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Pudendal Neuralgia Alliance was started by members of Pudendal Neuralgia Facebook Groups.

In the face of impossible struggles to find medical care for pudendal neuralgia, a group of us have organized

and created this website and a new 501c3 nonprofit to advocate for ourselves and create real change,

and significant improvements in the quality of pudendal neuralgia healthcare, its affordability for the everyday

person, and to increase awareness which is rare among doctors and the public.

CRISIS HELP:

If you are in crisis, please call 988 the Crisis & Suicide Lifeline.

Someone will answer right away. The Lifeline provides 24/7, free and confidential support for

people in distress. I've used it, especially at night alone in unbearable pain. Use this resource.

Note: We are working to translate site into several languages but must raise funds first.

CRISIS HELP:

If you are in crisis or if you know someone in crisis, please call 988 the Crisis & Suicide Lifeline.

Someone will answer right away. The 988 Lifeline provides 24/7, free and confidential support for

people in distress. I've used it, especially at night alone in pain. Use this resource

We are listing this at the top of our main page because the three neuralgias: Trigeminal (TN),

Occipital, (ON), and Pudendal (PN), All are rare neurological conditions that cause extreme, debilitating pain.

The severe pain makes everyday living unbearable causing both physical and mental anguish

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Pudendal Neuralgia Alliance is unique in that we are going to actively fund-raise to achieve our primary mission and list of objectives to significantly help those suffering from pudendal neuralgia. PNA is an all-volunteer

non-profit and will maintain financial integrity and transparency through an annual financial report.

This website is also intended to centralize information about symptoms and treatments of pudendal neuralgia to

help women and men feeling pelvic floor and/or genital pain expedite their research and find help. It currently

takes an average of 4 years to be diagnosed with the condition.

People can lose their jobs taking off too much time for doctor appointments, which can lead to loss of a home a or car, which is especially devastating if someone is caring for children, a mentally or physically disabled family member, or elderly parent(s) who can no longer walk or suffers from Alzheimer's.

During the average 4 to five years of seeing doctor after doctor within different specialists who are unaware

of PN, there is a high occurrence of these physicians not treating these patients with respect or compassion,

telling them that their severe chronic pain is not real and in their minds. After years of hearing this, people will

believe these falsehoods, and with no hope, catastrophe can result.

In terms of physical risk, most women and men are misdiagnosed during these years, receiving no treatments,

or worse, receiving incorrect treatments and even unnecessary surgeries that could lead to injury of the pudendal nerve making the pain worse, possibly permanently, and/or causing physical harm to other parts of body.

The current situation within the medical system for those with pudendal neuralgia requires immediate attention.

VALUES

No one with pudendal neuralgia pain,

diagnosed or undiagnosed, should ever feel

ignored, ashamed, or mistreated.

The Pudendal Neuralgia Alliance is a coming

together of those with pudendal neuralgia,

their families, and friends, where empathy,

compassion, and support is available to all.

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Pudendal Neuralgia Alliance

contact@pudendalneuralgiaalliance.org

Paid for by volunteer until 501c3 status granted by IRS