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

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


Discussion

  • Lisa Murphree I have PNE although I have never been officially diagnosed with it. I cannot seem to find a doctor who knows anything about this. Please help me and others who suffer from this. The pain is excruciating.

  • Juliette Aiyana Took 5 years of doctors visits until I was correctly diagnosed.

  • Mark Im a male suffering from PNE going on 3 years. It took lots of appts, multiple doctors, and finally got correctly diagnosed 7 months ago. This condition has impacted my life in so many ways. I continue to hope for awareness and a cure. It is amazing how many people have this and for some reason the docs always default to Epididymitis or Prostatitis. Once that doesn't work they will tell you it is in your head and to stop thinking about it. I would love to kick the male doc down there and then just say don't think about it. That is how my pain goes everyday as if I were kicked down there and heavy dull ache.

    Hoping our awareness gets more attention.

    Thanks.

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