A Department for Health and Social Care spokesperson said the government was determined to speed up diagnosis of endometriosis. It is also prioritising research into women’s health and redesigning the way patients get help for pelvic pain and endometriosis, to reduce repeat appointments, unnecessary referrals and long waits, the spokesperson said.
Streeting also said he would look into lack of specific funding for endometriosis research – after I raised the examples of Australia and France having created national action plans for the disease. “There is more money going in, but I take up your challenge that there needs to be more of a dedicated focus,” he said.
This is a condition that costs the economy £12.5bn because it leaves women unable to work in addition to the healthcare costs, Dr Lucy Whitaker, an endometriosis researcher at the University of Edinburgh, told me. She said an estimated one in six women with the condition in the UK ends up leaving the workforce permanently because of its effect on their health.
It may not kill women. But for so many I have been talking to, it is a living death. They cannot work, be in relationships, care for their children (if they can have them), or simply just be in their own bodies, peacefully.
While ill, they have to beg doctors to believe them and somehow assemble their own care team to try to help them live with a disease that has so far outfoxed the best minds worldwide. Even if they come under the care of one of the rare specialist endometriosis centres, it is still a battle to know which way to turn.
Women with endometriosis want to be cared for, properly. But doctors need answers too. This means much more focus on endometriosis by researchers in ambitious projects and from the people that fund them. And to keep going until the mystery is solved.
We cannot leave women living within the teeth of this vicious disease.
