Petition For More Research, Awareness, Training For Med School Students & Doctors For Chronic Pelvic Pain Frequently Caused By Pudendal Neuralgia/PNE
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.
Updates
August 22, 2015
We are approaching one thousand signatures fast. Help us break that wall today.
Reached 100 supporters
June 22, 2012
94 Comments
For 14 years I went to tons doctors for Rectal pain. Not one of them told me about Pudendal pain. I couldn't help myself because I didn't know why I was in excruciating pain. Doctors need to learn about Pudendal pain, so people like me don't go untreated.
Thank you for all your help. My husband has struggled with this for years and can no longer sit! Even Mayo clinic said they had no one who specialized in this area.
My best friend is suicidal because of a pudendal nerve injury she sustained after an operation..She has so many meds and treatment and nothing has helped she is virtually bed ridden..more need to be done and it makes me so angry that she has no relief from her suffering!
Time and money down the drain in health care because no doctor diagnosed me correctly. Peripheral nerves are important for the medical community to study, diagnose and treat.
No one in the NHS seems to have a clue about this. It's awful enough to be putting up with the symptoms of PN without feeling like every medical professional looks at you as if you are nuts. It's not even that complicated.
Keep up hope and the good work!!
Thank you Shawn for creating this petition. I have suffered with pudendal nerve pain for years with very little help. You are correct, it is so difficult to find medical help. I've been misdiagnosed, had unnecessary surgeries, cannot find help in the state where I now live, have incurred medical debt, and have known dark thoughts and despair that never existed until my PN pain came on like a tsunami. We need help! We need more help! And the medical community needs to come together to advocate for effective treatments like Botox and Pulsed Radiofrequency to be covered by insurance companies. Our brothers and sisters in Canada, Europe, and Australia have a human right to healthcare. That is not the case in the U.S.
Sign Petition
We never post to your account. Social sign-in is used only to verify your signature.
Add a comment?
Your signature will be added via . Tell others why you're signing — it's optional.
By signing, you accept iPetitions Terms of Service and Privacy Policy.
Share Petition
Don't stop at signing, share the petition link with friends to multiply our impact
Copy link or share directly
Petition For More Research, Awareness, Training For Med School Students & Doctors For Chronic Pelvic Pain Frequently Caused By Pudendal Neuralgia/PNE
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.
Updates
August 22, 2015
We are approaching one thousand signatures fast. Help us break that wall today.
Reached 100 supporters
June 22, 2012
94 Comments
Most doctors have never heard of it, please educate them! So many sufferers undiagnosed or misdiagnosed and told to 'live with the pain'. In this day and age should we live a life of disability when they are treatment options available, our doctors just don't know of them?
For 14 years I went to tons doctors for Rectal pain. Not one of them told me about Pudendal pain. I couldn't help myself because I didn't know why I was in excruciating pain. Doctors need to learn about Pudendal pain, so people like me don't go untreated.
Thank you for all your help. My husband has struggled with this for years and can no longer sit! Even Mayo clinic said they had no one who specialized in this area.
My best friend is suicidal because of a pudendal nerve injury she sustained after an operation..She has so many meds and treatment and nothing has helped she is virtually bed ridden..more need to be done and it makes me so angry that she has no relief from her suffering!
Time and money down the drain in health care because no doctor diagnosed me correctly. Peripheral nerves are important for the medical community to study, diagnose and treat.
No one in the NHS seems to have a clue about this. It's awful enough to be putting up with the symptoms of PN without feeling like every medical professional looks at you as if you are nuts. It's not even that complicated.
Keep up hope and the good work!!
Thank you Shawn for creating this petition. I have suffered with pudendal nerve pain for years with very little help. You are correct, it is so difficult to find medical help. I've been misdiagnosed, had unnecessary surgeries, cannot find help in the state where I now live, have incurred medical debt, and have known dark thoughts and despair that never existed until my PN pain came on like a tsunami. We need help! We need more help! And the medical community needs to come together to advocate for effective treatments like Botox and Pulsed Radiofrequency to be covered by insurance companies. Our brothers and sisters in Canada, Europe, and Australia have a human right to healthcare. That is not the case in the U.S.
Help this petition grow
Share it with friends to help reach 1,000 signatures.
Sign Petition
We never post to your account. Social sign-in is used only to verify your signature.
Add a comment?
Your signature will be added via .
Tell others why you're signing — it's optional.
Signing with Google or Facebook verifies your signature instantly — no email needed.
By signing, you accept iPetitions Terms of Service and Privacy Policy.
Share Petition
Don't stop at signing, share the petition link with friends to multiply our impact
Petitions like this
Other petitions you might want to support
Scan to share
Anyone who scans this can sign the petition.
Most doctors have never heard of it, please educate them! So many sufferers undiagnosed or misdiagnosed and told to 'live with the pain'. In this day and age should we live a life of disability when they are treatment options available, our doctors just don't know of them?