Health Organization for Pudendal Education

Why have I had this for so long while people on this forum come and go? Those who I think of as old timers I just realized tonight are people who GOT their PNE after my 1st or 2nd surgery!!! This isn't fair! It's not like I've picked doctors that haven't helped people in the past. True, the first doc my insurance picked for me... but after that, I picked one with great stats who helped someone who visits this forum daily!

Why why why has it been 8 years for me of intense PNE, and possibly light PNE since at least college??? Why am I so lucky? Why is everybody else coming and going and getting better faster than me? Why are there new faces? New faces getting appointments BEFORE me! New faces moving past this BEFORE me! New faces getting answers sooner than me, getting help! New faces with pretty houses whose bodies are not nearly as ravaged as mine who complain more and get help sooner, while I just learned to give up... and wait... because fighting never worked for me. No amount of struggle could get me out of here.

I'm in a prison and all the inmates keep getting released... but I'm still here! I got so used to this prison I painted the walls, I hung drapery, and I forgot there was an outside world. But I just looked outside my window and there are people LIVING their lives! Mine died years ago. WHY HAVE I HAD TO ENDURE THIS GREAT MISFORTUNE! I've been a good girl my whole life. A caring person. A person who makes smart choices. I DO NOT DESERVE THIS!!! HOW MANY MORE YEARS MUST I ENDURE? I AM SERIOUSLY ANGRY RIGHT NOW. Will someone please shout in anger with me?????

I know there is an end to this for me, but I do not know when, and I am angry that I have to wait one minute longer to reach that end... because this time is so dead that I'd rather not be aware of it till my body is healed. I hate this life. I love my daughter, my husband, my family... I can't even connect with my friends anymore.

All the things that have died make up a list so large I couldn't begin to recount it... but...
-relationship with my husband is less than it could be
-isolated from friends and family
-house mess i can never keep up with
-body out of shape
-ability to write and perform music (which I am quite good at and win awards for even through this stinkin condition) sits in ruins with occasional glimmers of light, occasional chances to shine
-my hopes... dead
-my dreams... dead
-my thoughts of being able to accomplish anything... dead
-my expectation of happiness... dead
-my only thought... survival... can I make it through today... can I hurt less to be able to make it through...
-ability to receive love... sensation lessened
-ability to receive beautiful things... silenced by the gonging resounding pain
-ability to enjoy even holding my own beautiful child on my lap.... tarnished by the pain of her pressure on my lap... on my sit bones... on me
-I have had life ripped from me in my prime! It is not fair! It is NOT FAIR!!!!!
-I try so hard to succeed at all these things, with lame attempts... I try to break out of my prison with hands tied... I try to dance with others with lame legs... I try... I try... I hurt... I hate... I HATE THIS PAIN that has broken me.

I HATE BEING BROKEN WHEN EVERYONE LOOKS AT ME EXPECTING ME TO BE WELL! I feel such shame over not matching up with expectations at social events... for not having my house together, having my schedule together, having "it" together, whatever "it" is... and I guilt myself for it... and pretend I have strength to do it but just messed up... what an idiot I am!

I was supposed to have my old college friend over tonight... but I can't. My house is a mess. I had a pain flare. I don't know her new husband that well to be this broken in front of him... I don't have energy to put on a show. So my friendship is not gonna be much of a friendship because she doesn't know the extent of my pain unless she'd walked in my shoes. No one except you forum-ites even come close to understanding it... it's impossible for humans who haven't felt this to empathize properly. I wish it were possible. It hurts so much that no one truly knows my needs and understands me (except my husband, bless his heart... I've beat it into his brain with all these years) (and my sweet daughter loves me so much)... but friends... it's impossible to have friends with this! It's impossible to have true friends with this! It's impossible to have a clean house with this! It's impossible to be in shape with this! It's impossible to be anything but broken with this! What else can I do but survive survive SURVIVE... try to survive, barely survive... squeak through another day... make it from beginning to end... make it from beginning to end... the days all blur together... they all blur... the years all blur together.... the years all blur... my life all blurs together... it all blurs together under the tears, the useless tears... the tears that accomplish nothing... nothing accomplishes anything... there is no hope in my heart... but I must cling to the promise of Hope that God gave me... but HOW LONG? HOW MUCH LONGER MUST I ENDURE? (is there a symbol for "crying out loud" like LOL) haha... COL LOL

The silence is my best friend.
I stopped hoping for a life because the hope hurts me so every time it is not fulfilled.
I tried to block out wanting to be better because the ignorance is better than reality.
I hate that I even remembered wanting to be well. Wanting it hurts so much.
Wanting it hurts so much. This ROLLER COASTER of appointments, hopes, dreams dashed on the rocks... basic life needs dashed on the rocks... this Roller Coaster has broken me. I'm broken. So broken. Nobody understands how broken I am... but I have to keep going... living a charade of a life so that people around me are satisfied because they can't accept that I'm broken if my shell looks unbroken. They have no answers. They have no cures. They have no time. They have no solutions. They have no heart.

I was once a girl who never ever got sick. I was once a girl with dreams.
I am now no longer that girl.
If I get my life back, I would accept it with trembling hands, uncertain what to do with it. Fearing I would spoil this precious gift. I don't want to just spend it on myself... I want to spend it for God, to save people from an eternity of suffering. And to bring beauty to the world. And to have a little fun and happiness too...

So what shall I do with this life that I cannot change? How can I make the most of this misery I cannot escape? I can fight to find beauty amidst the ashes. I can let go of my dreams and patiently believe. These answers sicken me right now. I just want to yell so loud that heaven answers with immediate help! "God! I can't fix this! You said You would! Do it NOW!!! Please! I'll never have the perfect attitude about this, or the perfect faith! Just come rescue me! Please! Now is a good time, don't you think?"

ok, so I just broke down in tears w/my friend on the phone, so now I feel better. funny how that helps. gonna have her and her husband over anyway, even if my house is a mess. gonna watch some comedies. God bless those comedians, they make my pain so much easier to endure!

pianogal wrote:
If I get my life back, I would accept it with trembling hands, uncertain what to do with it. Fearing I would spoil this precious gift. I don't want to just spend it on myself... I want to spend it for God, to save people from an eternity of suffering. And to bring beauty to the world.

Then do it, pianogal. Give it back to God when He gives your life back to you, which HE will .

You have an amazing potential to affect millions, not only living in chronic pain, but for Christ, and if you would be so kind, when I get there too, I want to do it with you.

I love you.

A's Mommy

Hi Pianogal,
I read your post and was sorry you were feeling so bad. Chronic pain is really tough and sometimes it just overwhelms you. Whenever I feel that despair taking over, I try to think about the things I have going for me. I am grateful for my friends, family, and that I'm not broke. Things could be so much worse. You still have a shot with Dr. Hibner. Anything is possible. You never know. Thank you for sharing your experiences and knowledge. You have helped me. We are all on your side.

Dear A's Mommy and Donstore,
Thank you for your encouragement!

Sometimes the emotions can be a rollercoaster... but this evening ended on a very good note, just thought I'd mention. Had my college friends over, managed to pick up slightly so as not to be mortified of the house, and we laughed a lot about a lot of funny chit chat and watched some comedies too. I had fun and forgot about my pain for the most part.

I hit a particularly low low tonight, but had a nice high afterward. Every day has its ups and downs. I'm grateful for the ups... gotta focus on them to have endurance. Thank God for the good times.

I think even though I seek solitude when I am hurting, sometimes I hurt less when I am around people. I just need to have people over at my house more often maybe to get my mind off of this while still being in my comfort zone... as going out is too draining.

I am glad you are feeling better. I know how you felt becuase I hit the low raod of self pity also. I agree being around others help you for get about the pain. God will see us through this and this to shall pass. Missy

Pinaogal,

Your frustrations hit very close to home. I think some of the same things you mentioned almost daily. But I am reminded that God never promised us that this world would be easy. In fact he tells us in John 16:33 "I have said these things to you (Jesus speaking to his disciples about his acsension to heaven and what life will be like when he's gone from the Earth), that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world." God doesn't promise us an easy life, but He does promise to give us His grace and even more eternal life (if we have trusted Jesus as our Savior from our sins). Another passage that brings me great comfort is 2 Corinthians 5:1-9

"For we know that if the tent, which is our earthly home, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this tent we groan,longing to put on our heavenly dwelling, if indeed by putting it on we may not be found naked. For while we are still in this tent, we groan, being burdened-not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life. He who has prepared us for this very thing is God, who has given us the Spirit as a guarantee. So we are always of good courage. We know that while we are at home in the body we are away from the Lord, for we walk by faith, not by sight. Yes we are of good courage, and we would rather be away from the body and at home with the Lord. So whether we are at home or away , we make it our aim to please him."

In this present life on Earth we will groan and have hardship and part of that is to make us long for our heavenly home (if life on this Earth was perfect, why would we need heaven or God?). But the fact that God has prepared for His children a heavenly dwelling gives us courage and we should strive to please God whether we are "at home" (in heaven with perfect bodies) or on Earth with cancer, poverty, depression, disabilities, or chronic pain.

I have found when I come to times of questioning, "why me" I must saturate myself in God's word. I too find great comfort in being with other people when possible. I spend a lot of my days at home alone with my young daughter while my husband works, but if I can be with people especially people who encourage me in the truth I find encouragement. Another thing I do is pray. I try to pray for others to get my mind off myself. I have a stack of notecards with other people's names on them or maybe fruits of the Spirit I need (such as joy, peace, patience, etc) and pray for what is on each notecard when I feel the self-pity and anxiety coming on.

I pray every day that God would heal me (whether it be miraculously or through medicine), but I know that if He chooses not to God is still good, He loves me, He has good plans for my life, and I can trust Him. This life may not be easy or what I wanted or thought, but whatever life He gives me is apparently what will bring Him the most glory and that is what is most important.

I also read Christian books a lot. A couple of my favorites on suffering are "A place of Healing" by Joni E. Tada and "If God is Good" by Randy Alcorn. I also love anything written by John Piper.

Praying for you today Pianogal!

Faith,
Thank you for your encouraging words and your prayers! My heart is touched by what you wrote, and I am so grateful to you for sharing your insights and for your prayers!

Thanks you Faith and PG. I so needed to hear those words right now. I am not in my usual cocoon of home. I'm visiting family in Texas and it's really hard for me to relax and be by myself. Luckily I have a very loving and understanding father-in-law. He makes me feel like I'm his favorite daughter-in-law Thanks for the book recommendations!

Hi Pianogal, Faith and friends
I came on tonight looking for some comfort as I feel so alone, confused and ready to give up. I can see that Im not alone. Pianogal, you expressed every emotion and thought that is running thru my mind tonght
I too have a young daughter I have other older kids and a good husband. I hang in there but if I listed the amount of things Ive tried since it all started with IC 5 yrs ago, it would take all night.
I think God may be trying to tell me to give it a break and stop trying so hard to find answers. I am anxious by nature and wake up each day, petrified of the pain I feel as soon as I am upright. If I could relax if would help, but its very hard for me..
I truly relate about the friends and family thing. For the first time in my life, I cried through most of Christmas day. This was very hard for my family and I hate myself for it. I love Christmas, but this year it just seems to mark another year of my life gone..
Pianogal you are not alone and you have much resilience I bet! Its best to see friends. I never turn down an offer to see friends even tho I know it will be physically challenging... It helps..But,
How does anyone explain this crazy ailment to the lucky other moms whose biggest problem is what color designer purse to buy! (at least it seems that way when you hear their conversations!)
I will pray for you too. Hugs to you!
I admire the faith many of you have expressed.
Kath