On behalf of the board of the World Endometriosis Society, we extend our thoughts to those suffering from endometriosis and those endeavouring to care for them during these unprecedented times of COVID-19 lockdown around the world.
by Mathew Leonardi, Lone Hummelshoj, and Neil Johnson
We continue to work with experienced collaborators to carefully consider how to advise those with endometriosis for self-management; as well as provide recommendations for health care providers during, and as we emerge from, lockdown situations globally [1,2].
How does COVID-19 affect those with endometriosis?
Firstly, there is no evidence yet that shows those with endometriosis are at an increased risk of getting COVID-19. However:
- you may experience exacerbations in pain due to breaks in medical or allied health treatment or postponement of surgical treatments,
- you may be more susceptible to the broad psychosocial impacts of COVID-19 that anyone may experience,
- though not confirmed, women with thoracic endometriosis (in the lungs or on the diaphragm) may be more at risk,
- there is no evidence that COVID-19 will accelerate the progression/development of endometriosis,
- your fertility will most likely not be compromised or, at worst, very minimally compromised (in the context of age-related fertility challenges in addition to endometriosis-related infertility).
What are the challenges posed by COVID-19?
The care of those suffering from endometriosis has been complicated by the COVID-19 pandemic and there will be ongoing challenges as life returns to (the new) normal.
The aspects of endometriosis care that are affected include:
- Access to primary healthcare teams, specialist doctors, and allied health professionals (including physiotherapists, psychologists, dieticians, acupuncturists, and, indeed, all members of the multi-disciplinary team that is needed to care for those with endometriosis).
- Postponed investigations including:
- MRIs, and
- infertility investigations.
- Postponed surgeries and/or fertility treatments [3,4].
The changes to everyday life experienced by those with endometriosis may exacerbate symptoms due to:
- possible changes to home life:
- eg. working from home, a partner working from home, home-schooling children; all limiting the ability to attain self-care,
- possible changes to social life and social supports:
- an inability to see friends or family, lost community resources, and connections (endometriosis- and/or non-endometriosis-related),
- restrictions on regular exercise routines.
What are the possible strategies for those with endometriosis?
We believe those with endometriosis warrant special attention during this time.
Always seek guidance from your healthcare provider(s) – but you should also try to be proactive in maintaining and managing your health.
- Maintain contact with your healthcare provider(s) by telephone or online (the so-called ‘telehealth’ consultation), or in-person when deemed safe.
- Even as restrictions ease, we recommend advocating for telephone or virtual appointments if you feel this method of appointment best suits your needs.
- In the absence of surgical treatments, if those with endometriosis need a change in medication, they should discuss with their doctor the treatment options available to them.
Some caution, however, should be exercised with non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, due to concerns around the increased chance of COVID-19 infection if exposed .
- Those at low-risk of exposure may consider the benefits of NSAIDs outweigh the potential risk, deciding to continue use when needed.
- Those at higher-risk for acquisition (eg. continuing to attend work outside of their home or having high-risk household members), may benefit from limiting the use of NSAIDs.
Complementary and alternative management strategies should be considered. Some can be trialled independently, whilst others require guidance from trained healthcare or allied health providers.
Broadly, these can be divided into problem-focused and emotion-focused strategies.
These strategies may require guidance through clinical psychologists or other trained professionals. For example, Acceptance and Commitment Therapy may be accessible through a clinical psychologist via tele-health, targeting each of these strategies.
- self-guided education about endometriosis
- modifying work/school/social life, if possible
- taking advantage of virtual and telephone support provided by national endometriosis organisations
- improving sleep hygiene
- low-intensity physical activity (including pelvic exercises, yoga, Pilates)
- dietary changes
- application of heat, and
- medical cannabis (preferably with the assistance of a healthcare provider).
- relaxation and mindfulness
- acceptance of chronic illness
- reducing catastrophising, and
- improving a balance toward a positive attitude.
What are the possible strategies for healthcare providers?
Firstly, we do not consider it helpful or appropriate to describe surgery or fertility treatments for endometriosis as ‘elective procedures’. Not all ‘elective surgeries/procedures’ are equal. For those with chronic pain that impairs quality of life and activities of daily living, such procedures can be lifesaving.
We encourage clinicians to offer appointments by telephone and/or online, and in-person when deemed safe. Even as restrictions ease, we recommend maintaining telephone or virtual appointments for those of your patients who may prefer this method of appointment and communication.
- Optimise medical management in the absence of surgical interventions.
- Suggest complementary and alternative management treatment options.
- guide patients on how they can learn about or access these options;
- refer to allied health professionals, as should already be a regular part of the care of those with endometriosis  – but if it is not already, now more than ever, this is seriously encouraged.
- Ask for help/guidance from other medical healthcare providers such as those who manage patients with chronic pain in addition to accepted medical and surgical treatments for endometriosis.
- Restart surgical and fertility treatments at the guidance of local and national governing bodies and do so appropriately, triaging patients based on severity and responsiveness to other treatments:
- prioritise those with risk of loss of organs (eg. bowel or kidney) in the presence of restrictive deep endometriosis;
- prioritise fertility patients according to the usual standards (eg. age, waitlist position).
- Strictly follow guidance on personal protective equipment when services resume.
- Strictly follow guidance on minimising risk by modifying logistical factors (eg. staff, hours of operation, hygiene, cleaning services, etc.).
Most importantly, we must continue to listen to our patients and continue to advocate for them to ensure they receive the very best of care it is possible to provide during these challenging times.
- Leonardi M, Horne AW, Vincent K, et al. Self-management strategies to consider to combat endometriosis symptoms during the COVID-19 pandemic. Hum Reprod Open 2020. In Press.
- Leonardi M, Horne AW, Armour M, et al. Endometriosis clinical guidance during the COVID-19 pandemic. Authorea (Pre-print) 2020.
- AAGL – Elevating Gynecologic Surgery. COVID-19: Joint Statement on Elective Surgeries. Published 2020. Accessed 5 April 5 2020.
- American Society for Reproductive Medicine. COVID-19: Suggestions On Managing Patients Who Are Undergoing Infertility Therapy Or Desiring Pregnancy. Published 2020. Accessed 24 March 24 2020.
- Fang L, Karakiulakis G, Roth M. Are patients with hypertension and diabetes mellitus at increased risk for COVID-19 infection? Lancet Respir Med 2020;8(4):e21.
- AAGL – Elevating Gynecologic Surgery. COVID-19: Joint Statement on Minimally Invasive Gynecologic Surgery. Published 2020. Accessed 20 April 2020.