This BBC news article highlights the problem of delayed diagnosis of endometriosis in the UK and includes several short vignettes. Extracts below from the first case and a comment from me. Full text: https://www.bbc.co.uk/news/articles/c79yyzw9v8xo
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Carla Cressy worked as a model from the age of five until she was 17, but kept collapsing on shoots...
From the age of 13, when she started her periods, she was plagued by excruciating pain but she was only finally diagnosed with endometriosis when she was 25.
By then, doctors had removed her appendix, mistakenly thinking she had acute appendicitis.
"I was hospitalised for chronic constipation several times. I wasn't able to eat, I was vomiting and in such severe pain but I kept being told it was a stomach bug."...
Because her endometriosis had been left untreated for so long, it had formed into frozen pelvis disease where "everything was stuck together".
It destroyed Carla's reproductive organs and was so extensive she was left needing bladder reconstruction surgery and a total hysterectomy...
"It still shocks me that this condition is so common," she says. "When I was diagnosed 10 years ago, I was told I was too young and that it was rare. We now know that it is absolutely not rare.
"A lot of people still believe endometriosis is just a period condition. It's so much more than that. We're talking about lung collapse, kidney loss, extensive surgeries, infertility and careers being cut short."
..."There is a serious problem within healthcare around medical misogyny and unconscious bias..."
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COMMENT (NPW): Endometriosis is indeed common but it is rare to see the complications described above, and this article is likely to cause undue alarm to young women. Endometriosis can be challenging to diagnose, partly because of symptom overlap with other conditions. A recent UK study found that 'Endometriosis takes an average of 6.6 years to be diagnosed worldwide, with delays of up to 27 years reported in the UK' https://www.york.ac.uk/news-and-events/news/2024/research/diagnosis-endo...
The way forward: severe menstrual pain should never be considered normal; early symptoms in adolescents and young women deserve careful assessment. Women and primary health workers need clear guidance. Primary care clinicians need straightforward routes to pelvic pain specialists.
A link to a support organisation such as the Endometriosis Foundation would be helpful: 'We believe everyone should have access to accurate, transparent, and trusted information, especially when it comes to making decisions about their bodies.' https://www.theendometriosisfoundation.org/
HIFA is ready to host a 1-week Spotlight on endometriosis (or any other health issue). To read more about Spotlights and opportunities for sponsorship see: www.hifa.org/spotlights
Best wishes, Neil
HIFA profile: Neil Pakenham-Walsh is coordinator of HIFA (Healthcare Information For All), a global health community that brings all stakeholders together around the shared goal of universal access to reliable healthcare information. HIFA has 20,000 members in 180 countries, interacting in four languages and representing all parts of the global evidence ecosystem. HIFA is administered by Global Healthcare Information Network, a UK-based nonprofit in official relations with the World Health Organization. Email: neil@hifa.org