A new women's health strategy for England offers hope to people suffering with a debilitating condition many don't know they have, but a charity warned there are still "worrying gaps" in relation to the disease.
The government's strategy, published on Wednesday, July 20, aims to reduce gender inequality in healthcare and includes commitments to train new doctors in women's health and to update guidance for treating "female-specific health conditions like endometriosis". This chronic pain condition affects roughly one in 10 women, and some trans men and non-binary people. But a lack of research, funding and credibility given to women's health means little is known about what causes it, many people with the condition struggle to get a diagnosis, and treatment options are limited.
Rozie Corbett, head of development at the Endometriosis UK charity, said: "The Women's Health Strategy is long awaited and much needed for the endometriosis community, and comes at a key time when gynaecological waiting times are soaring and diagnosis time for endometriosis is an unacceptable 8 years – a statistic that hasn't improved in a decade. We are glad that those with endometriosis are finally being recognised.
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"There is much to be welcomed in this new strategy - but it also has worrying gaps. We are left without a clear target for reducing the unacceptably lengthy waits for diagnosis and appropriate treatment faced by those with endometriosis, and clarity on areas including research funding, education for doctors, and how to ensure there is the right resources and capacity to deliver the plan."
People with endometriosis have previously told the ECHO about the pain and mental anguish they suffered for years while asking for help from doctors who didn't believe or suspect they had the condition. Endometriosis, "common, sometimes debilitating but often-ignored condition", involves the growth of tissue similar to the lining of the womb growing elsewhere in the body.
Lasting from puberty to menopause, this causes bleeding and severe pain, particularly during periods, and the growth of tissue can fuse organs together, block them, and cause fertility problems. One woman with endometriosis said she left a concert "saturated with blood" when she was 17, which doctors dismissed as a heavy period, leaving her to wait another decade before receiving an accurate diagnosis.
Endometriosis UK called on the government to set a target of under for years for diagnosis by 2025, to be reduced to under one year by 2030, which would be in line with the targets recently announced by the Scottish Government.
The charity welcomed the commitment to improving access to endometriosis services, and to contraception as treatment for menstrual problems. But it stressed that such contraceptive and hormonal treatments aren't always appropriate, and it criticised the government's focus on so-called "severe endometriosis".
It also expressed disappointment in the failure "to undertake strategic capacity planning of endometriosis specialist centres", and called on the government to use more inclusive language to recognise that some of 1.5m people in the UK with endometriosis do not identify as women.
Rozie said: "It is also concerning that the new Integrated care systems (ICSs) are only 'recommended' rather than mandated to incorporate this strategy when developing service plans. This could lead to varying degrees of implementation and therefore service quality across England. We look forward to working with the Government, Dame Lesley Regan and others to ensure an end to the postcode lottery, and that all those with endometriosis or suspected endometriosis receive the right care at the right time."
Lucy Chappell, Chief Scientific Advisor at the Department of Health and Social Care, and Chief Executive Officer of the National Institute for Health and Care Research (NIHR), said: "The gender health gap stems from a range of factors. Over the years, we have seen less research into health conditions that affect women and this gender data gap has had a significant contribution on the impact of such research.
"The NIHR has made good progress in this area, from increased research on conditions such as endometriosis to boosting participation of women in trials and supporting female researchers. The publication of this strategy builds on that progress, and will help ensure women’s voices and priorities are at the heart of research."
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