Our Mission

Our Mission is to serve those with pudendal neuralgia,

through support, education, research, and advocacy to

increase awareness of the condition among doctors and the public.

Objectives:

Fundraise. All medical rare conditions are in great need of financial help to further their cause and help those suffering. Pudendal Neuralgia Alliance (PNA) is the first pudendal neuralgia (PN) nonprofit created to make this their nuber one goal. Anyone who volunteers for a medical nonprofit understands that money is essential to make real change through medical research and awareness. Other neuralgias with transparent financial reporting with annual revenues up to $1.4MM. We are just at the beginning, but we will grow our revenue one step at a time with the help of each one of us - Incredible Together!
Find physicians who accept insurance and know at least the basics about pudendal neuralgia and can take a patient through the Nantes Criteria (there are five) created by eight of the most knowledgeable and experienced PN doctors in France in 2007. Even this is currently impossible in the U.S. so most people with PN go years without a diagnosis, and therefore without treatment, missing work, going to doctor to doctor, telling them their agonal pain is in their minds. We have started a list and will continue to add names as quickly as we can find such physicians, but it is difficult because there are so few.
Create and increase awareness of pudendal neuralgia among doctors who would treat the condition and those who are outside the specialty. Pudendal neuralgia is considered a rare disease and therefore most physicians don't know about it and can easily misdiagnose a patient and perform unnecessary treatments and surgeries that could damage a patient's body. We will send hard copy and electronic mailings to doctors, hospitals, and medical schools.
Create a PNA Travel Fund for pudendal neuralgia patients to help organize and assist them with travel and lodging since most must travel out of state or country due to limited number of specialists in the U.S. and the rest of the world. We intend to recruit new doctors and improve the culture PN pain get the medical help they need now.
Encourage physicians to travel and train under experienced doctors to learn how to conduct the Nantes Criteria and learn about available treatments and resources. Also, encourage physicians to learn skills to treat pudendal neuralgia such as implanting a peripheral nerve stimulator (PNS). Currently the U.S. does not require doctors to train to administer this procedure so each PN patient is not the first, not a guinea pig.
Currently doctors only receive a manual and watch a presentation by the company. This great risk to the patient which should not be acceptable. The U.S. medical devices market size was estimated at USD 143.64 billion in 2022. The global market USD 570 billion.1 Regrettably the priority is to get devices in the hands of doctors and into the bodies of patients, properly trained or not. Here is a high=profile example of fraud and corruption in the medical device industry that involved the CEO of Stimwave, now defunct. 2
Send emails and mailings to doctors and hospitals to provide the diagnostic criteria for pudendal neuralgia listed in The Nantes Criteria to make sure they conduct each of them which most U.S. doctors currently do not:

A. Take a medical history
B. Conduct an internal (vagina and/or rectum) and external exam

of areas around the pudendal nerve & pelvis including hips,

piriformis muscles, and obturator internus.
C. Learn how to perform a diagnostic anesthetic transgluteal

pudendal nerve block using ultrasound (fluoroscopy is faster

but gives off significant radiation)

7. Create and Increase awareness of pudendal neuralgia in poor, rural areas through healthcare clinics, urgent cares, community centers, churches, mosques, synagogues, temples, gurdwara, where there may be no hospitals or doctors for hundreds of miles. This is also where we will use our travel fund resource if a local medical professional believes someone may be suffering from pudendal neuralgia. Many Americans do not have a car, money to cover time lost between low-wage, jobs, or money for childcare. Also, gender and racial bias are common in the pain management specialty. We hope to help change that.

8. Send requests to doctors to train with experienced doctors to learn how to correctly implant peripheral neurostimulators (PNS) medical device. Peripheral neuromodulation is one of the few options patients have to reduce and hopefully stop severe chronic pain of pudendal neuralgia after conservative treatments have failed.
Regrettably, The U.S. Food and Drug Administration (FDA) only requires a doctor to attend a lecture training to certify them to implant a PNS in any part of the body. There is currently no requirement in on living patients under the guidance of an experienced physician. This means that most pudendal neuralgia patients will be the first patient, the proverbial guinea pig, of a PNS by a doctor. We do not believe this is acceptable.

9. Find doctors and medical students who want to learn about the four PN decompression surgery approaches and train to specialize in one of there. There are only a handful of qualified doctors in the U.S. and many of them have moved to a cash only business model. They do not accept insurance.The cost for travel, lodging, and the surgery run above $40,00, beyond what 99% of patients can afford. We need more qualified doctors who believe every American has a right to this PN decompression surgery regardless of income because it is the only permanent solution to the condition after conservative treatments have failed. The doctors with the most experience are located in France and in a few cities in Europe. This is because France is where the condition was first diagnosed, studied, treatments, and two of the four decompression surgeries developed.

10. Encourage U.S. doctors to continue education and learning about pudendal neuralgia by reading scientific publications and attending PN Conferences in the U.S. and abroad, especially the annual European Convergences CPP (Convergences in Pelvic Perineal Pain).

11. Send emails and mailings to hospitals, doctors, their offices, and medical schools to make them aware of gender and race biases, conscious and unconscious, and how they lead to the unprofessional and poor treatment patients during office visits and subpar to no medical treatment for many patients. These biases are scientifically documented and published.

12. Hire a professional web designer to maximize effectiveness and user-friendliness of our website which has been created by a volunteer.

13. Create promotional items such as purple ribbon pin, t-shirts, mugs, pens, etc. to increase aware of pudendal neuralgia and keep the condition more front and center on doctors' and the public's minds.

Consistently update website list of experienced doctors who treat pudendal neuralgia and related medical problems, (e.g., pain management, urogynecologists, gynecologists, urologists, rectal surgeons, gastroenterologists and experienced and certified Pelvic Floor Physical Therapists (PFPT) who accept insurance. The average cost for a cash only PTPT starts at $175 and the highest price for a session we have found is $400. The PFPT defend their prices claiming they cannot profit otherwise. We suggest changing their business model or joining a hospital or medical system. We believe healthcare is a human right not a privilege for the wealthy, especially for a condition that causes severe, intractable, constant pain. There is often no oversight for these PFPT's. When I was at the beginning of my long, dark, journey, I paid a PFPT who charged $175 per session. She never touched me. She only talked to me. I cried because I knew something wasn't right, but I didn't know much about PN and trust that a PFPT on the Westside of LA (affluent area) had integrity. She was a fraud. This website is to inform and protect people who are recently diagnosed with PN from medical providers exploiting the desperation and naivete of new patients. There is no little information about PN avaiable in the U.S. through doctors or any other means. Again, we, the patients, spend years and decades seeking help. Let's reduce that by 90%.

Science and Ethics

PNA will only endorse scientifically proven medications,

treatments, procedures, and surgeries.

Regrettably, there are physicians and others performing fraudulent treatments.

Instead of throwing themselves into research and trials, as Dr. Dr. Jonas Salk did during the polio crisis,

some choose to exploit the desperation of those suffering the severe

chronic pain of pudendal neuralgia for months, years, or decades.

We plan to double=blind fund trials to expose that fact that these treatments do not work

and finally put an end to this abuse
We do not see it in other medical specialties

On April 12, 1955, Edward R. Murrow asked Jonas Salk who owned the patent to the polio vaccine.

“Well, the people, I would say,” Salk responded. “There is no patent. Could you patent the sun?”

1 https://finance.yahoo.com/news/medical-devices-market-size-estimated-151500895.html

2 Southern District of New York | Former CEO Of Medical Device Company Convicted Of Creating And Selling A Fake Component That Was Implanted Into Patients | United States Department of Justice

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Pudendal Neuralgia Alliance

contact@pudendalneuralgiaalliance.org

Paid for by volunteer until 501c3 status granted by IRS