Health Organization for Pudendal Education

A warm welcome to all our new members and thank your supportive messages to us as Directors of HOPE.
It is great to see enthusiasm for the continued spread of information about PN issues, we have all been to the depths of despair where we did not now what was wrong with us, how could we be helped and moreso how could we live with this terrible pain/condition.

By helping on the Forums since 2004 I have not only found many friends and many treatments but it has given me the chance to share with others as I will never forget the initial stages of this condition. This has been my way of giving back to the Community and I have always said I will do this for my life because I owe my life to my good friends and their support and understanding.

Amanda

Great to know that we can all still hang out with the same people.. . I had a reply from someone but the site changed just when I was to read the response... I will have to try again..
..Would someone please explain to me why all of my nerve damage is on my left side but my leg and butt pain is all on the right side. .This just started a couple of months ago, these new pains... It will be 3 years in Dec. since the burning and not being able to sit started... He said we will know by Dec if I will be having surgery...I will be cancelling my appointment with Dr. Hibner if all goes well with Dr. A. Dear Lord I sure do hope so.... I would love to keep the appointment with Dr, Hibner also, but the expense of it all takes care of that.....I told Dr. A that the diahrea and the pn started at the same time... he said that this thing can start 20 years before the pain begins... The diahrea was because of the pne. not the other way around.... interesting....

River, I've moved your question to a different topic by itself so the answer won't get lost in the middle of this topic. Click here to go to the new topic. http://tinyurl.com/268abfa

Violet

I wrote this earlier hpe you enjoy and take it as meant

Sometimes I lay wide awake
How much more can I take?
No one there who understands
The first to make their demands
The whole thing is where I am
No one else can give a damn
A life in danger of solitude
A life poor and so crude
But in my soul I have fight
I still have self driven might
I will fight on and rid the pain
Maybe life will show me a gain
To help others all the same
Is my one and only game
But to have provided for my brothers
Maybe just help so many others
So try and remain constructive
Nothing gained by destructive
Then life and soul can all move on
What we have left in past is gone
But that takes a lot of fight
So march on with delight
Between us we will bash the pain
Ultimately that is the only gain
So good luck message board
Cheap to those who can’t afford
Great big costly bills
Analysing all those evil ills
Good luck to all those on here
Just to allay that fear
Good luck to HOPE all new
Stick together just like glue
If you really desire success
Pursue a little happiness
Good luck

Thank you florabunda. That is very clever -- you certainly have a way with words.

What a beautiful poem, Florabunda! You did a great job!
Warm regards,
Karyn

Hello fellow PNE'ers,
I just found out about pudendalhope.org and so happy to find you! Greg at the TIPNA board posted that you had started and directed us to check out our fellow website. I was not aware of other forums before, but I am very glad to have the opportunity to join HOPE. As my journey (ha, that is a nice way to put it) with PN and PNE (and IC) continues I need all the help and support I can get. I also find relief and meaning in offering support and caring to others who are suffering with this horrendous disease/condition. Many times my day has been turned around by talking to another person who is suffering and knowing that I made a difference.
I am in a fragile place right now as I just had PNE surgery and am starting my 4th week of healing. (Dr. Hibner, St. Joseph's Hosp., Phoenix, AZ - TG approach, date 8/30/10) My pudendal nerve on the left side was entrapped near the sacral attachment, or sacrum, by "significant" scar tissue which adhered the nerve to the sacrospinous ligament. I was told multiple times by different doctors and his P.A. it was no wonder I was in so much pain. This was very validating as I had gone for years from doctor to doctor who said nothing was wrong, then started several years of physical therapy, some by PTs who didn't know what they were doing and actually hurt me worse. It was a long, hard slog and I fell into depression at one point. When I finally decided on the surgery, it was a relief.

Anyway, didn't mean to go into my whole story here. I am just glad to be here. Right now is a hard time because I have to be very careful so I heal well and don't mess up the work that has been done to free my nerve! I am finding that my brain won't shut up - it starts talking to me and saing things like the surgery isn't working, I still hurt, I still can't move very well, I'm going to be an invalid forever, in pain forever, etc. etc. I have suffered for 15 years with pelvic pain, starting slowly for the first years and finally turning into a monster in the past 3 years or so.

Thank you to those of you who made this website possible, and have worked so hard to have it up and ready for me and others! I agree, we are all family, in this together.

Sharon

Sharon, I think many of us go through the thoughts you are describing after surgery -- wondering if it was the right thing to do. You may actually feel worse for a little while because the nerve has been "tampered with". It will take months, not weeks to get over this so take it easy like you are and don't try to do too much at once.

Sharon, welcome and I wish you the best with your surgical recovery. No matter what kind of surgery people have, there is often that post-op depression and doubts, but certainly PN surgery and the long recovery can lend itself to worries.. just happy that you have found this "new" group and please share your recovery here.
You certainly have had a long history and have went to some great doctors and pt's. I was wondering how you finally made the decision for surgery and if Dr. Noblett and Julie Sarton supported that decision. Will you be doing post-op PT, and if so, who will be doing that?
I just ask, because I am wondering if opinion has changed a bit in the PT community.
Sending healing thoughts your way,
Judith

Thank you florabunda ..
I enjoyed you poem allot !.
Thanks !