The Nine-Year Wait: What Endometriosis Diagnosis Delay Actually Costs

One in ten people assigned female at birth in the UK has endometriosis. The average time from first symptoms to diagnosis is still close to nine years. This episode doesn't just state those numbers, it shows what they feel like from the inside, and what they do to a person over time.

A Diagnosis That Came Too Late

Carla Cressey first experienced symptoms at 13. She saw a gynaecologist at 15, presenting with what should have been recognisable signs of endometriosis. She was dismissed. Repeatedly. For a decade.

Her diagnosis came at 25, during an emergency hospital admission that began with doctors removing her appendix, because the pain she was in, a pain she had been experiencing regularly for years, had been mistaken for appendicitis. When she didn't improve after the appendectomy, they investigated further. What they found was endometriosis that had progressed so far it had affected her bowel, bladder and all her reproductive organs.

"It's just a shame that it took for it to go that far, to be dismissed so much when you're in absolute agony and you know something's not right." ~ Carla Cressey

By 29, Carla had undergone a hysterectomy, bladder reconstruction and a period with a stoma. Two of her surgeries were open procedures. All of this, in a condition that had been visible and symptomatic since she was a teenager.

What Dismissal Does to the Nervous System

This episode sits at the intersection of endometriosis, chronic pelvic pain and mental health in a way that is rare and genuinely necessary. Sheren Gaulbert, pain and trauma therapist, explains what happens neurobiologically when a person is repeatedly told their experience isn't real, or is given treatment that doesn't fit.

Each dismissal adds to the threat response. More cortisol. More adrenaline. More pelvic floor tension. Reduced access to the serotonin, oxytocin and endorphins that could help. And over time, this cycle doesn't just make the pain harder to bear, it makes it harder to treat.

Carla describes attending a pain management group that included people with endometriosis, stomas and unexpected infertility diagnoses, sitting alongside someone with a broken arm, receiving generic pain education that told them their experience wasn't real.

"For some people, it was actually really triggering. It can be really damaging to feel dismissed when treatments are very generalised." ~ Carla Cressey

This still happens. It happened to Carla a few weeks before recording this episode, at a menopause clinic.

What Actually Helps

The Endometriosis Foundation was built, in large part, because Carla couldn't find what she needed when she was diagnosed. No information. No community. An A4 sheet of paper from the hospital and a referral.

What the Foundation now offers reflects everything that was missing from her own journey: individualised support, clinician-led community events, education, referral guidance. The principle running through all of it is the one Sheren names clearly in this episode: treat the individual, not the body part.

Endometriosis is unpredictable, variable, and deeply personal in how it presents and progresses. The nervous system and chronic pain are connected in ways that mean the emotional and psychological dimensions of the condition are not separate from its physical management, but central to it.

There is a great deal more in this episode about what that looks like in practice. Listen to the full conversation with Carla Cressey and Sheren Gaulbert to hear all about it.

Resources and research discussed here