Health Organization for Pudendal Education

Hi everyone that understands this pain but this is so heavy me the pain is too much the surgery is too scary i feel like i amm being backed into a corner i am on medication for deression aniexty pain nerves but i cant god is not listening to me im not saying i am going to leave this earth now but i know my life has gotten the short end i dont see my daughters getting married i dont see the future, even being put in a hospital can not change my thoughts, i have physical pain they cant take that away, i am not going to be put away., i cant have sex anymore we tried the other night forget its gone, and i didnt even have surgery yet.
I should have listend to my heart this time and not have gone to another dr but i didnow i pay for it. I dont even recongize myself my hair is gone, i aged so much,my daighters have already lost their mother i officaly died in august of 2009. Its like I am dead now, i cant do nothing..now that I cant walk its even worse, and being a wife.. i talk to a therapist me and dan both go to oneshe dosent understand. Dan says he loves me i know he does so much..i hate watching him seeing him look at me when i am screaming out in pain and he is so helpless, he is getting tierd not just me. I cant beleive this is my life right now, but not for much longer I dont know whenI am going to leave, maybe i will have the surgery and then i wont be able to take that pain and then will be it. Lyrica is that going to help, narotics they make me sleep give me a headache make me sick to my stomache. A pain pump for the rest of my life maybe, will it work??
My parents suffer everyday there daughter is going through this horrid pain and they cant help, they dont want me to have surgery again, the hysterctomy already did this to me. Hearing all this recovery after surgery is hell, iim in hell now do i want more. I lost my beautiful hair, i hate wearing a wig its not me i miss my hair. This has taken eveything away from me except the love from my family. But I am a burden to them I feel it I see it.
My pastor knows the suffering he said i will go to heaven, not that he wants anything to happen to me, but we had a long talk, now I know why people take their own lives its not selfish the pain is too much how can someobody in pain like this. This is the worse pain anyone can go through except for burn victims i think but they can even be fixed. I rather be parazlixed than this. Anywyas there is alot of venting here sorry for this dark thoughts but i know i am not the only ones that have had then.
Hope everytime i feel some its taken away from me so fast. I wish LOVE and kisses and hugs could take away this pain I would be healed by now. I want to drive i want to go to the mall with my daughter withougt pain, i want to sit in the car, i want to sit at the diner table without cringing in paiin but no i lay here with pain medsin me.. and ice on meto freeze the burning, what a way to live cant finish painting my daughters room that dan is doing i use to all this. I did it all. Is that way God did this to slow me down, to show me and my husband that sex isnt eveythng is a marraige, he is the one that had the affairs not me, god help me he should be having a buring penis and a buring buttocks and cant sit. I am a good person, so much i could be doing, how do i do it in pain. ok enough thouhts for the day. In the moring is it fair to my kids to hear and see there mother in pain and crying out and cant move to help them, they are helping me that is not right, waking up in the middle of the night and my husband had to get up at 5 to drive 1 1/2 hours to work, they dont need this. They need a real life Dan is only 39 thats it.. he has so much to live.. why with me is chronic pain cant have sex looks nothing like i did, in bed, cant go out, he deerves so much i love him so much i would die for him. thanks for reading
missing so much and scared is not the word anymore FEARAlisay

So Alisa, when is your appointment with Dr. Hibner? Maybe it would help you if you tried to do a countdown, and just deal with one day at a time.

"just deal" thank you . That helped. I have been doing it one day at a time and those one days have turned and into Ground hog day and night

I never told you, "just deal". I said, "just deal WITH ONE DAY AT A TIME"... instead of thinking about the future and thinking what a catastrophe about all you worry you won't be able to do...just get through one day at a time and put it behind you. Sometimes when you have a countdown of days, it's psychologically helpful to see that number keep getting smaller and smaller until it's over. Your choice then is to decide if you can find anything good in those days, one at a time. Of course, however you want to handle the time is your decision.

Dear Alysa,

I know how you feel. I had a hysterectomy that may have caused this pn pain by way of scar tissue. I struggled for two years (am still struggling) but finally decided that surgery to release possible scar tissue forming after the initial surgery is probably the best way to go. I'm in the process of figuring out how to have a definite diagnosis and deal with it by yet, another surgery. That's a hard one to accept but I believe it's my best choice.

Please try to manage your pain better. If you don't get a hold of it, you will sound (excuse my crudeness) like a nut job whenever you're trying to get help. I know, because I did and doctor's didn't take me seriously or wrote me off as a nut case. I kept blaming myself for chosing the hysterectomy which I believe caused scar tissue. There is no way for a doctor to know who is going to develope debilitating scar tissue no matter how good he/she is. Scar tissue can develop after any surgery. My grandfather had a pace-maker years ago and, he developed painful scar tissue, so painful that he took his life. I could not do that to my family.

Since I began managing my pain, I feel like I have more control over the situation. Most days are hard, some are easier and I begin to feel hope. I am more rational when speaking to docs. Also, the folks who've had surgery here are a blessing in that they can give you lots, and lots of good advise. In the end, it's up to you to decide. I want this to end and am willing to accept 60-70% improvement over nothing. As mentioned in other posts, there are some folks who are worse but I believe the fellow PNer's who've gotten better out-weigh the numbers of those who've gotten worse.

God will give you strength and mercy get through each day. I can say this, I will never be the same person I was before my hysterectomy. I believe I've learned to appreciate all the small things in live such as the bird chirping outside my window right now, sunshine on my shoulders, a child's laughter, etc. It seems corny but it doesn't take much to make me happy these days. We PNers have been given a unique gift that the rest of the world may never know. Life is so precious, live each day as if it were your last. Grab your family and hold the close.

I'm here for you if you need to talk. If you prefer a private message that's fine too.

Blessings and lots and lots of hugs,
Ms. Rivers

Alysa

I feel sorry for you and the struggle you are going through right now. Like you my PN problems began through a hysterectomy over 8 years ago. I can understand the frustration and anger that you feel: a routine operation has left you trapped in a body that you dont want to be in.
There are however many things tha tyou can offer to your family and I ask that you concentrate on one thing everyday and enjoy every moment even if it is tainted with extreme pain. Believe me i have lost everything through my pain - my family life, my kids and my marriage but I have struggled on my own to gain my confidence and strength so that I can live within my limitations and I do enjoy life as best as I can...its not perfect but with cushions, ice, medications and many calming influences I manage to smile often and laugh often too.
If you want to email me please feel free to do so.

Take care