Endometriosis and PCOS need better funding and research to improve treatment outcomes for women
3 min read
There are several theories, but scientists don’t know what causes endometriosis or polycystic ovary syndrome (PCOS). Despite being conditions which respectively affect one in 10 and one in five women around the world, there are a lot more unknowns around both.
As an ambassador for the charity Endometriosis UK, I’m delighted that funding for both this condition and PCOS will be debated in parliament today. I hope it can achieve the sort of change which our supporter, the late Sir David Amess MP, had worked so hard to achieve before his tragic death.
The current unknowns around endometriosis mean that diagnosis is notoriously difficult, taking a woeful average of eight years and 10 GP appointments after symptoms first appear, during which time women are ignored, misunderstood, or suffer gaslighting from the medical profession and employers. The condition leaves 90 per cent suffering with depression. Existing treatment options are limited, don’t work for everyone, and leave some in chronic, intractable, debilitating pain.
In case you don’t know - and you’re certainly not alone in not knowing, especially if you’re male - endometriosis is a gynaecological condition characterised by chronic pelvic pain, painful periods and pain during sex. It and PCOS are spectrum disorders, meaning they can affect different women in very different ways. Both have a strong association with infertility, compounding the pain they cause, given how patchy access to infertility treatment is. And the two often co-exist, leaving double the unknowns and hurdles for those with them.
In the last year and a half, we’ve seen medical science and healthcare rapidly innovate to combat an international healthcare challenge.
Endometriosis and PCOS are also global healthcare challenges, with more total cases than Covid-19 for that matter. But they only directly affect women and those assigned female at birth, and are therefore taboo or uncomfortable for many men – and women – to discuss.
Women are ignored, misunderstood, or suffer gaslighting from the medical profession and employers
Women often get a raw deal from medicine; waiting on average 15 minutes longer than men to receive pain relief when attending A&E, and causes affecting them get far less research, funding and attention. This leads to poor treatment, mental health issues, and individuals feeling debilitated and trapped by their condition as society and doctors are unable or unwilling to take it seriously. Burdens which inevitably fall even more heavily on those from ethnic minorities.
Endometriosis is a classic example of this, although there has been a welcome increase in public awareness and understanding in recent years. The work of the APPG on Endometriosis has been key to that.
Through the APPG, I came to know Sir David. He was an inspiration, a true champion of those affected by endometriosis and also PCOS. As well as being a dreadful tragedy for his loved ones, his death is a huge loss to the health and welfare of women across this country and beyond.
Right now, only 2.1 per cent of publicly funded research in the UK goes on reproductive and menstrual health, and the UK’s National Institute of Health Research has only ever funded 10 projects on endometriosis.
Investing in research for both endometriosis and PCOS will translate to not just better outcomes for women and girls who are affected, but also success for our wider communities.
It is time for women’s health to become a mainstream topic at home, work and school. We need women and girls to know that their health and welfare is being as taken seriously by society, as it was taken by Sir David.
Dr Larisa Corda is an NHS Obstetrician and Gynaecologist. She is also an ambassador for Endometriosis UK.
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