Challenges and Bias

There are numerous reasons women and men go years largely untreated for years and even decades and without a diagnosis and proper care pudendal neuralgia (PN).

We want to help solve them.

We need to research and advocate for ourselves and work with and help conjure the will and ethics in doctors to start and expedite clinical trials and double-blind studies for all treatments now. We, those suffering the constant pain due to PN, have not seen any medical improvements or innovations the last 10 years.

There are almost no doctors in the U.S. who treat the condition and the handful of them continue to change to cash-only practices making them unavailable to almost all Americans.

Most women and men with pudendal neuralgia needlessly suffer agonal chronic pain and the loss of family relationships, friends, jobs, financial stability, mental health, and any normal quality of life. It is unacceptable.

Main challenges to making medical diagnosis and treatment available and covered by insurance:

It's a Rare Condition. Most doctors, hospitals, and sadly even universities do not want to invest learning and training to treatment a disease that affects 200,000 Americans. We are the only First World democracy without universal healthcare, so if something is not profitable, the people are not important.
Bias against women within the U.S. pain management medical specialty
Bias against people of color within the U.S. pain management
Bias against overweight people - it's all doctors see, not a possible serious illness
Too few women pain management specialists (18%) where the PN sufferers are 70% women due to lower pay than men and the culture in the field.

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Pudendal Neuralgia Alliance

contact@pudendalneuralgiaalliance.org

Paid for by Ms. Berdes until 501c3 established

Challanges around Pudendal Neuralgia

There are several reasons why pudendal neuralgia has gone

largely untreated in the U.S. We want to help solve them.

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.