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Endometriosis: 17 Years for Diagnosis, Lifelong Pain
18 Jul
Summary
- Actress endured 17 years before an endometriosis diagnosis.
- Severe pain and heavy periods led to permanent disability.
- New play explores medical gaslighting and self-advocacy.
Daneka Etchells faced excruciatingly heavy periods and pain starting at age 12, but experienced 17 years of delayed diagnosis for endometriosis. Initially dismissed, her condition worsened, leading to permanent nerve damage and physical disability, a situation she describes as medical gaslighting.
Her arduous journey, marked by being ignored by GPs, is reflected in a new stage production of 'The Secret Garden.' This disabled-led adaptation focuses on characters learning to self-advocate, a stark contrast to the original story’s miraculous cure for Colin.
Playwright Tom Wentworth, who is also disabled, reimagined the ending to portray a more realistic experience for those with chronic conditions. Wentworth, who has faced similar dismissals from doctors attributing his symptoms to his cerebral palsy, emphasizes the importance of trusting disabled individuals' knowledge of their own bodies.
Organizations like Healthwatch England acknowledge that conditions such as ADHD and endometriosis are frequently misdiagnosed or dismissed, particularly affecting young people, women, and the LGBTQ+ community. Reforms are called for to improve the NHS complaints system, and new initiatives like Martha's Law aim for faster reviews of deteriorating conditions.
