What does it mean to do everything right for fifteen years — and still not get to the bottom of your pain?

In this episode, I speak with Carli Cutchin, a writer and disability advocate with a background as a comparative literature scholar. Carli has lived with pudendal neuralgia for fifteen years and writes about chronic pain and disability for publications including Ms. Magazine. She is one of the sharpest thinkers I’ve come across on this topic, and this conversation goes well beyond the personal story.

We go into Carli’s full fifteen-year journey — from the initial onset of pain, through years of PT, nerve blocks, and conservative treatments that provided only partial relief, to a devastating relapse in 2020 that left her mostly bedridden. We cover the eventual diagnosis of pudendal nerve entrapment, what that actually means and how it differs from pudendal neuralgia, and the decompression surgery with Dr. Hibner that she wishes she’d known about much earlier.

We also dig into the ideas underneath all of it — how medicine frames chronic pain, the language it uses for these conditions, and what Carli sees as the specific cost of those frameworks for women. Her constructivist perspective on this is something I found myself thinking about long after we finished recording.

Whether you’re navigating pudendal neuralgia yourself, wondering whether entrapment might be relevant to your situation, or just someone who likes to think carefully about the bigger picture — I think you’ll take a lot away from this one.

In this episode:

• How Carli’s pain started and why it took so long to get the right diagnosis
• The difference between pudendal neuralgia and pudendal nerve entrapment
• What decompression surgery involves and what recovery looks like
• The trauma and somatic work Carli did — and why she’s clear it didn’t cause her pain
• Her critique of how medicine talks about chronic pain in women
• What she wishes she’d been told in year one

• The word “pudendal” — and what it means that it comes from the Latin for shame

Connect with Carli Cutchin:

• Instagram: @carlicutchin
• Website: carlicutchin.com

Connect with Mathilde:

• Instagram: @theworldstightestcommunity

• Website: www.theworldstightestcommunity.com