Skip to main content

VICTORY!! THE AMERICAN SOCIETY FOR PERIPHERAL NERVE HAS OFFICIALLY AGREED TO PRIORITIZE PUDENDAL NERVE ENTRAPMENT IN THEIR FUTURE CLINICAL EDUCATION PROGRAMS!! THIS IS UNBELIEVABLE NEWS AND I AM SO PROUD OF WHAT WE ACCOMPLISHED TOGETHER!! NOW WE WATCH CLOSELY TO ENSURE THESE NEW STANDARDS REACH EVERY SURGEON IN THE FIELD!!

January 28, 2021

Bringing Awareness of Pudendal Nerve Entrapment to Peripheral Nerve Surgeons

Bringing Awareness of Pudendal Nerve Entrapment to Peripheral Nerve Surgeons

🏆 Won — 457 supporters Verified

Final supporters

K
Kerri F.
A
Alberto g.
R
Ruthann H.
C
Cheryl R.
M
Michelle K.
J
Jenny H.
C
Cliff L.
R
Robert C.
P
Pauline G.
S
Someone
+447 more
Started by Anonymous 14 years, 10 months ago
To: Dr. Ivan Ducic, President, American Society for Peripheral Nerve, and fellow surgeons, residents, speakers, and members of the ASPN:


There are only a mere handful of surgeons in the world who are offering surgical decompression of the pudendal nerve and its branches. While we, the patients, are very grateful for the work and dedication of the surgeons who are treating pudendal nerve entrapment, this petition comes with extreme urgency as so many continue to suffer.


Currently, there is no standard of care for patients with pudendal neuralgia/entrapment and patients typically must undergo various tests in different cities by different doctors such as EMG, pudendal nerve terminal motor latency test, Botox injections, pudendal nerve blocks, and trials of numerous drugs while waiting long periods of time to obtain appointments. The current success statistics of pudendal nerve decompression surgery, according to the publication by Robert, et al (which are very debatable and perhaps inaccurate) are 33% cured, 33% somewhat better, 33% no change, and 1% worse. Better results need to be obtained.


The majority of patients suffer silently and terribly, with an extremely poor quality of life because of the sexual, physical, financial, and social limitations that this disease causes. Additionally, patients are constantly burdened with the cost of flying all over the country and even the world to the limited number of specialists, and fighting insurance companies to pay for treatment.


We, the undersigned, desire that more attention be given, effective immediately, to one of the most important peripheral nerves in the body. We request that peripheral nerve surgeons in America and worldwide sense the urgency that pudendal nerve entrapment entails, and develop appropriate and timely diagnostic testing and successful surgical treatment for suffering patients. We implore you to discuss this important site of nerve entrapment and injury with your peripheral nerve colleagues at your upcoming American Society for Peripheral Nerve conference. On behalf of all PNE sufferers, we are eternally grateful.

Updates

January 22, 2015

I HAVE BEEN SPENDING MY ENTIRE WEEK REACHING OUT TO SURGICAL SOCIETIES TO DEMAND A BETTER TREATMENT PATHWAY FOR US ALL!! READING THROUGH EVERY SINGLE ONE OF YOUR COMMENTS GIVES ME THE FUEL TO KEEP PUSHING THESE DOCTORS FOR REAL ANSWERS!!

Reached 100 supporters

January 3, 2012

9 Comments

R
Robert Ché McColl
11 years ago Featured

feel the pain they made me feel was all in my brain,feel the pain that would make you all insane I'm strong Il stand up all night. PNE tell them all il fight

M
Michelle Kinley
11 years ago Featured

I have PN, I HAVE TERRIBLE PAIN EVERY MINUTE OF EVERY DAY.. MY QUALITY OF LIFE IS GONE :-( I used to be happy, I'm 35 and haven't had a pain free day in over a year..

A
Anonymous
11 years ago Featured

I've had pudendal nerve damage since prolapse surgery in February 2009. We desperately need awareness for surgeons operating carelessly causing this problem. Please help.

J
Jenny Hall
11 years ago Featured

I have suffered pudendal nerve damage symptoms since a traumatic vaginal delivery 2 years ago. It has ruined my quality of life. I can't find any medical help after trying for a year. Suicidal because of the symptoms and being told it is all in my head.

R
Robert Ché McColl
11 years ago Featured

I have found what no doctor in the United kingdom said said existed.my life has been a living hell for 8 yrs told I was imaging all my symtoms lost family friends and the girl I loved not to mention the 1000s of pounds in private investigations. We will be taken seriously l.Feel the pain.

P
Pauline Gower
12 years ago Featured

I desperately want to bring pudendal nerve awareness to the UK. I suffered pudendal nerve damage during surgery, by a careless surgeon, totally unaware of this nerve. He refused to believe I had a problem and treated me like a liar. I have tried to take my own life. I wish I'd died during surgery. It's nearly 6 years now of constant pain, sometimes so unbearable I have to take to my bed for days.

A
Alberto garcia ronda
7 years ago

Please help with Pudendal Nerve

J
Jenny Hall
11 years ago

I have suffered pudendal nerve damage symptoms since a traumatic vaginal delivery 2 years ago. It has ruined my quality of life. I can't find any medical help after trying for a year. Suicidal because of the symptoms and being told it is all in my head.