Sign Petition

Petition For More Research, Awareness, Training For Med School Students & Doctors For Chronic Pelvic Pain Frequently Caused By Pudendal Neuralgia/PNE

1,077 Signatures Goal: 1,000

Chronic Pelvic Pain can be caused by Pudendal Neuralgia (PN).
This is a factual statement, backed by the internationally accepted, diagnostic paper 'The Nantes Criteria' published in 2007. Yet, many people worldwide are still suffering unduly from this debilitating condition. Many are wrongly diagnosed and therefore remain in pain without hope of targeted treatment.

Please, think about this. Patients with bladder problems, urinary frequency, bowel dysfunction and genital pain, men with erectile dysfunction, penile pain and prostatitis, women with endometriosis, dyspareunia, interstitial cystitis, and fibromyalgia who have been unresponsive to treatments typical to these more universally diagnosed problems, may have Pudendal Neuropathy.

The pudendal nerve and its branches take a tortuous path through the pelvis and can be compromised at any point, just like any other peripheral nerve. However, many doctors are unaware that the condition exists, while other peripheral nerve entrapments, such as carpel and tarsal tunnel syndromes are eminently accepted pathologies.

Because of this medical neglect, PN patients find that it takes 1-15 years to get a correct diagnosis with an average of 4 years. This is of course, before any positive treatment can be prescribed and then undertaken.

These unfortunate circumstances result in compounding medical and social difficulties for the sufferer, including depression, hopelessness and an often huge personal financial burden, not to mention a severe drain on government budgets due to any subsequent benefit hand-outs.

Misdiagnosis can also lead to wasteful, expensive treatements, unnecessary surgeries, and prolonged nerve trauma. Worryingly, the longer any nerve is compromised, the less likely a good outcome.

One of the reasons Pudendal Neuralgia has been over looked is the lack of a medial specialty and its exclusion from medical school curriculum.

The pelvic area also has a conflicting overlap of medical specialties because of its anatomical location. For instance, a neurosurgeon would not usually examine gynaecologically, while a gynaecologist would not always happily treat nerve problems; so the PN patient falls neglected between many medical modalities and a correct diagnosis remains elusive.

Thankfully, some neurosurgeons, urologists, hip surgeons, gynaecologists, pain consultants and plastic surgeons have taken a personal interest in the problem in an attempt to alleviate their patients' suffering.

Currently, there is no standard of care for patients with Pudendal Neuralgia. Patients typically must become their own advocate and often travel exceptional distances to find a diagnosis and hopefully treatment, resulting in further financial constraints. Treatments however, can be as simple as pelvic physical therapy with a knowledgeable PN aware practitioner, although those resistant to conventional treatments may require decompression surgery.

The enigma is, as recently reported, PN can be easily diagnosed!

http://www.perineology.com/files/ics-glasgow-diagnosis.pdf

We, the undersigned, ask that more attention and research be given to pelvic nerve entrapments including the Pudendal Nerve which affects many vital sensory and motor functions of the pelvis. We especially request that Peripheral Nerve surgeons in America and worldwide sense the urgent problem that Pudendal Nerve entrapment entails, and develop appropriate and timely diagnostic testing and treatment. We implore all Medical Schools, and Medical Associations to communicate the problem of Pudendal Neuralgia to every student. It deserves their attention and yours.

We also ask that you try to bring as much general awareness to this condition as possible through medical conferences, meetings, speeches, and publications. Although Pudendal means shame, we are not ashamed to spread the word, and hope you will help us.

There are only a mere handful of surgeons in the world who are offering treatment and surgical decompression of the Pudendal Nerve and its branches. We thank them for the compassion they have shown and their research into PN which has been beyond their own (varied) specialties but has proven so necessary.

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.

On behalf of all PNE sufferers, we are eternally grateful for your help. Thank you so much.

Sponsor

shawnmellis@gmail.com, helen.howey@gmail.com

Links


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  • vivienne flint
    vivienne flint United Kingdom, Mansfield
    Feb 21, 2017
    Feb 21, 2017
    This kind of pain needs acknowledgement it makes peoples lives a misery.
  • Anonymous
    Anonymous
    Feb 18, 2017
    Feb 18, 2017
    Hi Shawn just watched your youtube video I really hope you are doing better. I have had PN/PNE for the last year and it's been the hardest thing I've ever had to do. I wouldn't wish this on my worst enemy, everyday having to be stronger than the last. I feel like I have no security or comfort in my life just pain. Thank you for creating this page, you have done a wonderful thing for our community of fellow human beings suffering from PNE.
  • Anonymous
    Anonymous
    Jan 29, 2017
    Jan 29, 2017
    PN is extremely painful and changes your life forever. More research is needed to find a cure.
  • Glenn Costenbader
    Glenn Costenbader United States, Whitehall
    Jan 26, 2017
    Jan 26, 2017
    My wife is currently suffering from this; surviving (barely) every few hours from percoset to percocet. Hasn't worked for months. See a doctor soon who is aware of PN.
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