Endometriosis is one of the most common gynaecological conditions, affecting approximately one in ten women and people with periods globally. Characterised by debilitating chronic pelvic pain, fatigue, and even the potential of infertility, endometriosis can have a significant impact on people’s lives. The condition causes problems with relationships and sex life, difficulty in fulfilling work and social commitments, and impacts physical and mental wellbeing. However, this exhausting chronic condition is frequently under-diagnosed, with an average diagnosis time of eight and a half years in the UK. Campaigners advocating for improved diagnosis times and overall care for those affected by endometriosis have attributed these unacceptable delays in diagnosis to the “gender pain gap”, arguing that archaic disparities in women’s healthcare have driven misunderstanding and misdiagnosis of gynaecological conditions for decades. Furthermore, several studies have identified that endometriosis is a “neglected area of research and funding”, with academics, clinicians, and patients alike calling for greater research into the condition and future treatment options.
What is Endometriosis?
Endometriosis is a condition where cells akin to those in the lining of the uterus are found elsewhere in the body, most commonly around the reproductive organs, bowel, and bladder. During the monthly menstrual cycle, these cells react and behave in the same way as those in the lining of the uterus – being builded up and bleeding every month. However, with no way to leave the body like typical endometrial blood, the blood becomes trapped, causing inflammation, formation of scar tissue, and pain. Although some people do not experience symptoms, others can endure debilitating chronic pelvic pain, painful sex, painful bowel and bladder movements, and difficulties in becoming pregnant. The gold standard of diagnosis is an exploratory laparoscopy– a procedure that involves inserting a small telescope into the abdomen to look at the internal tissue for signs of endometriosis. Treatments for the condition are not curative; instead, they seek to reduce symptoms. These can include hormonal treatment such as the combined oral contraceptive pill, pain relief, and surgery, including hysterectomy – an operation to remove the uterus.
Endometriosis Action Month: Scottish Parliament Panel Debate
Endometriosis UK, the leading UK charity committed to providing information and support to those with endometriosis, dedicated March 2022 as their official Endometriosis Action Month, calling for improved diagnosis and management, reduced diagnosis times, increased endometriosis service resources, greater healthcare practitioner awareness, and more funded research into the condition of endometriosis. As part of a plethora of events, Emma Cox, CEO of Endometriosis UK, hosted a virtual event, titled Endometriosis Action Month: Scottish Parliament panel debate on 15th March, with Monica Lennon, Scottish Labour MSP for Central Scotland, and Maree Todd, Minister for Public Health, Women’s Health and Sport to discuss the provision of, and barriers to, diagnosis and care in Scotland for endometriosis. In addition, they pledged support and action to help patients receive the highest standard of care possible.
Speaking at the event, Monica Lennon passionately voiced her support for ending the pain and isolation caused by the condition. Acknowledging the adverse effects of the COVID-19 pandemic on endometriosis treatment services, Lennon said, “for anyone living with a chronic condition, effectively the NHS was put into emergency measures and many of your treatment options were taken away – so that has been really tough.” She went on to say that, “early diagnosis is obviously important, better pain management is an urgent issue and finding the right treatment at the right time is an ongoing challenge.”
Referencing Endometriosis UK’s slogan, “End the silence, end the pain, end endometriosis”, the MSP noted that many people find the journey to initial diagnosis incredibly challenging, with patients finding self-advocacy for adequate care “exhausting and traumatising”. Lennon added, “we have this really important mission to reduce the average diagnosis time from 8 and a half years down to 12 months by May 2026 – the end of this Parliament term”, but she also stressed that this will require considerable monitoring and collaborative work.
The MSP concluded her enthusiastic remarks by saying, “we need to challenge gender inequality wherever it exists and that includes medical misogyny. We are seeing people who can ill afford it turn to private healthcare when they should be able to get the right treatment at the right time on the NHS.”
Her remarks follow her submission of a motion in the Scottish Parliament to improve the care for endometriosis in Scotland, stating that Parliament welcomes the Endometriosis UK report, Analysis of Endometriosis Service Provision in Scotland, and accepts commitments made in the Scottish Government’s Women’s Health Plan: A Plan for 2021-2024. The plan aims to reduce the average waiting time for a confirmed endometriosis diagnosis from eight and a half years to twelve months by the end of the current parliamentary term, as well as to implement the National Institute for Health and Care Excellence’s (NICE) guideline and quality standard on endometriosis across Scotland to ensure the basic level of care is met. This would facilitate relationship development between healthcare services through Managed Clinical Networks to allow for smoother referrals and increase education at primary and secondary care levels. The motion also acknowledges the requirement for greater endometriosis awareness through a public health campaign, and improved menstrual wellbeing education in schools.
Maree Todd MSP echoed these calls for action in her remarks regarding the Women’s Health Plan, advocating for a reduction in sex-specific health care inequalities, improved access to services, greater emphasis on menstrual education. Furthermore, she stressed the significance of early presentation of the condition, support for GPs to make a diagnosis, reduced laparoscopy waiting times for those wishing to obtain a confirmed diagnosis of endometriosis, as well as the importance of caring for women’s mental health and timely treatment in tandem. Maree also referenced the development of an endometriosis care pathway in Scotland, that will “individualise earlier intervention, support within GP practices, and streamline referrals where required”, with an expected timescale of a six month period to trial hormonal treatments before referral to a specialist gynaecologist for further investigation and diagnosis.
Endometriosis UK, Monica Lennon MSP, and Maree Todd MSP, all emphasised the invaluable input and insight of those who currently live with the condition as well as the importance of having a platform for their voices to be heard. This point becomes particularly pertinent when thinking about the countless women and people with periods who have reported being dismissed, not listened to, and simply ignored by healthcare professionals in regards to their pain for decades.
Britt Gibson, leader of Glasgow’s Endometriosis UK’s Facebook group, spoke at the virtual event about her own experience with the condition. Britt was diagnosed with both endometriosis and adenomyosis – a condition that occurs when tissue that normally lines the uterus grows into the muscular wall of the uterus – after nearly a decade of being “gaslighted” by medical professionals who did not take her seriously. During the event, Britt noted that although the endometriosis community is pleased to see action, such as the Women’s Health Plan, communication with patients regarding their care has been a considerable issue. She said, “a lot of people with endometriosis are sitting in excruciating pain. Their pain is affecting their mental health and their overall well-being and they’re not having clear communication from the health board or the hospital.”
For too long, women’s and people with periods’ voices have been dismissed and ignored, with medical misogyny sadly still a long-standing barrier to our fight for health equality. For those whose lives have been affected by endometriosis, the calls for action made in this debate will surely be welcomed, with particular emphasis on improved diagnosis, treatment accessibility, and education. However, only time will tell whether these significant advances in endometriosis care will be fulfilled. If they are, they have the capacity to improve the quality of life of millions of people through improving the profile of women’s conditions and healthcare for all.
To watch a recording of the whole event, Endometriosis Action Month: Scottish Parliament Panel Debate, visit www.youtube.com/watch?v=sTbnAiuSmZw.
For information and support regarding endometriosis, visit www.endometriosis-uk.org or contact your local GP.