What does it take to receive the right diagnosis after fifteen years - and what gets left behind in the waiting?
Carli Cutchin is a writer and disability advocate whose work on chronic pain and disability has appeared in Ms. Magazine. She has lived with pudendal neuralgia for fifteen years. In this episode, Carli traces her full journey: from a bike ride that changed things at a nerve-deep level, through pelvic floor physiotherapy, nerve blocks, and conservative treatments, to a devastating 2020 relapse, the diagnosis of pudendal nerve entrapment, and decompression surgery with Dr. Hibner. This is also a conversation about what medicine does to women's pain when it can't explain it - and how Carli turned that experience into writing and advocacy.
Fifteen years, one diagnosis: from pudendal neuralgia to nerve entrapment
Carli's pain began after a bike ride and stayed. What followed was the long journey that many people with pudendal neuralgia will recognise: years of treatment that helped partially but never fully, periods of relative stability followed by relapses, and the specific difficulty of living with a condition that most practitioners - even pelvic pain specialists - have limited experience treating. Conservative approaches including physiotherapy and nerve blocks were part of her care for years before a 2020 relapse left her largely bedridden.
The distinction between pudendal neuralgia and pudendal nerve entrapment is one of the most practically important things this episode covers. Entrapment - where the nerve is physically compressed - requires a different treatment pathway, including surgery, that most practitioners never reach in their assessment. Understanding why decompression surgery is indicated, what it involves, and what recovery actually looks like is information that is genuinely hard to find. Carli's experience with Dr. Hibner is a rare first-person account of the process.
"Pelvic pain is the black box of gynecology. I was like, is this woman saying I'm like a plane crash?"
Shame, medicine, and the word "pudendal"
The word pudendal comes from the Latin for shame. Carli is a comparative literature scholar, and she does not let that etymology pass without comment. The language medicine uses to describe women's bodies - and women's pain - carries weight, and the weight of that word is part of the experience of having the condition named after it. This section of the conversation moves between the clinical and the cultural in a way that is both intellectually sharp and personally grounded.
Carli also addresses something that comes up frequently in the treatment of chronic pelvic pain: the tendency to reframe unresolved physical conditions as psychological ones. She is clear that the trauma and somatic work she did was meaningful - and clear that it did not cause her pain. The distinction matters, and her critique of how medicine frames chronic pain in women is one of the most articulate versions of that argument you will hear.
"The pain had always felt like this judgment on my very being, like I'd been chosen in the worst way for some mysterious sin I didn't remember."
Getting a correct diagnosis - and what she wishes she'd known in year one
Reaching the pudendal nerve entrapment diagnosis took the kind of medical detective work that most patients are not resourced to do on their own. Carli talks about what finally made the difference: the specific clinical assessment that identified entrapment rather than neuralgia, why this distinction isn't made more routinely, and what the pathway to surgical referral looked like. She is direct about the delays, the near-misses, and the systemic gaps that extended her journey by years.
For people currently in a diagnostic process for pudendal neuralgia or pelvic pain that hasn't responded to standard physiotherapy and conservative treatment, this episode is a genuinely useful clinical resource as well as a personal account. Carli covers what to ask for, what to push back on, and what knowing the right terms can do for a medical appointment.
"I've had this pain. It's the only thing that makes sense."
From personal struggle to advocacy: writing about pain
Carli's move from patient to writer and advocate is not a story of having transcended the pain - she is careful about that. It is a story of finding a use for the experience of having been failed, and a way of turning that failure into something that might make the next person's journey shorter. Writing for Ms. Magazine, building an audience at carlicutchin.com, and speaking publicly about pudendal neuralgia and the medical treatment of women's chronic pain are all part of that.
For listeners who are looking for validation that the fifteen-year journey toward a correct diagnosis is not a personal failure - but a predictable consequence of a system that was not built to find these answers - this conversation offers something important. And for those who are writers or advocates navigating their own experience of chronic illness, Carli's account of how she found language for it is worth sitting with.
