Endometriosis Awareness Month: Scotland's treatment of women with this painful, under-diagnosed condition is not good enough – Laura Waddell

March is endometriosis awareness month, and stories shared tend towards the long, circuitous paths to diagnosis.

Conservationist Bindi Irwin is one of the latest high-profile endometriosis sufferers to share her experiences publicly, writing on social media that it had taken ten years to find the problem. “I’m sharing my story for anyone who reads this and is quietly dealing with pain and no answers. Let this be your validation that your pain is real and you deserve help.” A month later, after lesion and cyst removal surgery, there was palpable relief in her words: “I can finally see a new me on the journey towards better health.”

Other than a neglectful lack of framework and the sexist history of minimising menstrual pain, one of the difficulties in pinpointing the condition is its range of symptoms, which can affect anyone from teenagers to the post-menstrual. Common symptoms include severe lower stomach or back pain, pain during sex, difficulties going to the bathroom, and excessively heavy and painful periods. Sometimes, there are no symptoms.

I recognise the frustration sufferers report when they talk about being met with indifference by healthcare providers whose guidance boils down to taking painkillers and putting up with it. Some recount the feeling of having to badger GPs into taking their pain seriously, which chimes with my own experiences of seeking treatment for premenstrual dysphoric disorder (PMDD), a condition met still too often with blank stares – and mentioned only twice, fleetingly, in the Scottish Government’s Women’s Health Plan, once more if including the glossary.

Persisting in going back to a dismissive reception takes drawing from the same reserves of self-belief, confidence, and energy that are drained by the process. Many of us have heard fury-inducing but galvanising stories of women being fobbed off the first time, and sometimes many more times after that, who turn out to have been correct in knowing within themselves that something was wrong and needed attention. Another critical case for earlier insight is that ‘endo’ can affect fertility. Ireland’s National Endometriosis Framework, published earlier this month, proposes those with symptoms be treated on the basis of a presumed diagnosis.

The Women’s Health Plan states that reaching an endo diagnosis in Scotland takes an average of 8.5 years – a shockingly long time for sufferers to be left in the dark. “Although endometriosis is as common in women as diabetes and asthma, it has failed to attract the same attention, support and funding as those diseases. Simply put, we know less about how best to treat diseases in women.” An included survey conducted by the All-Party Parliamentary Group found 58 per cent of respondents visited their GP ten or more times before diagnosis – with 53 per cent resorting to a trip to A&E.

The plan’s aims and recommendations on endometriosis include improving education, bolstering national guidelines, commissioning research, and, that “when required, all women will have access to a specialist endometriosis centre”. In their assessment of how things are going, Endometriosis UK, which consulted on the plan, says on their website: “In Scotland, three endometriosis specialist centres exist and were planned to provide specialist endometriosis coverage for the whole of Scotland. However, these are currently being commissioned as local services and for local capacity, and it has been difficult to get a referral if you live in a different health board area. For some, this can mean no access to specialist treatment even if suffering from deep endometriosis.”

Other European countries are a step ahead; Denmark, Italy, and France have specialised national centres for treatment and research. Our endometriosis care is not yet up to scratch.