13 Resources You Need to Manage Endometriosis in Sweden During Social Distancing

 

by Brittany Villegas and Charlotte Myers

This blog is ongoing. If we are missing something, or if you have received advice that you think should be shared with the rest of the endo community, please let us know in the comments, message us on Instagram, or send an email to brittany@endo-metrix.com.

As we close in on the peak infection rate of coronavirus, the demand for health services continues to increase, along with the need for hospital beds and intensive care units. Sweden’s Public Health Agency (Folkhalsomyndigheten) suspects that Stockholm is further along the curve compared to other parts of the country, but all regions of the country need various types of hospital beds.

The peak need for health care services is expected to arrive around 80 days after “day zero.” This is the moment of a rapid incline in the mapping of seriously ill individuals. As we approach that point, it is helpful to be aware of how the health system can support individuals who are dealing with COVID-19 as well as managing their conditions, including endometriosis.

To help you manage endometriosis and to digitally maintain your health and wellness routines, we’ve created this space with resources and tips on how to navigate the Swedish healthcare system.

If you have additional questions regarding COVID-19, you should call 113 13. This number is available for the Swedish public to receive information about accidents and crises. Callers can inquire about further information on COVID-19, but not to discuss symptoms. To discuss symptoms you may be having with a healthcare professional, please call 1177.

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

  • Endometriosis Groups to Reach Out to For More Advice

  • Digital Healthcare Providers

  • Prescription Delivery Services

  • Endometriosis-Focused Fitness and Nutrition Groups

General Advice About Endometriosis

According to Dr. Anna-Sofia Melin, who specializes in gynecology and obstetrics for Capio Gynekologi in Stockholm and runs a resourceful Instagram account called @endometriosdoktorn, people in Sweden should heed advice on COVID-19 from Folkhälsomyndigheten (The Public Health Agency of Sweden). This same information can also be found in English here.

“Endometriosis does not mean that you are at high risk of being severely ill from the coronavirus,” Dr. Melin said. “It is important to continue with your medication, check your prescriptions, and make sure they are valid. You can contact your doctor by phone or video call. Follow all advice about exercise (outside!) and [get] good sleep, [practice] mindfulness, [do] yoga, eat healthy, and take good care of yourself.”

Also, according to Endometriosis UK, those with endometriosis are not considered at high risk. Along with the general population, the site recommends that hand washing and practicing social distancing is the best defense against coronavirus for people with endometriosis.

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 potentially 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 US 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.

The European Lung Foundation has a list of tips for people with lung conditions including practicing social distancing, good hygiene, and maintaining regular treatments. They also encourage readers with respiratory health questions related to COVID-19 to email them at info@europeanlung.org.

Seeking Emergency Care While Flaring

Dr. Anna-Sofia Melin recommends avoiding emergency care because of COVID-19. Instead, try having phone contact with your doctor. However, if something seems strange or off, or if you’re having unexplainable pain, or fever, or if you suspect you are pregnant, then you must see a doctor.

If you need emergency care, Swedish hospitals currently have protocols in place to separate patients with suspected coronavirus from patients who are not showing coronavirus symptoms.

The best advice I can find on SÖS’s website, for now, is to contact the department that you usually seek help from for advice before visiting them if you are severely flaring.

If you have experienced something different or have advice on how to best manage this, please let us know. We are trying to find the best answers to these questions, and we need help!

Pauses in Surgical Procedures

The bad news is that The Swedish National Board of Health and Welfare (Socialstyrelsen) has decided to delay advanced endometriosis surgical procedures due to the coronavirus overwhelming the current healthcare system.

The good news is that they have licensed four hospitals (Akademiska sjukhuset i Uppsala, Sahlgrenska universitetssjukhuset, Skånes universitetssjukhus and Södersjukhuset) to perform these advanced surgeries. Once hospitals become less overwhelmed, they will announce a fifth hospital to receive licensure. Read more here.

IVF Treatments

IVF treatment centers like LivioNordic IVF, and Stockholm IVF remain open and continue to provide their services as normal. They only ask patients to cancel (with no additional fee) if the patient is showing mild-to-severe cold or flu-like symptoms, have had contact with someone with a confirmed case of coronavirus, or who have stayed at a hospital or care facility with confirmed cases of coronavirus.

There are also some restrictions on embryo return and insemination; however, fertility screening and general gynecology are progressing as normal. Any sperm partner must wait outside the clinic after sperm sampling is complete. Also, extended relatives and children are not allowed in the waiting room.

Livio regularly updates its Facebook Page with the most current news and any changes they make in regards to the coronavirus. Nordic IVF is also great about updating its Facebook pages (StockholmMalmöGöteborg) with news and changes. Stockholm IVF regularly updates its website’s homepage with the same information.

IVF treatments being conducted in hospitals may, however, experience delays and rescheduling due to care providers being needed to treat all seriously ill patients. Call your hospital’s respective reception or department to learn how your treatment is effected by the coronavirus.

Swedish Endometriosis Groups to Reach Out to For More Advice

In Sweden, there is a strong endometriosis community. These groups are especially useful during this time to view information about first-hand experiences and advice. Those with endometriosis and who would like to be part of a community within Sweden can consider the following options:

  • @endometriosdoktorn – This Instagram account, ran by gynecologist and endometriosis expert Dr. Anna-Sofia Melin, shares information and raises awareness about endometriosis. She has coronavirus-specific information posted to her account and encourages whoever has questions about managing their care to send her a message.

  • @endometriosen – This Instagram account is run by several women throughout Sweden who share first-hand accounts with endometriosis to raise awareness about it and provide support for others. They encourage whoever has questions about managing their care during this time to send them a message for advice and support.

  • Endometriosföreningen- This organization has been long established in Sweden and works to support endometriosis patients through providing information and influencing policies. We have spoken with them directly, and they encourage people with questions concerning their endometriosis care to contact them by email at info@endometriosforeningen.com or call them at 802413-0075.

Let us know if there are additional groups that have helped you during this time that we didn’t list. We want to ensure that all members of the endometriosis community in Sweden have access to this knowledge and receive the support they deserve during this time.

Digital Healthcare Providers

There are various apps in Sweden to utilize health services from home, including:

  • Mindoktor: Mindoktor is an app (for iOS only, but you can also access their services through their website) that connects you with a doctor, midwife, or psychologist over video chat to help you get care, advice, referrals, or prescriptions. They specifically state on their website that they are dedicated to providing the best and most accurate care for women’s gynecology and health issues. They employ a combination of doctors, midwives, and physiotherapists who work with each other to help you get in touch with a person with the right skills for your particular problem. It can be about contraception, pregnancy problems, PMS, menopausal disorders, and other things that affect the female genitals, reproductive organs, and sexuality. Read more here. Visits are free.

  • Kry: Kry is an app that allows you to speak with a general practitioner or psychologist through video chat. Simply download the app and login with your BankID. You are then prompted to describe your symptoms and answer some questions about them. They also give you the option to submit a picture of your symptoms. You can then specify if you would like to drop-in with a doctor at that time or book a later date. If deemed appropriate, the physician may write you a prescription, write referrals for further care, or connect you with a specialist. Meeting with a general practitioner is typically free while meeting with a psychologist is 100sek. Fees may vary, but they will inform you of fees before confirming your booking.

  • Alltid Öppet: Alltid Öppet is an app for both iOS and Android that can connect you to a doctor or a midwife (either from MVC, BVC, or Ungdomsmottagning) every day of the week from 7-21 for advice, referrals, and prescription renewals. Visits with midwives are free, although there may be a fee to meet with a doctor. All you need to do is download the app then access the services with your BankID. Opioids used for pain management cannot be renewed during these calls.

  • Mindler - Mindler is an app that connects you with either a psychologist or psychiatrist through video chat to help you manage your mental health. Set up is quite simple. All you have to do is download the app (offered in both iOS and Android), log in using your BankID, answer a few questions about yourself, then book a session. Within 24 hours, a licensed psychologist or psychiatrist will contact you via the app through a video session. You can seek out a mental health provider with qualifications that meet your needs. Not only do they help with depression, anxiety, and sleeping problems, they also offer help in managing IBS, pain, ADD/ADHD, Tinnitus, and quitting smoking. Sessions typically cost 100sek, but are free with a "frikort." Mindler also provides its services in over 20 different languages.

Prescription Delivery Services

If you are feeling ill or if you do not feel comfortable visiting pharmacies, there are several delivery options available, including:

Most of these pharmacies are currently offering free delivery.

Fitness and Nutrition Groups

There are several Facebook groups dedicated to helping people with endometriosis establish and maintain fitness and anti-inflammatory diet regimens. People who need support while trying to maintain their wellness routines during this disrupting 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 facilitates discussion about food and supplemental intervention for managing endometriosis. The private group is part of the Endometriosis Research Center’s global support and education network and encourages the exchange of experiences, ideas, information, and education related to nutritional modulators of symptoms. Members can 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, 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, the upper-back area, 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 rebuilding postnatal yoga videos. She seems genuinely aware of the pelvic region, and uses a gentle tone and flow while working out these areas.

COVID-19 May Delay, but Can’t Stop Endometriosis Treatment

The COVID-19 pandemic poses concerns for many of us, and it may even change how we care for ourselves and each other. While it can be overwhelming to not have answers and to stray from routine, it helps to equip ourselves with information to help overcome fear.

In Sweden, the health services are preparing to accommodate at a higher demand. Thankfully, we have access to abundant information resources, support groups, and digital healthcare providers that enable us to wade through this dynamic battle together.

For live updates on the virus in Sweden, check out SVT or TheLocal.se for news in English.