Bringing Awareness of Pudendal Nerve Entrapment to Peripheral Nerve Surgeons

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.

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Discussion

  • Pauline Gower 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.

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    Pauline Gower

    3 weeks ago Comments: 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.
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    Nick Trenchard, United States

    11 months ago Comments: -
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    Sarah Matthews, United Kingdom

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