Lessons from the Pandemic: How Can We Provide Better Care for Endometriosis Patients?
by Dannielle Stewart | Registered Nurse
Lessons from the Pandemic: How Can We Provide Better Care for Endometriosis Patients?
In 2020 the COVID-19 pandemic changed the way we lived our lives, it changed the face of medicine for patients and providers. For many with chronic illnesses, it showed the world what it was like to live at the mercy of one’s health, to be forced indoors to protect oneself and others, to be unable to participate in what society considers normal. It also highlighted and exacerbated existing issues within our global public health systems to address the needs of patients with endometriosis and persistent pelvic pain. In the face of mounting COVID-19 cases, lockdowns and unprecedented stress on public hospitals, services switched gears to ensure that those who were critically ill were given the best chance of survival. Health services and frontline professionals were forced to respond to an ever changing situation, not ever knowing what was coming next, to say it’s been challenging is an understatement. While focus has understandably been on weathering the storm that is a global pandemic, it would be foolish to suggest that there has not been a significant impact on patients. It would also be foolish of us not to learn from what the pandemic has shone a harsh light on, to make things better for the millions worldwide living with endometriosis.
I worked in a public hospital in Australia for the first two years of my nursing career before moving to the south of England in 2019 to work in theatre and recovery. I’ve watched the evolution of the pandemic from that first lockdown in 2020 to now. It’s been hard on us as frontline clinicians. I didn’t meet a lot of my new recovery colleagues when I first started because they were redeployed to ICU. I can still remember doing safety checks one morning and spotting a colleague I’d only spoken to about twice, but who had been kind and ever-smiling (even behind the mask…you can tell) both times. They had been on night shift in ICU and walked through, late off, and they looked completely shattered and defeated - and I knew a lot of us would look the same before too long. I also saw the effect on my patients, like the one who cried after their major surgery not because it hurt, but because they’d been waiting for ten months to have it. I’ve been that patient, waking up from surgery sobbing because after two years it had finally happened.
There’s something about the pandemic that has made having endometriosis feel more weighty, a lack of ease in navigating a system I once knew so well. The moment I felt this most prominently was a few months into lockdown, when restrictions first began to ease ever so slightly in England (not knowing that the next wave was coming), a glimpse of a future. I had a bad flare up for the first time in nearly a year and it happened in the middle of my shift. The pain was so sudden and so overwhelming, and eventually ended in me going to emergency, still in my scrubs, a few shifts later just as I thought I was feeling better. In this moment I walked into our store room and sat in the corner on the floor, because it was so much so quickly that I worried I wouldn’t even make it down the hall to the bathroom without passing out. I sat in the corner wondering what I would do. I had no pain relief, GPs weren’t seeing anyone in person unless essential, and the surgical patients I was recovering were all emergency or urgent - endo wasn’t on that list. I knew where endometriosis fell in the scheme of a pandemic, and while I understood, I was scared. It’s because of this that I’m grateful for the colleague who got down on the floor next to me and asked what they could do to help, and when I said nothing offered me the only thing I could reliably count on: their understanding and their support. Nearly two years later I can still say that understanding and support has been more readily available and reliable than quick access to a GP and pain meds as community medicine continues to feel the strain and legacy of the pandemic.
In the UK, the average diagnostic delay between onset of symptoms and diagnosis is 7.5 years, similarly in Australia it’s 6.5 years. Even before the pandemic those with confirmed and suspected endometriosis faced a number of significant and entrenched barriers to diagnosis that impact on quality of life, fertility, and co-morbidities. Endometriosis is a challenging beast, it takes expert, multidisciplinary care to manage, but getting started requires an open door, a gateway. It requires someone to listen, someone to refer, and someone to go and look for it, which means a laparoscopy. In both Australia and the UK, patients waiting for endometriosis surgery (both diagnostic and operative) have been forced to wait. As I’ve highlighted above, in the initial throes of the pandemic services were slashed to the bare minimum because as providers we were overwhelmed and needed to pour our efforts into the fight. But as time has gone on and we’ve learnt to adapt, learnt about COVID, and learnt how to more appropriately trim services in response to new waves, many patients have felt the brunt of governments and organisations (and not the health professionals treating the conditions) deciding what’s essential and what’s elective.
In the UK, endometriosis surgery is available through the NHS. 17 BSGE accredited Endometriosis specialists centres exist that must demonstrate a number of criteria (including an endometriosis specialist lead consultant, sufficient workload to maintain surgical skill for complex cases, and an endometriosis nurse specialist) in order to obtain and maintain this accreditation. Like many places in the world, the number of qualified excision surgeons is simply not enough for the number of patients requiring expert excision. While BSGE guidelines highlight that severe endometriosis, in particular, should be handled not by one surgeon, but by a team that is able to safely operate on other structures such as ureters and the bowel, it’s worth noting that excision is the gold standard for all endometriosis (highlighted by the Center for Endometriosis Care in the US). This approach emphasises the importance of skilled surgical excision for the disease, but it faces the same issues as many public health services - demand often outstrips supply of surgeons and clinicians. Like their Australian counterparts, British patients often face long waiting times or are pushed towards private options - which are not accessible to all due to the financial burden. In the UK the NHS faces the unique challenge of one national system for an exceptionally dense population - both hospital and community services such as GPs and district nurses. In Australia, the major barrier to care in public health is not only waiting times and demand for services, but the fact that even for named endometriosis referrals, one is not guaranteed an endometriosis specialist.The same issues are echoed across the world: there are simply not enough properly trained excision surgeons with the skill and expertise to diagnose and treat endometriosis. In fact, recognition of the severity of the disease, the need for prompt intervention to preserve quality of life and fertility and the futility of treating severe disease medically is widely under-recognized. This lack of recognition and acknowledgment can be and has been exceptionally damaging to individual patients and the community as a whole.
One needs only to look at referral criteria for known or suspected endometriosis in an Australian public hospital setting- there is no category 1 criteria, with category 1 implying that a patient needs to be seen for an outpatient appointment within 30 days. To be seen within 90 days Cat 2) a patient needs multiple emergency presentations, evidence of severe disease such as bowel or bladder dysfunction or endometriomas on ultrasound. Without this, to even be seen by a gynaecologist may take up to a year under category 3. Specialist clinicians know that severe disease may not present as severe pain, and that mild disease can still be painful and debilitating, and therefore benefit from excision surgery. For those with severe disease, such as deep infiltrating endometriosis affecting the bowel, kidneys, ureters or thoracic cavity - longer waiting time and diagnostic delays can have an effect on organ function. Bowel resections resulting in stomas, collapsed lungs, kidney failure - these are the end consequences of severe disease for some with endometriosis. They represent the extremes of the disease, but they’re both entirely possible, and entirely preventable. This doesn’t start in hospitals, it starts in communities, in universities where our health professionals train, and firmly establishes once and for all that severe pelvic pain isn’t normal and that endometriosis is not a “bad period”, it’s a serious multi-organ disease. It starts with listening to the patients who are experts in their own care, and validating their experiences. Only in acknowledging this as serious and not as merely a “menstrual disease” can we ensure that our approach to treatment is appropriate, and doesn’t leave people waiting in pain.
The pandemic has opened the conversation about which surgical interventions are considered non-essential, and endometriosis and fertility procedures were placed firmly in the “elective” category when a fresh lockdown came along. Considering what we know about the disease, the strides we have taken in Australia and the UK thanks to patients being their own advocates and engaging in the unpaid labour that is education of themselves and others, as well as those dedicated specialists advocating for best practice, is this not a learning opportunity? The increased wait time for those already waiting months and years for surgery in the public sectors has had an effect on the endometriosis community. A study out of Oxford in 2021 that recruited more than 6000 participants found that 80.7% reported a negative impact on their endometriosis care due to COVID-19, with significant impact felt in obtaining medications, cancellation of specialist appointments and cancellation of procedures. This study also highlights the need for us to learn from the issues the pandemic has further exacerbated, as the authors noted that worldwide participants’ priorities were remarkably similar: contact with gynaecologists, knowing when procedures would be performed, and support with mental health. Endometriosis is not non-essential, and those affected live with a great deal of uncertainty and often significant disability - as we continue to learn to live with the pandemic and its effects, we must learn to prioritise endometriosis care as important - alongside illnesses that affect people on the same scale such as asthma or diabetes.
As we enter Endometriosis Awareness Month 2022, I’m sure we all feel the fatigue of the last couple of years, and tire of the same pleas and empty promises. We know the state of living with endometriosis and what we need is real and lasting change, we’re done waiting. Endometriosis is not elective, it is not non-essential. The pandemic changed so many things about the world, let’s change something for the better.
References
https://cpc.health.qld.gov.au/Condition/120/known-of-suspected-endometriosis
https://www.qld.gov.au/health/services/hospital-care/waiting-lists
https://www.bsge.org.uk/requirements-to-be-a-bsge-accredited-centre/
https://www.england.nhs.uk/wp-content/uploads/2018/08/Complex-gynaecology-severe-endometriosis.pdf
Demetrious, L., Cox, E., Lunde, C., Becker, C., Invitti, A., Martinez-Burgo, B., …Vincent., K. (2021). The global impact of COVID-19 on he care of people with endometriosis. Front. Glob. Womens Health. https://www.frontiersin.org/articles/10.3389/fgwh.2021.662732/full
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