Sign Petition

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

1,002 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


  • John darrow
    John darrow United States, San Jose
    Sep 03, 2015
    Sep 03, 2015
    Wow!4 yrs have been suffering with feels like a tooth ace in left side of pelvis 24/7 7days a week hard on hurts like hell !ejaculating puts me through the roof with pain sitting pain in association standing seems to be only conform 20 yrs so tired of dr.s looking at me like I have 3 eye balls at the end of my rope how can I convince my dr. It's entrapment p.n. how can I get help on disability now medicare medicade.is their hope before I die 61 now.
  • Brandi Legg
    Brandi Legg United States, Beckley
    Aug 24, 2015
    Aug 24, 2015
    I'm signing for my friend. Hope they find a way to help with this. :)
  • Lindsay Mullins
    Lindsay Mullins United States, Douglasville
    Aug 24, 2015
    Aug 24, 2015
    As a sufferer of chronic pelvic pain since a hysterectomy one year ago, I beg you to take notice of this issue. It has drastically affected my life, and also my family's. I want my life back, and I want to make sure that no one suffers like this in the future.
  • Jennifer Bernier Barbera
    Jennifer Bernier Barbera United States, North Attleboro
    Aug 22, 2015
    Aug 22, 2015
    I have this. I was diagnosed 5 months ago. I am 38 years old. I had to quit my job this disease has turned my life upside down. I can not plan for the future because I do not know how I am going to feel from day to day.
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