, you can check out the links to these two awesome websites at the bottom of my page.

Taken directly from http://pudendalhope.info

Anatomy

The pudendal nerve is a sensory, autonomic, and motor nerve that carries signals to and from the genitals, anal area, and urethra. There are slight differences in the nerve branches for each person but typically there are three branches of the nerve on each side of the body; a rectal branch, a perineal branch and a clitoral/penile branch. There is ongoing research into the exact areas innervated by the pudendal nerve. PN occurs when the nerve or one of its branches becomes damaged, inflamed, or entrapped.

Symptoms

The main symptom of pudendal neuropathy is pain in the areas innervated by the pudendal nerve or one of its branches. Possible symptoms include burning, loss of sensation or numbness, increased sensitivity, electric shock or stabbing pain, knife-like or aching pain, feeling of a lump or foreign body, twisting or pinching, abnormal temperature sensations, constipation, pain and straining with bowel movements, straining or burning when urinating, painful intercourse, and sexual dysfunction – including hyperarousal or decreased sensitivity. The pain can be on one or both sides and in any of the areas innervated by the pudendal nerve, depending on which nerve fibers and which nerve branches are affected. The symptoms can start suddenly or develop slowly over time. Often the pain gets worse as the day progresses and is worse with sitting.

Causes

There are numerous possible causes for pudendal neuropathy. Some of the possible causes are an inflammatory or autoimmune illness, frequent infections, tension on the nerve, a nerve entrapment similar to carpel tunnel syndrome, or trauma to the nerve from an accident/fall, exercise, childbirth, prolonged sitting, or surgery. Sometimes there is no apparent explanation and some doctors have theorized that the problem can be hereditary due to a musculoskeletal predisposition. Occasionally the problem originates in the spine or sacral area rather then the peripheral pudendal nerve.

Diagnosis

The diagnosis is usually made based on the patient’s symptoms, history, and exclusion of other illnesses such as infection or tumor. While no test is 100% accurate some of the more commonly used tests are the pudendal nerve motor latency test (PNMLT), electromyography (EMG), diagnostic nerve blocks, and magnetic resonance neurography (MRN). Pudendal neuropathy can occur in men or women although about 2/3 of patients are women. It is considered rare and many doctors are just now becoming aware of this illness. Sometimes it is referred to as cyclist’s syndrome, pudendal canal syndrome, or alcock’s syndrome. Pudendal neuropathy can have similar symptoms to another disease or be misdiagnosed as another disease. Those most often associated with or confused with PN are chronic non-bacterial prostatitis, levator ani syndrome, proctalgia fugax, interstitial cystitis, vulvodynia, vestibulitis, chronic pelvic pain syndrome, hemorrhoids, piriformis syndrome, coccydynia, ischial bursitis, idiopathic (of unknown cause) orchialgia, or idiopathic prostadynia. Many PN patients have been to numerous doctors and suffered for many years before finding a diagnosis. Sadly, often PN patients are told their problem is psychological.

Treatment

There are many treatment options depending on the cause of the neuropathy. The most common treatment options include pelvic floor physical therapy to relax the overly tense pelvic floor muscles, medications, pudendal nerve blocks, and if an entrapment is suspected pudendal nerve decompression surgery. Other available options are pelvic floor Botox, intrathecal pain pump, and neurostimulation. The administrators of this website are volunteers who are veterans of pudendal neuropathy.

For all of us PNE sufferers...

God bless as you read this and be encouraged. I am telling myself this too as the nerve zaps and strain are hurting my flesh.

DaySpring E-Cards

THIS IS REALITY FOR US... some words from my fellow PNErs

pianogal in CA (age 34) writes:

feel dispassionate about details of my life bc can't live them fully.

overwhelmed w roads to try.

house. decor. body. image. look. husband. sex blech. friends. music. career. news. finances.

even God sometimes I hate to say.

it's like what can i do. why care.

parts of me care but not enough to solve the giant mess.

obsession w body wanting healing of body so all elements of my broken life can b healed too.

everything is chipped torn dusty broken in a room off to the side... till i can come back to life.

Nick in MN (age 31) writes:

Dear Friends (or acquiantances if you prefer),

I would like to share a bit of what was on my mind today about who I am. Who am I anyway? Is it my identity? I am a husband, son, brother, friend, musician, goof ball, video game addict, insurance underwriter, owned by a cat, and many other things that people tend to be. I have become a PN sufferer but that does not change the other things, PN can't have them! But these are only part of me. Is it how I feel? I'm only 31 but I've had a chance to feel plenty of the things that come with being human. Happiness, joy, sadness, fear, depression, desire, anger, pleasure, downright weirdness, etc., etc., etc. I've been introduced to pain that I didn't think could exist outside of the pits of hell, and have come to find out it could be worse!!! I believe it is always okay to feel the way you do, you don't need to justify it to anyone. It could be argued that these sensations and emotions make up the whole of our existence. But that's not all either. My brain was grinding on this for quite a while and I finally came to the conclusion that I am just me. Wherever I go, whatever I'm doing, however I feel, I am still me and no amount of pain or any diagnosis will ever take that away. God has given me this life; past, present, and future and nothing will ever change that. Now that that's out of my system on to the toast: Here's to all who are struggling with pain right now may you find relief quickly may loved ones surround and support you may the road ahead bring you kindness and compassion may God lead you to healing and peace when you are down may hands reach out to lift you up when you are strong may you reach out to help others who are in need and may you always remember who you are Cheers! *clink*

Nick

S in CA writes:

MY PAIN

My relentless companion

ever there

ever waiting

My pain

Now louder — did it hear its name?

Drumming into me with each footfall

on the pavement

I stop to rest, it smiles quietly.

It lies in wait for me to grow weary

and then it is THERE

LOUD

ANGRY

BURNING a hole in my deepest secret flesh

OW – go away

what do you want from me

what did I do

why do you haunt me

Leave me

Let me be

Let me live

Let me work

Let me love

------------------------------

Pain Rising

The pain got louder. She could feel it growing, tendrils twisting sharply in the left side of her pelvis. How much longer would it be? Would she be able to last?

She shifted in her seat, trying to ease the burning. She didn’t want to take another pain pill. What was it about tapping, distracting the brain? She tapped the side of her wrist and the fleshy valley between her thumb and forefinger, trying to remember the pattern.

Nothing. Just the patient, insistent, throbbing flame.

She sighed. Nothing worked… Not the doctors, the expensive tests and treatments, not the healers, the meditation, nothing. Every time she researched new treatment options and approached a new specialist, she was so hopeful. All the holistic, touchy-feely stuff was stupid, a waste of time and money. Am I crazy, she thought? Did I manufacture this? On some subconscious level, am I CHOOSING pain? Why is this happening to me?

Oh shut up.

Get back to work. Quit feeling sorry for yourself. Are you going to let this screw up your whole life?

I wish I was dead. No, correct that. I wish I had cancer and could go through the chemo and have my breasts cut off or whatever and then get better. Then I could have a life. Or even if I died at least it would be over.

It was the pain, the never-ending, 24-7 pain that was driving her insane. She could empathize with suiciders – it seemed seductive suddenly – just a few handfuls of her pain medication and drifting off to sleep. That would be easier and less messy than the other images she had – of taking a sharp knife and cutting deep, into her urethra and beyond, where the pain screamed. It woke her from sleep, talked to her as she showered, bathed, dressed, tried to work, tried to live, tried to love. SCREAMING, I HURT! I BURN! I BLEED! I TEAR! I HATE YOU! I WANT TO KILL YOU! SCREAM SCREAM SCREAM…. Until she felt like screaming back and cutting into the malicious flesh.

Instead she cried, great racking sobs, took the prescribed narcotics, drew the hottest bath she could, stepped in and waited for the screaming to subside, like a voice that has worn itself to a hoarse whisper.

She lay motionless now in the blessed quiet, willing herself to stay still even as the water chilled. But no use. Within an hour the scream would be loud enough to interrupt her life again, make her put aside whatever she was doing to repeat the ritual. Pain pills, hot bath, check out.

Wife of Mitch in MN (age 47) writes:

Thoughts of a Tortured Mind

How do you cope with watching the person you love from your soul suffer day in and day out? How do you leave for work every day carrying with you the fear that the pain will win while you’re gone? I find myself trying to make plans on how to handle things when he’s gone, trying to prepare myself for what feels some days to be the inevitable. My mother became a widow before her 47th birthday. I’m worried that I will do so sooner than that. How are you supposed to stand by while he writhes in pain with tears streaming down his face, knowing that there is nothing you can do? How do you choose between your selfish wishes to achieve your “happily ever after” and his wish to be released from the pain that never ends? When he talks about suicide, is it wrong for you to be torn between screaming, “No, you can’t do that to me!” and breaking into tears and saying, “I understand. How can I help?” I need him, but I need him to be whole and healthy and happy. My happiness would never be complete if it came at the expense of his well-being. How do you deal with his exhaustion and short-temperedness when you don’t even know how to deal with your own? How do you sleep at night knowing that he can’t sleep because of the pain and the panic attacks? Where do you turn to ease your own pain, when you’re the only person to be there for him? What will he do while you’re out pampering yourself? Where would I turn, anyway? And, who will take care of him? He’s got family, but they don’t even try to understand, don’t even act like they care. They’re too absorbed in their own lives to even realize that he’s in trouble. I hate them for their indifference, for not being there for him. God forbid, but if he did choose to take his own life, I would sever contact with them. They will hate me, because I will not bury him. I don’t need a rock in the ground to remember him, or to visit him. That’s their issue. Maybe I would have him cremated and spread his ashes in the sculpture gardens. I have wrestled with the consequences of suicide before. Does that automatically condemn you to hell? Does a loving God have the capacity to understand that the pain just became too much? I love him. I fear for him. I want to hold on to him, but I want to release him to relief. It’s a battle, and I can’t win. It’s not my battle. I have my own demons to wrestle, but they pale in comparison to his. My demons will go away when he finally finds relief. I pray for his health. I pray for his mind. I pray for his soul. I am useless to do much more as I move through every day watching the person I love from my soul suffer day in and day out. I leave for work carrying with me the fear that the pain will win while I am gone. God, please be with him now and always.

Lean HARD!

More great encouragement sent from another friend (a male) suffering from PNE.

Cast your burden upon the Lord, and he shall sustain you." Psalm 55:22

It is by an act of simple, prayerful faith we transfer our cares and anxieties, our sorrows and needs, to the Lord. Jesus invites you come and lean upon Him, and to lean with all your might upon that arm that balances the universe, and upon that bosom that bled for you upon the soldier's spear! But you doubtingly ask, "Is the Lord able to do this thing for me ?" And thus, while you are debating a matter about which there is not the shadow of a shade of doubt, the burden is crushing your gentle spirit to the dust. And all the while Jesus stands at your side and lovingly says, "Cast your burden upon Me and I will sustain you. I am God Almighty. I bore the load of your sin and condemnation up the steep of Calvary, and the same power of omnipotence, and the same strength of love that bore it all for you then, is prepared to bear your need and sorrow now. Roll it all upon Me! Child of My love! Lean hard! Let Me feel the pressure of your care. I know your burden, child! I shaped it—I poised it in My own hand and made no proportion of its weight to your unaided strength. For even as I laid it on, I said I shall be near, and while she leans on Me, this burden shall be Mine, not hers. So shall I keep My child within the encircling arms of My own love. Here lay it down! Do not fear to impose it on a shoulder which upholds the government of worlds! Yet closer come! You are not near enough! I would embrace your burden, so I might feel My child reposing on My breast. You love Me! I know it. Doubt not, then. But, loving me, lean hard!"

Great Encouragement from fellow PNEr!

My friend, A, who is on the other side of the country and who is a young mom like myself who is fighting PNE, sent me a link to a great devotional today. Everything reminds me of sung scripture, so of course I had a song for it!

Here is the link to the devotional:

http://springsinthedesert.wordpress.com/2010/02/11/wait-for-gods-promises-it-will-be-yours-in-its-due-time/

And here is my video for it!!!

Basically, what I took away from it was this:

Dear child of God, are you with a promise today, regarding your life, your future, your family and your ministry. You just saw it fall down from heaven, but you do not see anything happening yet. God wants to remind you that His words will not return to him empty, it will accomplish the purpose for which it was sent. You might not see it right now. Its working out its purpose…first of all, God is training you, preparing others, changing your environment, creating new opportunities, changing the laws of the country…you never know what God has in mind. If God has promised you a ministry so that you will be a channel to bring forth salvation to the ends of the earth, He will do so. Every encouraging letter you write, every exhortation you say, every devotion you post, every message you speak will not go in vain. You might not see the people you are influencing or the changes you are making in their lives through Jesus Christ, but it will perform its purpose and one day you will see many saved across the world, through you. Let me encourage you with this verse from the bible “For the revelation awaits an appointed time; it speaks of the end and will not prove false. Though it linger, wait for it; it will certainly come and will not delay. ” (Habakkuk 2:3)

So, what I am doing now, going through the pain, the hell, the misery, the tears, the... the... EVERYTHING..... will accomplish the purpose for which it was sent (Isaiah 55:11). I liked the part about how "God is training you, preparing others, changing your environment, creating new opportunities...."

Wow. While the pain still flourishes in the same way that last night's post depicted in its pictures, I guess my focus has shifted a bit for tonight. And I even got to rock A to bed and sing her "Nobody Knows De Trouble I've Seen." Glory! Hallelujah.