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Endometriosis: Escaping the Unknown

For decades, Endometriosis has been a debilitating mystery that has left as many as 1 in 10 women of reproductive age suffering in silence or being ignored. However, positive change is upon us.

Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes causing chronic pain and discomfort. Unfortunately, it is a long-term condition with no cure at present.

Despite its prevalence, misdiagnosis for Endometriosis is common and treatment tends to be delayed. Endometriosis is inherently difficult to diagnose because the symptoms share similarities with other conditions such as Polycystic Ovary Syndrome (PCOS), Irritable Bowel Syndrome (IBS), and more.

For many women, getting diagnosed can be an exhausting process as Endometriosis can often be dismissed as ‘women’s troubles’.  A recent study in January 2024 showed that women are left feeling dismissed, disempowered and demotivated when trying to access help and support[1].

Currently, it takes on average a staggering 8.5 years to get a diagnosis in Scotland[2]. Sadly, women’s reproductive health is chronically underfunded hence why this condition is only being explored and recognised in recent years. 

The growing awareness began in August 2021 in Scotland, when the public health minister Maree Todd introduced a 68-page plan[3] in a bid to expand the healthcare provisions given to women across the country.  This was ground-breaking as Scotland was the first country in the UK to have a Women’s Health Plan.

A four point plan has been introduced to combat Endometriosis[4]. The plan aims to establish a baseline standard for Endometriosis care and support, facilitate relationships between healthcare services and other clinical networks, increase menstrual wellbeing education in schools and, build Endometriosis awareness; the ultimate goal is to achieve faster diagnosis for women.

Researchers across England and Scotland have been awarded nearly £250,000 by Wellbeing of Women and the Scottish Government to investigate a new drug called dichloroacetate to see if it is an effective treatment for endometriosis. This research is being conducted by The University of Edinburgh and The University of Aberdeen who are paving the way into this essential research into Endometriosis. If successful, the drug could be the first ever non-hormonal and non-surgical treatment for endometriosis – the first new treatment in 40 years[5]. At present, the current treatments offered in the hope to alleviate symptoms are limited to hormone therapy, general pain relief medication or laparoscopic surgery. 

From a legal perspective, the wider impact on female reproductive health must be considered, such as their quality of life, inability to work due to pain, and fertility issues. It is an established fact that early intervention can be life changing on women’s fertility. In Scotland, in order to prove that there has been medical negligence in a patient’s care, it is necessary to satisfy the test set out by Hunter v Hanley[6]. This requires proving that a medical professional has followed a course which no ordinarily competent professional would have done, if using ordinary skill and care. If, for example, early intervention and treatment was available and could have been offered and a medical professional failed to do so, a decision no other medical professional would have made, this could give rise to a claim in medical negligence.  It is also necessary to satisfy a second test, that, on the balance of probabilities, the injuries suffered are a result of that delay. These will undoubtedly include a longer time enduring chronic pain and fatigue and may include the lack of early intervention and/or treatment, caused the infertility. 

As a female led team, we have been inspired by this research and are dedicated to support women in navigating the legal issues surrounding women’s health. Endometriosis can no longer be regarded as unknown territory for health professionals.  Ultimately, Maree Todd was correct when she said ‘Women’s health is not just a women’s issue.[7]

[1] Report: A COM-B and Theoretical Domains Framework Mapping of the Barriers and Facilitators to Effective Communication and Help-Seeking Among People with, or Seeking a Diagnosis of, Endometriosis  published in the Journal of Health Communication.

[2] Campaigning in Scotland | Endometriosis UK (endometriosis-uk.org)

[3] Women’s Health Plan: A plan for 2021-2024 (www.gov.scot)

[4] 4-point plan for better endometriosis care in Scotland | Endometriosis UK (endometriosis-uk.org)

[5] UK clinical trial for potential new endometriosis treatment offers hope to millions of women | News | The University of Aberdeen (abdn.ac.uk)

[6]  1955 SC 200; 1955 S.L.T. 213

[7] Women’s Health Plan: A plan for 2021-2024 (www.gov.scot)

This article was also published in the Scotsman on Monday 18th March.