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Pudendal Neuralgia Alliance
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SITE STILL UNDER CONSTRUCTION - Updated October 30, 2024
Science vs Belief
Research, Treaments, and Cures for Pudendal Neuralgia
Medical Researchers use double-blind studies in clinical research to develop medical treatments and find cures. Double-blind studies are considered the gold standard in clinical research because they provide an unbiased view of the safety and effectiveness of new treatments. They can help researchers avoid bias, increase the credibility of their research, and produce more accurate results.
In 2016 a group of eight expert doctors conducted a randomized, double-blind, controlled trial to test using corticosteroids (Kenalog) in addition to the anesthetic (long-lasting Bupivacaine) to the diagnostic pudendal nerve block for pudendal neuralgia.
Conclusion: Corticosteroids [also known as steroids] provide no additional therapeutic benefits compared with local anesthetic and should therefore no longer be used.
The Placebo Effect: When a person's physical or mental health improves after taking a placebo, or "dummy" treatment, that appears real but has no therapeutic benefit.
Regrettably, almost all U.S doctors still use steroids when they administer a diagnostic nesthetic pudendal nerve block defying the French trial published in Wiley, Wiley is one of the world's largest and most reputable publishers, covering a diverse range of subjects, including science, technology, medicine, social sciences, and humanities.
Why is this the case?
It could be profit.
Some U.S physicians take this denial of science even further. They do not offer a diagnostic PN block but instead only give give six diagnostic anesthetic PN blocks with a steroid once a week for six weeks in row. They charge cash only and require the full $6,000 payment in advance. The pudendal neuralgia medical community is not overseeing itself and this must stop now, If physicians will not hold each other accountable, someone or another entity must take over.
Would the Alzheimer's medical community accept doctors administering a treatment that science had proven as ineffective eight years ago?
The most monumental randomized, double-blind, controlled trial: In 1954 a double-blind randomized clinical trials lead to a medical miracle, perhaps the most significant prevention of a permanently disabling and deadly disease are those for polio.
By 1953, Dr. Jonas Salk and his team had shown their experimental vaccine worked – first on monkeys in their lab, then on children who already had polio at the D.T. Watson Home for Crippled Children, and then on a small group of healthy children in Pittsburgh. One of the largest fireld trials in medical history soon followed.
April 23, 1954: Some 650,000 children got the Salk polio vaccine or a placebo, and 1.2 million other kids received no injection but were monitored as an untreated control group.
In 1955, after a field trial involving 1.8 million Americans, the world’s first successful polio vaccine was declared “safe, effective, and potent.”
When asked who owned the patent to his vaccine, Jonas Salk famously replied that it belonged to the people and that patenting it would be like "patenting the sun." [Sauk did not patent the vaccine and gave it to the world]. President Dwight D. Eisenhower expressed his belief that every child should receive the polio vaccine. 1
If it were 1965 and your doctor told you not to get the polio vaccine nor give it to your children because they did not believe in vaccines, would you listen to that doctor or to science? Would you be offended if someone criticized your doctor or would you find another?
An example of objective observation vs. bias and belief.
Galileo Galilei was prosecuted by the Roman Catholic Inquisition in 1633 for holding true the doctrine of heliocentrism where the earth and the planets revolve around the sun. He had made the observations in 1610 through a strong telescope which he created. The Catholic Church of course believed in the geocentric view that the Earth was the center of the universe and that all heavenly bodies revolved around the Earth.
Galileo came to his conclusion based on observation, not belief based on what the Church or pope or any authority figure claimed as true. He was not attached to an outcome. Galileo looked for an objective, observable truth. The Church wanted to believe what supported their beliefs based on their beliefs which served their purposes, that humans were the center of the universe and that they were the only true power on earth. To question them meant torture and death.
In 1616 the Inquisition declared heliocentrism to be "formally heretical." In 1633 the Roman Inquisition found Galileo "vehemently suspect of heresy", and sentenced him to house arrest where he remained until his death in 1642.
Do you believe the sun revolves around the earth? Would that make it true?
The pudendal neuralgia community must following in the footsteps of Sauk, Galileo, and the doctors researching Alzheimer's, Parkinson's, cancer, Amyotrophic lateral sclerosis (ALS) aka Lou Gehrig's disease, Muscular Scoliosis (MS), etc.
Examples of doctors using double-blind randomized studies with a sense of urgency
to find treatments and cures for devastating and deadly diseases:
A Double-Blind, Randomized, Placebo-Controlled Trial of Bumetanide in Parkinson's Disease 2024 (thank you Michael J. Fox https://movementdisorders.onlinelibrary.wiley.com/doi/full/10.1002/mds.29726
A randomized, double-blind, placebo-controlled, parallel-group 12-week pilot phase II trial of SaiLuoTong (SLT) for cognitive f function in older adults with mild cognitive impairment
A randomized, double-blind, placebo-controlled, parallel-group 12-week pilot phase II trial of SaiLuoTong (SLT) for cognitive function in older adults with mild cognitive impairment (posted on the Alzheimer's Association site/what is posted on the Pudendal Neuralgia Association site?) https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1002/trc2.12420
Randomized, double-blind, placebo-controlled trial of rapamycin in amyotrophic lateral sclerosis (ALS) https://www.nature.com/articles/s41467-023-40734-8
A placebo‐controlled, double‐blind, randomized, two‐center, pilot trial of Cop 1 in chronic progressive multiple sclerosis https://www.neurology.org/doi/10.1212/WNL.41.4.533
Let's support U.S. physicians who accept and follow science and accept Medicare, Medcaid, and private health insurance.Healthcare for pudendal neuralgia should be a human right, not only for the fianciailist privilaged.
We hope to find at least 10 new doctors to train and perform depression surgery, implanting of peripheral nerve stimulators (PNS), and take new patients through all five of the Nantes Criteria, making sure to include the first, a physical exam which no doctors conduct in the U.S. (none that we have found yet) and the fifth, a positive anesthetic pudendal nerve block.
Do not let loyalty to a doctor or a false sense of safety and relationship with a doctor cloud the mind. Science is the only way to safe and effective treatments and a possible cure for pudendal neuralgia, not beliefs. Those of us with pudendal neuralgia or any other disease, especially one that is rare, must think critically and not blindly follow anyone or group.
Feel free to print this page, especially the Nantes Criteria and the 2016 Nantes trial which concluded that steroids are not an effective treatment for pudendal Neuralgia. In the end, you are your ultimate advocate. Protect and inform yourself with facts.
Adding corticosteroids to the pudendal nerve block for pudendal neuralgia: a randomized, double-blind, controlled trial
Published in Wiley 2016 (screen shot)
1 Adding corticosteroids to the pudendal nerve block for pudendal neuralgia: a randomised, double-blind, controlled trial https://pubmed.ncbi.nlm.nih.gov/27465823/ rticosteroids to the pudendal nerve block for pudendal neuralgia: a randomized, double-blind, controlled trial
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