89% of panel members with endometriosis were told their pain was 'normal' by at least one healthcare provider.
Endometriosis affects an estimated 190 million women worldwide. It causes tissue similar to the uterine lining to grow outside the uterus; creating inflammation, adhesions, and often severe pain. It is associated with infertility, bowel and bladder symptoms, chronic fatigue, and significant mental health impact. And it takes, on average, ten years to diagnose.
The Sibyl + Sage panel includes 1,240 women with a confirmed endometriosis diagnosis. Their collective diagnostic journey is one of the most distressing datasets we have gathered.
A decade of being dismissed
The average time from first symptom to diagnosis among our panel members was 9.4 years. During that time, the average woman had seen 4.7 healthcare providers about her symptoms. Sixty-two percent had been told at some point that their pain was psychological. Forty-four percent had been prescribed hormonal contraception without investigation of the underlying cause.
"I was told period pain was just part of being a woman. I believed it for fifteen years. I had stage four endometriosis. -Panel member, 37, Texas"
Why diagnosis takes so long
● Normalisation of pain: 71% of women with endometriosis initially accepted their pain as 'just bad periods.'
● Lack of non-invasive diagnostic tools: endometriosis cannot be reliably detected by ultrasound. Definitive diagnosis requires laparoscopic surgery; a significant barrier to timely investigation.
● Symptom overlap with IBS, interstitial cystitis, and ovarian cysts leads to misdiagnosis and delays.
● Training gaps: many general practitioners have limited endometriosis training. Specialist referral often only came after years of persistence.
● Dismissal of women's pain: the most consistent theme across our entire panel dataset.
What to do if you suspect endometriosis
● Track your symptoms in detail; pain severity, location, timing in your cycle, effect on daily function. Documented patterns are harder to dismiss.
● Know the full symptom picture: painful sex, pain with bowel movements, bladder symptoms, and infertility are all associated.
● Ask specifically for referral to a gynecologist with endometriosis expertise.
● Seek a second opinion if your pain is dismissed. You are not obligated to accept a 'normal' finding from a provider who has not adequately investigated.
This article draws on research from the Sibyl + Sage Women's Empowerment Panel; which is a community of over 24,000 women across 22 different countries; sharing their experiences in their own words. To learn more about how we can amplify the voice of women in your research, contact us at voices@sibyl-and-sage.com.