Key Summary
- 3,500 people want a national endometriosis registry
- Poor NHS records hinder proper care
- Government pledges better treatment and access
Endometriosis is a serious health issue that affects one in ten women and people assigned female at birth in the UK.
However, the poor recording of endometriosis cases by the NHS has severely impacted the quality of UK’s endometriosis care.
About 3,500 people have signed a petition for a national registry for the condition.
The petition has been initiated by Jessica Smith, an endometriosis patient who had undergone three surgeries in her mid-twenties.
The database would collect and track data about the condition to help improve diagnosis, treatment, and overall care.
Endometriosis UK has called out the NHS for its inaccurate recording of the number of sufferers and the success rate of various types of treatments.
The cases diagnosed during a surgery are found to be not recorded by the doctors.
This can seriously alter the official figures.
Being a painful health condition that can take an average of nine years to be diagnosed, campaigners believe a registry is an effective tool to tackle the issue.
They said it can avoid the ‘trial and error’ method of treatment with proper management.
"It feels like we're guinea pigs, there's very much just a 'try it and wait and see' approach to our treatment," commented Jessica Smith on the current condition of UK’s endometriosis care.
She thinks the registry can help the government to understand and close the data gaps in endometriosis care, by adding it to the government’s Women’s Health Strategy.
Endometriosis occurs when cells like those in the lining of the uterus grow in other parts of the body, causing pain and swelling during periods.
Common symptoms of it are severe pain, heavy periods, fatigue and, even infertility.
The Department of Health has not directly responded to the petition.
However, they stated: "This government is determined to improve endometriosis care and this year we've made two new treatments available as well as investing £80 million to give GPs faster access to specialist advice," said a spokesperson from the Department of Health and Social Care.
