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EndoFound's Virtual Community

EndoFound's Virtual Community

Dear Endo Family,

We’re here for you, and we’re listening. We’re hoping to create ways for us to connect as a community in this incredibly difficult time. 

We’re working on producing a video series featuring doctors, mental health professionals, nutritionists, patients, and patient advocates who will speak on struggling with endometriosis during this difficult time of COVID-19. We’ll also be sending out newsletters with health, self-care, exercise, and anxiety-management tips to help endo patients. In addition, we will be featuring stories from endo patients about how you’ve been coping during this time. There has never been a more important time to come together (virtually!) with your endo community and your support system, especially during Endo Awareness Month. 

The video series will address the specific concerns endo patients may have in this uncertain time. Many hospitals across the US have cancelled elective surgeries to ensure adequate capacity for COVID-19 patients. While this is a necessary action, it poses new questions for the endo community. Should I stay away from emergency rooms? Can I not see my doctor while practicing social distancing? How should I cope? What home exercises will help manage my pain? 

EndoFound co-founder and surgeon Dr. Tamer Seckin advises that endo patients try to avoid the emergency room as much as possible during the COVID-19 crisis. However, based on your symptoms, the nature of your pain may be urgent. Always call your doctor first. If you have a fever and shortness of breath, go to the ER. If your stomach is distended and you cannot pass gas, and your pain is progressively and unbearably increasing, go to the ER. If you have severe abdominal pain or severe flank pain; are severely constipated; if you miss your period and have a sudden sharp pain on one side, go to the ER. 

To cope with pain, Dr. Seckin suggests using a non-opioid pain medication and taking a warm shower or bath and applying heat via a heating pad. He urges patients to avoid taking opioids and narcotics. 

We will host a full information video session with Dr. Seckin to answer COVID-19 and endo-related questions this week. Please stay tuned for more answers, as well as information and tips from other doctors.

Endometriosis is already an extremely isolating disease, so we hope to be of some comfort and community in this unprecedented moment. We believe that the endo community will remain resilient, strong, healthy, and safe together and as always, we are here for you.

P.S. EndoFound is continuing to accept submissions for Endo Stories. We need your voices now more than ever. You can share your story here.

Be well, 

Margaret Cianci
Executive Director