Endometriosis and the impact of the pandemic on diagnosis and treatment

Posted: 12/11/2021

The pandemic has affected us all in a myriad of ways and for those suffering with endometriosis, the impact on their health and wellbeing may have been significant. Arguably, the overhaul of care for endometriosis in the UK is long overdue and the pandemic has only served to highlight this.

What is endometriosis?

Endometriosis is a long-term condition affecting over 1.5 million women in the UK and around 176 million women worldwide. Despite being the second most common gynaecological condition in the UK, women wait an average of eight years from the start of their symptoms to obtaining a diagnosis.

In endometriosis, the tissue that is usually found lining the uterus develops elsewhere in the body, including the ovaries, fallopian tubes, bowel, bladder and even the lungs and diaphragm. This tissue reacts to a woman’s menstrual cycle, just as healthy endometrial tissue does. However, the location of these cells means that, when they bleed, the blood becomes trapped causing inflammation, pain and the formation of scar tissue, as well as fertility issues.

Alongside these painful physical symptoms, many women understandably suffer an adverse impact on their mental health. The APPG Inquiry Report in 2020 found that 81% of those who responded to the survey felt that their mental health has been negatively or very negatively affected by endometriosis and its associated symptoms.

Symptoms of endometriosis often overlap with other conditions, so misdiagnosis is common. The only definitive means of diagnosis of endometriosis is by laparoscopy. As there is no cure for endometriosis, the treatment options are focused on alleviating the symptoms. These options range from conservative pain management to surgical intervention to remove the tissue growths and, most radically, a hysterectomy.

The effect of Covid-19 on waiting lists

Despite the herculean efforts of the NHS and its staff to manage the pandemic, there is now a backlog of postponed treatment resulting from the redirection of resources towards Covid-19 patients which will take some time to clear. The Royal College of Physicians notes that 59% of doctors who responded to its survey estimated that it will take at least 18 months to get the NHS back on an even keel and almost a third believed it will take more than two years.

A survey conducted by Endometriosis UK in May 2021 found that 14 out of 19 medical and surgical specialties have increased their waiting list times since the beginning of the pandemic. Overall, across all specialties, the number of people on a waiting list has increased by 16% during the pandemic.

Of all the specialties, gynaecology has suffered the most, with an increase of 34% since the pandemic began. By way of comparison with pre-pandemic figures, waiting lists in April 2021 were almost two thirds higher than in April 2018. This equates to a third of a million women who are currently awaiting gynaecological treatment, some of whom will have to wait over a year for a referral to a gynaecological specialist.

Inquiry to quantify backlog

For those suffering with endometriosis, this will not come as a surprise. The Health and Social Care Committee has launched an inquiry to quantify the backlog in NHS care due to Covid-19. Evidence submitted to this inquiry by Endometriosis UK highlights the significant difficulties experienced by those with endometriosis during the pandemic. Its research has shown that the majority of those with confirmed or suspected endometriosis have faced challenges in accessing NHS care.

Of the respondents to the Endometriosis UK survey with confirmed endometriosis, 80% had had their NHS endometriosis appointments either postponed or cancelled due to the pandemic. The most commonly reported appointment types that were either cancelled or postponed were gynaecology and/or specialist endometriosis centre appointments (56%), surgery including laparoscopy (39%), and test or scan appointments (32%).

Worryingly, nearly a fifth of those had to wait nine months or more for a new appointment date and a quarter not only had not received a new appointment date but had not been contacted at all.

Prior to the start of the pandemic, 60% of respondents with suspected endometriosis were awaiting an NHS referral or appointment. Almost a quarter of these were for a GP referral to specialist care and 15% were for a surgical referral.

Of those respondents who already had NHS appointments arranged prior to the pandemic, nearly 40% had their appointments cancelled or postponed as a result of the strain placed on the NHS by Covid-19, and over a third of these were for specialist care. Compared to the quarter of those with confirmed endometriosis, half of those with suspected endometriosis had not only not received a date for a rescheduled appointment but had not been contacted at all by the NHS.

As well as the challenges faced regarding appointments and access to care, almost 80% of those with confirmed endometriosis and 73% of those with suspected endometriosis said that the impact of the pandemic had made their mental health worse or much worse, with the difficulties in accessing NHS care being a significant driver.

Delay is not a new challenge

Unfortunately, although these are concerning figures and the pandemic has clearly had a significant impact, the delay in NHS care for those suffering with endometriosis is not a new challenge.  Prior to the pandemic, the NHS lacked an overall strategy to measure and meet the demand for endometriosis care in England. Although there is a NICE Guideline and NICE Quality Standards setting out the recommended care for endometriosis treatment and management, this has yet to be fully implemented.

The inquiry evidence by Endometriosis UK stated that, although most respondents with confirmed endometriosis had not obtained private care for their endometriosis during the pandemic, 65% of those that did had never done so pre-pandemic. Private care was reported as most commonly sought for gynaecology and specialist centre appointments, and for surgery including laparoscopy. Clearly, private care is not an option accessible to all and many are left with no choice but to rely on NHS care and wait out the delays.

For those with suspected endometriosis, obtaining a diagnosis is a vital element to accessing the correct care and support and, in the case of either confirmed or suspected endometriosis, delays in accessing the right care may result in disease progression and the suffering of debilitating symptoms that could otherwise have been avoided. It is therefore imperative that addressing the backlog is treated as a priority and that strategic planning is put in place to manage endometriosis care as soon as possible.

The clinical negligence team at Penningtons Manches Cooper specialises in women’s health issues and has experience of investigating claims on behalf of clients who have spent years with endometriosis symptoms, potentially as a result of a negligent misdiagnosis or delayed diagnosis.

If you would like to discuss any concerns about the endometriosis care that you have received, please do not hesitate to contact a member of our team.

This article was co-authored by trainee solicitor Laura Tozer.

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