13 Resources You Need to Manage Endometriosis in Australia During Social Distancing
By Mitchell Isakka
This blog is ever-changing. If we forgot something, please send an email to brittany@endo-metrix.com to update us.
After three months following the first confirmed case of COVID-19 in Australia, partial closures of non-essential services remain in place, with the question often being raised “when will lockdown be over?”
The Australian government announced on the 28 April that from Friday 1 May, two adults can expect a date for the easing of restrictions, but have emphasised that disturbances to everyday life will go on for months. The National Cabinet announced the next steps in easing restrictions on Friday 8 May.
People living with a chronic illness often fall between the gaps - especially those living with endometriosis, which tends to already be an overlooked illness. Therefore, we have compiled a list of ways you or a loved one may be affected, and where to turn for help.
In this blog we will cover:
General Advice About Endometriosis
Endometriosis and the Immune System
Thoracic Endometriosis
Seeking Emergency Care While Flaring
Pauses in Surgical Procedures
IVF Treatments
Aboriginal and Torres Strait Islander People
Domestic Violence and Sexual Abuse
Endometriosis Groups to Reach Out to For More Advice
COVIDSafe App
Endometriosis-Focused Fitness and Nutrition Groups
Digital Healthcare Providers
Prescription Delivery Services
General Advice About Endometriosis
Australia, like many other countries around the world, has imposed a partial lockdown on non-essential services in an attempt to reduce the spread of COVID-19. This has interrupted the daily lives of many, in one way or another, with barely any industry being unaffected - healthcare included.
To free up resources and reduce the potential of huge shortages of personal protective equipment (PPE), many non-elective (e.g. non-life-threatening) surgeries have been canceled to further reduce strain on the public and private healthcare system, at a time of an unprecedented collaboration between the sectors.
It is recognised, however, that there is a risk of significant harm to those with chronic conditions, and could also result in missed opportunities for the early diagnosis and subsequent intervention for many others. Therefore, on 21 April, it was announced that from 27 April some elective surgeries will need to be gradually restored. These restorations are in line with the modeling and projections of PPE supplies within the country and also in close consultation with surgical bodies and the Australian Medical Association. Additionally, the Australian Health Protection Principal Committee is continuously releasing updates here.
Endometriosis and the Immune System
Autoimmune diseases occur when the body attacks its cells, tissues, or organs by mistake. Depending on the parts of the body affected, an autoimmune disease can yield a variety of symptoms.
There is no clear cause of endometriosis to date, but the body does have an abnormal immune response when endometriosis is present. Clear evidence does not yet exist, but there is suspicion among researchers that abnormal immune response could be a factor that plays a role in the development of endometriosis.
There is a link between endometriosis and the potential heightened risk of autoimmune diseases like inflammation. Endometriosis causes inflammation, which is also important to the body’s immune response system. This is not a confirmed link, but it is known that inflammation imbalances immune responses.
While endometriosis alone is not currently classified as an autoimmune disease, there is research by the U.S. National Institute of Child Health and Human Development that suggests that people with endometriosis may have a greater risk of developing an autoimmune disease compared to the general population.
Thoracic Endometriosis
It’s estimated that 12% of people with endometriosis experience its growth on non-reproductive organs, the most common being “Thoracic Endometriosis,” or endometriosis of the lungs. Specifically, endometrial-like tissues grow in the lung parenchyma and/or the pleura and can cause chest pain, coughing, and breathlessness.
COVID-19 is an infectious disease that can cause a respiratory tract infection. It can affect your upper respiratory tract (sinuses, nose, and throat) or lower respiratory tract (windpipe and lungs). According to Endometriosis UK, people with pre-existing respiratory (breathing) problems are more at risk, therefore those with thoracic endometriosis could be more at risk.
Lung Foundation Australia is conducting a general survey to improve support and advocacy for at-risk populations, and individuals can request preferred information sources to achieve this. You can also find general advice for people with lung conditions specific to COVID-19 here.
Seeking Emergency Care While Flaring
As a general rule, Australian residents have not been advised to avoid emergency care if required. Knowing what constitutes ‘required’ can often be the gray area for some people, however. Simply put, if you or another person's life is at risk, do not hesitate to call 000. However, if you are unsure, you can call Healthdirect on 1800 022 222 24/7 for free advice. If you are pregnant, have questions relating to childbirth, or have concerns of a child up to 5 years old, you can contact Pregnancy, Birth, and Baby on 1800 882 436. You can also use the symptom checker tool here.
Pauses in Surgical Procedures
As mentioned earlier, non-elective surgeries were temporarily postponed, or in some cases canceled to increase overall healthcare resources capacity. Prime Minister Scott Morrison, on 21 April, announced a list of some procedures that will be allowed to be restored from 27 April. These include IVF, screening programs (cancer and other diseases), post-cancer reconstruction procedures, procedures for children under 18 years old, joint replacements, cataracts and eye procedures, and endoscope and colonoscopy procedures. PM Morrison does not specifically outline which endoscopy procedures shall resume, though if you had a scheduled procedure that may have been affected, contact your healthcare professional directly to find out how this might affect you. The full statement can be read here.
IVF Treatments
Since announcing the lift on the ban of non-elective surgeries, IVF Australia has announced on their website that they are ready to support those who wish to start treatment with them. However, they do advise all to consider if it is the right timing and to stay home when possible and follow social distancing guidelines that are enforceable by the states and territories.
IVF Australia clinics will enhance their infection control and safety protocols and introduce the following measures:
Testing for COVID-19 where applicable
Strict social distancing will be enforced and clinicians will take consultation by phone or video meeting where possible
Everyone entering their clinics will have their temperature checked
Increasing cleaning within all clinics
All the latest information from IVF Australia can be accessed here.
Aboriginal and Torres Strait Islander People
In contrast to non-Indigenous Australians, the burden of disease is 2.3 times higher and admissions to hospital that are possibly preventable is as much as 32 times higher for Aborigines and Torres Strait Islander People. They, therefore, have a higher susceptibility COVID-19, in addition to reduced access to healthcare due to living in a remote and isolated region. Doctors working on the frontline in Aboriginal and Torres Strait Islander communities have informed the AMA that they would not be able to cope with an outbreak due to a lack of resources.
Indigenous communities have been consulted by the states and territories and therefore decided to implement strict travel restrictions in and out of these communities. The latest health-related information for Aboriginal and Torres Strait Island people, including designated areas of restricted travel can be found here.
Domestic Violence and Sexual Abuse
The Australian Government has acknowledged that there may be an increase in the rate of domestic violence and sexual abuse. People impacted by sexual assault, domestic or family violence, and abuse should call 000 if they are in danger. Alternatively, the National Sexual Assault, Domestic Family Violence Counseling Service is operating as usual and can be reached on 1800RESPECT (or 1800 737 732), or chat online 24/7.
Endometriosis Groups to Reach Out to For More Advice
Australian Women With Endometriosis Support Group: With over 7,000 members, this private Facebook group aims to provide support and advice for people in Australia suffering from endometriosis. They are not trained medical professionals and do not offer medical advice, rather a space for providing advice and opinions in a safe and respectful forum.
Endometriosis Australia: This group regularly updates its Instagram with information on managing endo during COVID-19. They also offer additional resources, like support groups, to help you cope emotionally and physically during this time.
COVIDSafe App
The Australian Government released the free and voluntary COVIDSafe app on 26 April to help find close contacts of COVID-19 and assist states and territories to contact people who may have been exposed. Using the app speeds up the manual process of finding people who may have had near-contact with someone who tests positive for the coronavirus.
App information can only be accessed if someone tests positive and the user agrees to information in their phone being uploaded. This helps health officials alert those who may need to be quarantined or get tested. It is the first and only contact trace app to be developed and approved by the Australian Government.
Endometriosis-Focused Fitness and Nutrition Groups
Although they’re not Australian, there are several Facebook groups dedicated to helping people with endometriosis establish and maintain fitness and healthy diet regimens. People who need support while trying to maintain their wellness routines during this isolating time can reach out to the following:
Endometriosis Research Center Fitness Group: This is a companion sub-group to the existing support/education platforms to address the needs of people with endo who are already, or who wish to become, more physically active.
Endometriosis Research Center's Diet & Nutrition Sub-Group: This group was designed to facilitate targeted discussions about food/supplemental intervention for the management of endometriosis. The group is part of the Endometriosis Research Center’s global support and education network and is intended to facilitate - in a closed setting - the exchange of experiences, ideas, information, and education related to nutritional modulators of symptoms. Members may freely share recipes, valid nutrition-related resources which have helped them and to a limited extent, peripheral topics such as endocrine disruptors found in products and food, lifestyle interventions, exercise (which often goes hand-in-hand with diet), physical intervention for the lessening of symptoms (e.g. physical therapy) and more on a case by case basis.
Endometriosis Diet: This group encourages its community members to share recipes, post pics of what they are eating, or things they’d like to try and to share tips and their experiences with managing endo through diet with one another.
Although this isn’t a group, Adrienne has several great videos targeting the pelvic area, upper back, lower back pain, and hip opening. The comment section of this video seems active with fellow spoonies, and they have mentioned that this gentle flow has given them some relief.
Although I haven’t personally practiced these digestion and bloating-focused flows, I religiously used Sara Beth’s prenatal and pelvic floor postnatal yoga videos. She seems genuinely aware of the pelvic, and uses a gentle tone and flow while working out these areas./Brittany
Digital Healthcare Providers
There are several apps and websites in Australia which allow access to healthcare services from home, including:
Docto: is an app and website which provides specialist video consultations and 24/7 medical advice. New patient consultations are 69 AUD and 64 AUD for returning patients. Specialist consultations are from 35 AUD for rural patients and 290 for metropolitan patients.
InstantConsult: An app and website that specialises in Medical Certificates, Prescriptions, Referrals, Pathology Requests and Radiology Requests. Consultations range from 35 AUD to 105 AUD.
HotDoc: HotDoc is an app that provides free online booking services. There may however be costs associated with some clinics. Questions regarding fees and billing should be made with the clinic directly.
Prescription Delivery Services
In response to the Coronavirus pandemic, Australia Post has announced an initiative that allows pharmacies to make next day deliveries to at-risk customers. This is a free service to vulnerable members of the community and starts at a cost is 7.77 AUD for others. More information can be found here.