The Invisible Public Health Crisis: Confronting Women’s Chronic Pelvic Pain and theSilence That Surrounds It By: Dr. Whitney Perkins Witt

It began on what should have been the happiest day of my life. The birth of my child had left me flooded with emotions — love, exhaustion, and gratitude. But as the hours passed, an unfamiliar sensation crept in, sharp and unyielding, as if something deep within me had broken. I assumed it was part of the recovery, a temporary symptom of an otherwise incredible moment. What I did not realize was that I was about to be in the depths of an excruciating chronic condition — one that would shatter my understanding of pain, test the limits of my resilience, and ignite an unrelenting drive for advocacy.

Pudendal Neuralgia

The diagnosis came over five years later: pudendal neuralgia, a condition both poorly understood and frequently underdiagnosed. For those unfamiliar, it exists at the margins of medical knowledge — chronic nerve pain that radiates through the pelvic region, as invisible to doctors as it is excruciating for patients.

The pudendal nerve carries pain sensations to areas like the genitals, anus, perineum, and pelvic floor. When injured or compressed, it can cause severe burning or stabbing pain that can make sitting, walking, or even basic daily activities unbearable. It is a pain that silences, isolates, and redefines the key aspects of one’s life.

The Silence That Surrounds Chronic Pelvic Pain

Yet, for years, that silence was the loudest part of my experience. The worst part of chronic pain isn’t always the physical sensation. It is the invisible nature of it — the dismissals, the misdiagnoses, and the subtle accusation that it’s all in your head. My path through the healthcare system was a labyrinth of disbelief. One doctor reassured me it was a postpartum anomaly. Another muttered something about stress. Few seemed willing to investigate further.

Over the years, I was diagnosed with a variety of other conditions — none of which fully explained my symptoms. Each diagnosis came with new treatments and new hope, but none provided lasting relief. The failed treatments left me not only in pain but also feeling increasingly isolated and invalidated. But I could not ignore it. Pain has a way of eroding patience, of making every moment an act of survival. It wasn’t just in my head; it was in every fiber of my being.

Self-Diagnosis: A Path to Clarity

I turned to research, drawing on my academic training as a PhD in public health. The countless hours I spent analyzing evidence-based studies became both my refuge and my most powerful tool. I read everything I could to find out about pelvic pain, from scholarly journals to the shared testimonies of anonymous women on online forums. Piece by piece, I put the puzzle together, and ultimately, I diagnosed myself with pudendal neuralgia. Each discovery brought clarity and, with it, a profound anger: why had no one mentioned this before?

A Systemic Blind Spot

Pudendal neuralgia, it turns out, is not as rare as many might think. It is part of a broader group of chronic pelvic pain conditions that are both common and profoundly overlooked. While pudendal neuralgia affects both men and women, it is significantly more prevalent in women. Studies estimate that millions of women endure chronic pelvic pain, yet more than half never receive an accurate diagnosis. This life-altering pain is often minimized in exam rooms, dismissed with a casual shrug or a prescription for painkillers.

There is a deeper problem here. Conditions like pudendal neuralgia live in the shadows of medical awareness, their research underfunded, and their treatment options inadequate. In many cases, insurance companies refuse to cover treatments like Botox injections that offer real relief. For women battling these conditions, the system often feels stacked against them.

Fighting for Relief

I won’t sugarcoat it: there was no miracle cure. My journey toward relief was slow and often maddening. But over time, I discovered tools that gave me back pieces of my life. Multidisciplinary care, including physical therapy, provided moments of relief, while Botox injections helped alleviate the muscle spasms that had tormented me.

What these treatments didn’t do, however, was eliminate the systemic hurdles. At one point, an insurance denial for Botox left me staring at a bill I could barely comprehend. The message was clear: my pain wasn’t deemed “medically necessary” enough for coverage. This wasn’t just personal — it was emblematic of a system that devalues women’s health, especially when it comes to conditions that aren’t easily seen or understood.

Still, I continued to persist in my life. I carried this condition into every meeting, every presentation, and every professional milestone. The pain, while invisible to others, was a constant presence in my life. It shaped my resilience, sharpened my focus, and deepened my commitment to advocacy. I refused to let pudendal neuralgia define my life, even as it influenced the way I moved through the world.

Raising Voices, Breaking the Silence

Pain can be isolating, but it can also be galvanizing. Over the years, I connected with others navigating the same winding road. Their stories mirrored mine — stories of frustration, confusion, and resilience. Together, we formed a patchwork community, sharing advice, resources, and above all, the understanding that we are not alone.

This shared experience became the foundation for something larger. I realized that if awareness had the power to change my trajectory, it could change others. Pudendal neuralgia and the individuals it impacts need a seat at the table — not just in exam rooms but also in research labs, policy debates, and insurance boardrooms.

A Great Teacher

Living with pudendal neuralgia has been one of the most difficult challenges of my life, but it has also been an extraordinary teacher. The condition forced me to slow down, to reflect, and to reevaluate my priorities. It revealed to me what truly matters in life.

I learned the value of presence — of being there for myself and my loved ones, even in moments of pain. The time I once spent striving for perfection has been redirected toward gratitude for simple joys: quiet moments with my children, a conversation with a friend, or even just the feeling of a day with reduced discomfort.

This condition has also deepened my empathy and connection with others. It has shown me the resilience of the human spirit, both within myself and in the countless others navigating their own silent battles. While I would never wish this pain on anyone, I am profoundly grateful for the clarity it has brought to my life. It taught me that success is not about constant achievement but about living authentically, embracing vulnerability, and finding purpose even in the face of adversity.

Pudendal neuralgia taught me to prioritize what’s important: health, love, advocacy, and hope. This perspective fuels my fight — not just for myself, but for everyone who deserves to live a life free from the isolation and misunderstanding of chronic pelvic pain.

Where I am Now

Though I have made significant progress in managing my condition, I am not in remission. The pain, while reduced, remains a part of my daily life. I continue to rely on ongoing treatments, including physical therapy and periodic Botox injections, to keep the pain at a more tolerable level. Long-term follow-up remains critical to managing my condition, ensuring that treatments are adjusted as needed and that any new challenges are addressed quickly.

I have found sparks of hope in doing things that I once could not, transforming my life. I can kayak again, gliding along the water, feeling the wind rush past as if to say, “Welcome back.” I often dance in my kitchen to music I love, losing track of time as I twirl without a care in the world. I have even been able to ride a horse again, experiencing freedom, strength, and pure joy. These moments remind me that life, in its simplest pleasures, is still full of beauty and wonder.

These aren’t just activities — they’re a reclaiming of my life. What might seem like small feats to others are, for me, monumental triumphs, each one a celebration of resilience and hope. Along the way, I’ve learned something I hadn’t fully understood before: I am not merely surviving. I am a warrior, with an army of people behind me.

This journey has taught me to navigate uncertainty, to find strength in vulnerability, and to reclaim my voice from the silence that once surrounded me. I have discovered my resilience, my determination, and, perhaps most importantly, my capacity for joy. I’ve reclaimed my life, one small victory at a time — and I will never take that for granted.

Conclusion

For too long, chronic pelvic pain like pudendal neuralgia has been dismissed, leaving millions of women to suffer in silence. But silence is not invincible. Every voice raised, every story shared, breaks the stigma, and pushes for the change we desperately need. To every woman battling unseen pain: you are not alone. Your experience is real, your resilience is extraordinary, and your voice is powerful. Together, we can shatter the silence, demand better care, and build a future where women’s health is valued and prioritized. This is our fight, and we will not stop until every woman is seen, heard, and healed.

A Call to Action

We urgently need a patient-centered, multidisciplinary approach to address chronic pelvic pain, especially pudendal neuralgia. Awareness must be raised among individuals, families, healthcare providers, healthcare organizations, and policymakers to ensure timely diagnosis and effective care. Comprehensive provider training is critical, alongside policy reforms, to guarantee insurance coverage for essential treatments like physical therapy and Botox. Systemic changes must prioritize routine screening, accurate diagnosis, and sustained support, especially for women. Chronic pelvic pain cannot be ignored — it’s time to ensure every patient is seen, heard, and supported.

You can make a difference by supporting these and many other organizations:

• The Echenberg Institute for Pelvic & Sexual Pain: A specialized center dedicated to the diagnosis, treatment, and management of chronic pelvic and sexual pain conditions.
• Pudendal Neuralgia Association: A group dedicated to educating, supporting, and advocating for individuals with pudendal neuralgia.
• National Vulvodynia Association (NVA): A non-profit organization focused on chronic vulvar pain disorders, including pudendal neuralgia.
• International Pelvic Pain Society (IPPS): Promoting education and research on chronic pelvic pain conditions to improve patient care.
• American Chronic Pain Association (ACPA): Offering resources and support for individuals living with chronic pain.
• Health Organization for Pudendal Education (HOPE): Focused on raising awareness, providing education, and increasing access to resources for those living with pudendal neuralgia while empowering healthcare providers to improve diagnosis and care.

Your support can contribute to vital research, outreach, and educational programs that improve the lives of those affected by pudendal neuralgia and related conditions. Together, we can break the silence, raise awareness, and ensure no one has to endure this pain alone.

About the Author:

Whitney Perkins Witt, PhD, MPH, is the President and CEO of The Health Equity Consulting (HEC) Group. She is an internationally recognized leader in maternal and child health, health equity, and health innovation and technology. With 30 years of experience, she has held senior roles in prestigious non-profits, consulting firms, healthcare organizations, academic institutions, and the federal government.

Dr. Witt harnesses innovation and data to address women’s health and the social determinants of health (SDOH), improve community well-being, and promote health equity. Throughout her career, she has made a significant impact through rigorous research, evaluation, and technical assistance, supporting public, private, academic, and non-profit organizations to improve maternal and child health. She continues to strengthen her organization’s brand through influential publications and active leadership in professional societies.

Recognized for her contributions, Dr. Witt was honored as one of the 2024 Top 100 Innovators and Entrepreneurs by The Official Top 100 Magazine. This prestigious award recognizes visionary leaders who drive meaningful change and transform their industries through innovative thinking and entrepreneurial excellence.

She earned her Doctorate and Master’s degrees in Health Policy and Management and Public Health at the Johns Hopkins Bloomberg School of Public Health and a post-doctoral research fellowship in Pediatric Health Services Research at the Harvard Medical School. She earned her Bachelor’s degree in Law and Women’s Studies at Hampshire College. She is a certified practitioner in IBM Cognitive Services.