Welcome to HOPE - www.pudendalhope.org

This is where we will make important announcements, accept offers of helpful tips from members, and a place for questions and discussion regarding website and forum operations and procedures.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Amanda » Sat Sep 18, 2010 5:24 pm

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
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby river133 » Sun Sep 19, 2010 9:58 pm

Great to know that we can all still hang out with the same people.. :D . 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....
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Violet M » Mon Sep 20, 2010 3:39 am

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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby florabunda » Wed Sep 22, 2010 10:05 pm

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
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Violet M » Thu Sep 23, 2010 3:31 am

Thank you florabunda. That is very clever -- you certainly have a way with words. ;)
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Karyn » Thu Sep 23, 2010 1:20 pm

What a beautiful poem, Florabunda! You did a great job!
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby LottaNerve » Fri Sep 24, 2010 9:19 am

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
http://icandpne.wordpress.com
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Violet M » Sat Sep 25, 2010 3:10 am

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.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Judith » Sat Sep 25, 2010 4:20 am

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
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Re: Welcome to HOPE - www.pudendalhope.org

Postby KRISG » Sat Sep 25, 2010 4:34 pm

Thank you florabunda ..
I enjoyed you poem allot !.
Thanks !
Bicyclist / IT guy / sitting allot
Then pain -- but only when sitting--
took me 3 years - nerve blocks etc to find out that it really was the surface of a chair that could help.. Now . After 5 years doing well -- on a special chair - special recumbent bike- special car - but ..almost without pain !!
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