What is Pudendal Neuralgia?

Most doctors and members of the pubic have never heard of pudendal neuralgia. Pudendal neuralgia (PN) is a chronic, severe, disabling, and often intractable perineal pain resulting from inflammation, compression, or entrapment of the pudendal nerve. The perineal area or genital area in women is from the rectum to the clitoris and in men from the rectum to the penis.

The pain presents as burning, tearing, sharp shooting, pressure, and an internal foreign body sensation.

It has devastating effects on a patient’s quality of life with serious limitations to their usual activities of daily life, particularly if sitting is involved. This is a very common scenario in current society, where many people have sedentary jobs, and commutes are frequent and long. PN can also be associated. with depression and anxiety. PN makes it physically and emotionally to maintain family, friend, and intimate relationships and work. This leads to isolation and financial instability.

Pudendal neuralgia also makes people feel shame. Our culture is not comfortable

discussing or looking at genitals even with a medical provider. U.S. pain management

doctors do not conduct the required physical exam to diagnose the condition. European

doctors do. A vagina and penis should be considered human anatomy no different from

a shoulder or lung. If you hurt your wrist, an orthopedical surgeon will always examine your

wrist. They are not practicing medicine if they would see you and only talk to you about your

wrist pain. It would be considered unprofessional and absurd.

In the U.S. we do not even allow genitals and women's breasts on film or TV even with an R rating. Violence of every kind is acceptable. This is just another example of the U.S.' ignorance and shame around normal human anatomy related to sex which we feel adds to the obstruction among many other issues that prevent the urgent need for better and continual advancements in treatments and eventual cure of pudendal neuralgia.

Acute Pain usually comes on suddenly and lasts for a limited time. Some type of damage to tissue – such as bone, muscle, or organs. PN is not acute pain.

Chronic Pain is different. Your body keeps hurting weeks, months, or even years after the injury. Doctors often define chronic pain as any pain that lasts for 3 to 6 months or more. 1

Neuralgia (Greek neuron, "nerve" + algos, "pain") is pain in the distribution of a nerve or nerves,

Pudendal neuralgia is also known as Alcock’s syndrome and Pudendal Canal Syndrome. It is a long-term pelvic pain that originates from damage or irritation of the pudendal nerve. It is often misdiagnosed and inappropriately treated by many practitioners.

The condition originates from damage, injury, inflammation, or irritation of the nerve, especially for year of sitting, usually at a job, or chronic constipation, which courses through the pelvis from the rectum to the clitoris in women and the penis in men. The condition makes sitting, certain movements, using the bathroom, sex painful, and everyday activities almost impossible if not impossible.

Pudendal Neuralgia was first reported by French neurologist Dr. Gerard Amarenco in 1987 on a

series of patients with “syndrome du cyclist”, which occurs when a pudendal nerve is

compressed between the narrow bicycle seat and the medial surface of ischial tuberosity (sitz bone).

In 2008, A group of eight French pudendal neuralgia specialists in Nantes, France, Jean-Jacques Labat, Thibault Riant, Roger Robert, Gérard Amarenco, Jean-Pascal Lefaucheur, and Jérôme Rigaud, validated a set of simple diagnostic criteria which is considered the international gold standard known as The Nantes Criteria:

(1) Pain in the anatomical territory of the pudendal nerve

(2) Worsened by sitting

(3) The patient is not woken at night by the pain

(4) No objective sensory loss on clinical examination

(5) Positive anesthetic pudendal nerve block

Pudendal Neuralgia is more common in women than men: 70% vs 30%. The average age of PN's onset is 50-70 years but it can occur in young people. Pudendal Neuralgia is estimated to affect 30,000 to 200,000 Americans which means it falls under the definition of a rare condition. Most estimate the number is higher because of the ignorance about the condition and that many Americans cannot take time off work to see enough doctors to find one who has knowledge and experience in PN. Also, many Americans simply cannot afford to see a doctor due to having no health insurance or high deductible plants. None of these women are counted in the official national statistic.

Clinical research for rare conditions in U.S. is scarce because even if results are positive, there aren't enough people who will use the medications, surgery, or medical device to make the science profitable. For example, you'll see many clinical trials for nerve stimulators for the shoulder, knee, etc. but never one for pudendal neuralgia.

One of the worst consequences for sufferers is that Medicare, insurance companies, and state Medicaids in the U.S. do not cover any minimally invasive treatments, to neurostimulators, or the last resort, decompression surgery of the pudendal nerve. Most women and men with pudendal neuralgia are left live a life with severe chronic pain along the pudendal nerve.1

1 What Is Chronic Pain Management? Symptoms and Reasons to Control Chronic Pain (webmd.com)

_____

Pudendal Neuralgia Alliance

contact@pudendalneuralgiaalliance.org

Paid for by volunteer until 501c3 status granted by IRS

Incredible Together!

Most of us are separated by miles, by states, and even oceans. There may only be a few people and one or even no doctors who treat the condition in a city or area. . Patients, family, friends, community organizers, the public, and also doctors, pelvic floor physical therapists, and other specialists and researchers, must come together to significantly improve treatments and possibly cure this mentally and physical debilitating disease. The status quo is not acceptable.

Clinical trials and double-blind medical studies!

U.S. health insurance companies will only cover treatments, surgeries, and medications that have been put through FDA approved trials and research. We must think outside the box since Pudendal Neuralgia is rare to make this happen. We may have to fly participants to a doctor and/or hospital to bring together a statistically significant number. We have no more time to wait. People and their loved ones are suffering.

Shame impeding help.

The world 'Pudendal' comes from Latin pudenda, meaning “external genitals”, derived from pudendum, meaning "parts to be ashamed of". The pudendal nerve runs along the female and male genitals from the rectum to the clitoris/penis. Most doctors in the U.S. who treat pudendal neuralgia never examine patients yet it is one of the give Nanes Critera. People clerarly have difficulty thinking of genitals as a part of human anatomy the same as they would think of the heart, hand, or, kidneys. This issue needs to be addressed now. Pudendal neuralgia has been practically ignored in the U.S. since it was diagnosed in France over three decades ago in 1987.