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

  • sheila Jacques Having suffered 12 months of debilitating pain that has taken me from an active life as a carer, to suffering at home with pudendal nerve entrapment, now catheterised unable to pass urine myself and having difficulty with bowels. Totally unable to sit,I am now awaiting surgery in Bristol UK. I would really like to raise the awareness of this awful condition and cannot praise the team enough here who are offering support. I therefore lend my name to this petition and hope it helps others on this journey and difficult decision for the relatively new surgical approach.

  • Fiona MacGregor Dear Sheila, as you can see i have only just joined this forum and have been so wanting to find out how many others there are 'out there' who are in the same boat. You mentioned that there is a supportive 'team' in Bristol UK. Please can you tell me if you have been operated on or are awaiting an Op and what treatment for pain relief you have been given in the meantime. I had a Hysterectomy via the vagina (therefore it was pulled out of me) rather than cutting across above the pubic line and have suffered from terribly pain (all the usual; burning inside the vagina, unable to sit, electric shocks in the vagina, having to wait ages to pass urine, often the feeling of being kicked between the legs by a horse, sciatica as a secondary from the PNE. With anti-mflamatory tablets and the medication Rivotril the pain is under control, BUT i realise that after such a long time with the pain the next step is to be operated on... can you tell me if you are being operated on through your bottom to try and release the nerve? I would like to know what you have been told and advised with regard to the recovery period. I live in France and have eventually by going privately, been advised by the Dr who invented the Op which relieves the pain, by cutting through the bottom to find the nerve.... I would like some feedback as I am aware that there is only a 70% chance of total pain relief, 29% of not making it better and 1 % of sadly making it worse. i really would appreciate some feedback. Many thanks. Fiona.

  • Kathi Scribner I am having a hard time getting myself diagnosed because there are no doctors trained in this.
    Our Doctor's need training in Pudendal Nerve problems.

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    Kathi Scribner

    2 days ago Comments: I am having a hard time getting myself diagnosed because there are no doctors trained in this. Our Doctor's need training in Pudendal Nerve problems.
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    james shirley

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