The waiting time between a woman in Scotland first seeking help for endometriosis and finally being diagnosed is now more than a decade. The Scottish Government is acting to improve women’s healthcare but these latest figures show just how far we have to go, writes Rebecca McQuillan

Endometriosis can be a harrowing disease.

Sometimes dismissed as just heavy periods – which are bad enough – it’s so much more than that. Women describe it like an uninvited guest turning up every month for days at a time – an uninvited guest with sadistic intent. It brings persistent and distracting pain. For some, pain never goes away. Caused by cells like those that line the womb growing in other parts of the body, it’s not very surprising it causes such distress.

But women and girls with endometriosis have long described their struggles to have the condition taken seriously.

They report being doubled over in pain. They report migraines and having to take days off school or work regularly. They often report repeated visits to a variety of doctors but still having difficulty getting diagnosed.

Now the charity Endometriosis UK has published stark data exposing the problem, showing women in Scotland are waiting a decade for diagnosis, from the first time they seek help. The precise figure is 10 years and two months, up from eight years and six months in 2020. This compares to a UK average time of nine years and four months. That is a truly extraordinary time-lag for a condition affecting an estimated 10 per cent of women and those assigned female at birth, and presenting with such high levels of pain and distress.

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How can it be happening? Partly the reasons are specific to endometriosis, with some doctors pointing out it can be hard to diagnose confidently. There have also been very long waits for gynaecology appointments – the main route to diagnosis – since the pandemic. The Herald recently revealed that as of September, waits for gynaecology had gone up 250 per cent in seven years, with women from ethnic minority communities disproportionately affected.

But there are other reasons too which reflect something deeper about how women’s health has historically been treated. Many women – 82 per cent in the recent Endometriosis UK survey across Britain – say that prior to diagnosis, the severity of their symptoms was not believed or they were treated dismissively. Why? The answer won’t always be gender discrimination – sometimes the doctor simply won’t recognise what they’re seeing as endometriosis – but the sheer number of women reporting the same attitudes should certainly give pause for thought.

Endometriosis is under-served by research and consequently poorly understood. There are some persistent myths about it, including that it overwhelmingly affects women over a certain age, when in fact many girls experience it from puberty. Again, given its prevalence, this is extraordinary.

That in turn reflects a wider picture of certain women’s health issues being under-researched. This applies to gynaecological issues like fibroids and polycystic ovary syndrome but other things too.

It’s been said that historically, women were seen in terms of medical research as “little men who have babies” instead of individuals with different physiological make-up and healthcare needs. Even today, women’s health accounts for a tiny fraction of research in spite of the level of unmet need.

Analysis of medical research data in the UK between 2019 and 2023 showed that there were about half the number of female-only trials in the UK as male-only ones, even though there are no fewer female-only diseases.

In clinical trials involving both male and female patients, men often greatly outnumber women. Pregnant and breast-feeding women were particularly under-represented.

There are perceptions that women can be harder to recruit to trials and, with women of child-bearing age in particular, there is an abundance of caution. The thalidomide case of the 1960s when pregnant women took a drug that resulted in thousands of severe birth defects and many deaths in infancy, led to a cautious approach to enrolling women of child-bearing age in trials. We are still experiencing the shadow of that and it’s having an impact on vital research into treatments for pregnant women and those of a similar age.

But there’s also a perception that certain conditions are male issues, even when they’re not. Heart disease, for instance, is the single biggest cause of death among women around the world, but is often thought of as a predominantly male problem. The European Society of Cardiology says women’s heart health is under-recognised and under-researched.

A study by Aberdeen University just over a year ago found that women in Scotland weren’t receiving the same care as men following a heart attack. They were less likely to get preventative medicine that could reduce their chances of further cardiovascular events.

For endometriosis patients, treatment options have barely changed in decades and there’s a history of it being neglected.

Like so many instances of women getting a bad deal, no one is setting out to make that happen, it’s just that old ways of doing things aren’t serving them well.

The Scottish Government deserves credit for recognising that there’s a problem and starting to address it. Like the other UK nations, it has a women’s health plan which it has just renewed. This includes “transforming” gynaecology services as a top priority, with waiting times the focus. The signs are encouraging, with some recent drops in waiting times at last. It has made efforts to improve education of GPs and others in primary care about endometriosis, so they feel more confident making a working diagnosis of the condition earlier. Extra money is going into gynaecology services. That’s the impact of having a women’s health focus and a team driving the work forward.

But we’re only just getting started. We need to maintain the momentum because gynaecology waiting lists are still way too high. Increasing the capacity of specialist endometriosis centres would help.

It’s impossible to ignore the frequency with which the alarm is raised about women’s health services. Issues such as endometriosis care, maternity services (which The Herald recently investigated) and gynaecology are too often reported as falling short. Important change has begun but from research and diagnosis to treatment and care, it looks like being a long time before we can say women are truly getting the healthcare they need.

Rebecca McQuillan is a journalist specialising in politics and Scottish affairs. She can be found on Bluesky at @becmcq.bsky.social and on X at @BecMcQ

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