Pudendal Pain to Purpose Foundation was created so that people living with pudendal neuralgia and neuropathy would have more than scattered information and a lonely search for answers.
We bring together education, peer connection, care-navigation resources, awareness and hope for people affected by a condition that is often difficult to explain and too easy to dismiss.
From Personal Devastation to a National Lifeline
Founder John M. Kilgore, II knows pudendal pain personally. In 2020 John Kilgore, was struck down by inexplicable, catastrophic pelvic pain, encompassing the entire pelvic region from rectal to perineum to genitals, and with the severest pain emanating primarily from bowel activity. The agony was so severe it triggered autonomic nervous system failures – leaving him bedbound, shaking violently from freezing chills under layers of blankets, and vomiting from horrendous rectal pain that peaked at a constant 9 out of 0 pain level. The systemic trauma frequently drove his blood pressure to stroke-level spikes (180/120). Through all of this trauma, John lost his ability to sit, drive and to do most functions of daily living, costing him his independence and almost his will to live.
For more than a year, John remained housebound and without hope as a long line of medical specialists searched for answers. He eventually became a patient of a Palliative Care clinic and for the first time finally received proper pain management. That, along with pelvic therapy, finally began to make life bearable. Eventually, he received a diagnosis: Pudendal Neuralgia with a hypertonic pelvic floor. When first-line standard treatments failed to bring relief, John discovered a specialized peripheral nerve surgeon. He flew 6,000 miles to Europe for decompression surgery, where the surgeon discovered his pudendal nerve was severely entrapped between calcified ligaments that had hardened like bone. It was an anatomical structural nightmare that felt like sitting on an open knife 24 hours a day.
A Growing Movement
Emerging from this battle, John realized the terrifying lack of quality information and clinical support available for this condition. Three years ago, he started a support group with another fellow sufferer to help others navigate the dark. What began with just two people quickly exploded into a community of over 3,000 members.
Tragically, the group soon experienced the loss of a member to suicide. Pudendal neuralgia does not just cause excruciating physical pain; it aggressively robs individuals of their intimacy, their relationships, their careers due to an inability to sit, and their physical independence. Recognizing that a peer support group alone could not save these highly fragile and vulnerable lives, John transitioned the group into a forceful advocacy engine: The Pudendal Pain to Purpose Foundation, a registered 501 (c) (3) non-profit.
Our mission is to improve the lives of people affected by pudendal neuralgia and neuropathy through reliable education, peer connection, public awareness, care-navigation resources, practical assistance and suicide-prevention support.
We envision a future in which pudendal pain is better understood, people reach informed care sooner and no one is left to face the condition without credible information, community or hope.
We provide treatment overviews, provider-search resources and practical questions people can use when evaluating possible next steps.
We support respectful peer connection for patients, caregivers and families while keeping personal experience separate from medical advice.
We organize source-backed health information in clear language and help people prepare for better conversations with qualified professionals.
Our foundation pledges to fund 100 therapists in advanced pelvic training. Why? A severe national shortage of pelvic therapists traps patients in long diagnostic delays. When full deployed, this single initiative will help fill the gap and can impact nearly half a million lives.
We help patients and advocates give pudendal pain a name, a visible symbol and a place in broader conversations about pelvic and chronic pain.
We connect people in emotional crisis with immediate professional support and promote messages centered on connection, survival and the possibility of a next step.
Dignity: Pelvic pain is real, and every person deserves to be heard without shame.
Accuracy: We distinguish source-backed education from personal experience and medical care.
Compassion: We meet pain with empathy, patience and respect.
Transparency: We are honest about what we know, what we are still building and how support is used.
Inclusion: Pudendal nerve pain can affect people of different sexes, genders, ages and backgrounds.
Hope: We do not promise easy answers; we help people find a reason and a path to keep moving.
Whether you are living with pudendal pain, supporting someone you love or looking for a meaningful way to help, there is a place for you in this mission.
Together, we can make reliable information easier to find, strengthen a community that understands and ensure fewer people face this condition alone.
