Endometriosis Twitter Chat Everyday Health MenuNewslettersSearch Endometriosis Everyday Health s Endometriosis Twitter Chat Here s What You Missed Advocates and experts took to Twitter to discuss challenges, tips, awareness, and more in honor of Endometriosis Awareness Month. By Brianna MajsiakReviewed: April 13, 2021Fact-CheckedFrom the impact of the pandemic on care to the role of celebrities in raising awareness, here's what experts and advocates had to say.iStock; Everyday HealthEndometriosis is one of the most common gynecological diseases, but it can take up to 10 years for the average patient to receive a proper diagnosis. Self-described “endo warriors” are working to change that through advocacy and story sharing on social media. To mark Endometriosis Awareness Month, Everyday Health called upon the endo community to use the Twitter hashtag #EverydayEndoChat to create a safe space for discussing all things endo. Some of the topics covered included mental health, the role of celebrities in raising awareness, tips for finding support, visibility in the workplace, and the impact of the pandemic. The chat featured:Endometriosis Foundation of America A nonprofit organization that raises awareness, advocates for people with endo, and funds endometriosis research (Follow @EndoFound)Tamer Seckin, MD A board-certified advanced gynecologic surgeon with expertise in endometriosis and complex pelvic pain disorders; cofounder of EndoFound (Follow @DrSeckin)April-Christina A beauty blogger and endometriosis advocate (Follow @aprilchristina_)Aubrey Anne An endometriosis patient and chronic-pain warrior (Follow @toomuchaubrey)Sydney An advocate and blogger living with deep-infiltrating endometriosis and pelvic floor dysfunction (Follow @writingbysydney)Jenn Schropp A patient and advocate living with stage 4 endometriosis (Follow @Endo_Jenn)Kate Womersley An endometriosis patient and advocate (Follow @BendoWithEndo)Maya Chendke A healthcare advocate and meditation teacher who works with fellow endo patients (Follow @mayachendke)Katie Awdas A self-described endo and infertility warrior (Follow @katieatheart222) Read on for highlights from the #EverydayEndoChat. RELATED: The Top Endometriosis Instagrammers — and Why They’re Important Everyday Health: First things first: How was 2020 for you? What were the major challenges you faced due to the pandemic? How was your endo treatment and management affected? April-Christina: The pandemic was a major adjustment to life as I know it — just trying to maintain a sense of normalcy around me. I tried to lower my stressors so I didn’t get an endo flare. Aubrey Anne: I was thrilled with all the accommodations made for doctor appointments, but at the same time I avoided the actual doctor’s office for fear of getting even more sick! I kind of ended up putting my endo treatment on hold for another year. Katie Awdas: 2020 was awful. I had my ninth surgery (sixth laparoscopy) and they couldn't fix what they found for multiple reasons, including not having [a] colorectal [doctor] present. In the UK the impact on the NHS was awful, contacting specialists was difficult, and I was really ill. #EverydayEndoChat A1: "From postponed surgeries to a shift to telemedicine, the pandemic has been difficult for #endo patients. In the first 3-4 months, our practice had to postpone surgery as endometriosis surgery is technically elective surgery, which NY paused" @DrSeckin- Endometriosis Foundation of America (EndoFound) (@Endofound) March 28, 2021 Jenn Schropp: All my doctors still allowed in-person appointments, so that was very nice. They just had extra precautions and masks required. I like the mask situation, so I'm not complaining about that. However, I love streaming concerts! Katie Awdas: Working from home has been a revelation for me. I'm a teacher and I've transitioned to homeschooling via Zoom as well as some tutoring. It has meant I'm able to use my skills in a way that works well for my body. It's something I can do long-term. April-Christina: Virtual doctor visits allowed me to be able to start my IVF cycle sooner, which I was happy about. EndoFound: Telemedicine can never be a replacement for physical examination. It’s limited, and of course, for a proper #endometriosis consultation, in-person is always best. — Dr. Seckin 2020 was a funny year, it allowed me to work from home which with painful endo was good, but the surgery I had wasn't done by the specialist person I'd hoped so I'm back in surgery again in the next few months. Pain management has been so hard this last year! #EverydayEndoChat- RoundTheBendoWithEndo (@BendoWithEndo) March 28, 2021 RELATED: Managing Endometriosis During the Coronavirus Crisis EH: Speaking of working from home, how do you deal with endo in the workplace? How do you manage taking days off or dealing with bad pain days? Do you talk to your coworkers or boss about endo? Sydney: Working remotely is a major silver lining, and I hope it will stay after the pandemic is over. For those of us with #chronicillness and #chronicpain, working remotely has been on our wish list forever. Also life has slowed down a lot, and I love living at a slower pace. EndoFound: One of the reasons #endometriosis continues to be improperly diagnosed and mistreated is because of the taboo surrounding menstruation. Workplaces rarely understand just how much of a toll endo takes on patients. I’m very much in favor of menstrual days off — it should be mandatory to give employees days off during a person’s menstrual cycle. Menstrual rights are human rights. — Dr. Seckin #EverydayEndoChat Q3 my managers are very understanding which I’m happy about. Since my last excision surgery 9 years ago, I’ve had FMLA & it’s really helped me a lot in days I don’t feel well or need to leave early.- April-Christina (@aprilchristina_) March 28, 2021 RELATED: How a Delayed Endometriosis Diagnosis Helped One Woman Find Her Voice EH: Let’s talk mental health. What did you do to cope with stress this past year? Did you start any new practices? Anything you would recommend to others? EndoFound: Endometriosis affects so many aspects of a patient’s life, and it is critical that patients prioritize their mental health. #Endo patients experience serious anxiety with respect to their upcoming period and the pain that it can cause. — Dr. Seckin Jenn Schropp: Meditation and exercise is huge in keeping me sane in a very insane world. I started journaling a lot more, which has been very helpful. Of course the nerd in me uses reading to just escape reality a bit. Sydney: I prioritized my needs and health over what people expected from me. I learned to say no. I also took a long hiatus (still ongoing) from #endometriosis blogging. My life has been overwhelmed by the disease — I took a step back to focus on healing. A4 I think the MOST amazing thing this year has been that I CAN SAY NO when people ask me to do things/go places, and I'm not treated like it's a personal insult to the person asking. This helps my MH so much! #EverydayEndoChat- Aubrey Anne (@toomuchaubrey) March 28, 2021 EH: When it comes to increasing endo awareness, we’ve recently seen celebrities like Chrissy Teigen, Halsey, and Amy Schumer discuss their diagnoses. Do you feel this is helpful or harmful to the cause? Is there a particular endo sister you look up to? EndoFound: It’s critical that #endometriosis is diagnosed at an early age with early intervention. Education about the disease must begin early, before a person has their period. #EndoFound has a robust education program, which we’re taking digital this year. But [celebrity voices are] also [important] to combat the stigma associated with the disease. The info they share must be correct, so they don’t mislead the public. @PadmaLakshmi came forward and discussed endo more than 10 years ago, when almost no one spoke of it in public. — Dr. Seckin Aubrey Anne: I go back and forth on this! I feel like it's overall a good thing to have it in the media. However, I don't think the "I don't let my disease slow me down" dialogue is very helpful. RELATED: Celebrities Living With Endometriosis EH: What do you wish people who do not have endo would understand about your experience? Are there any specific changes you’d like to see in language around endo? April-Christina: Just because you can’t see my condition, does not mean that it doesn’t exist. Just more understanding, just as you’d like for someone to give that to you in any situation that you deal with.EndoFound: Not everyone who has #endometriosis identifies as a woman. We have to start saying “people with endo” in order to effectively support the entire endometriosis community. — Dr. Seckin A7. I'm not faking being sick. I am faking being well. #Endometriosis is NOT just a bad period. When I was diagnosed someone said to me "oh you have #endo, thats not bad" All I can say to that person is "Walk 1 day in my shoes then try to say that. Good luck." #EverydayEndoChat- Jenn Schropp (@Endo_Jenn) March 28, 2021 EH: Our final question is always the same: What resources do you turn to to help manage your health? Whether it’s a blogger, an organization, an app, or a product, share what helps you mentally and physically! April-Christina: As far as resources, @The_ENDOBlack has been it for me. Being African American, I really needed others that look like me with endometriosis so I didn’t feel alone. Katie Awdas: Twitter is my safe space to moan when I'm feeling bad. I make no apologies for it; I feel supported here. In the UK we have a company called @BeYouPeriod who make amazing nonmedicinal patches. They are amazing and I highly recommend them! Sydney: The Twitter Endo community is amazing and so supportive. Maya Chendke: I would love to offer myself up to help anyone interested in #meditation. Best bang for the buck I got for #endo symptom management. Stress hormones are the devil — [they] trigger flares and pain. I teach others just like me. A8 cont: "When treating the disease, the most important thing is to seek a competent, compassionate surgeon who has an understanding of teamwork, can work w/ multiple organs, and is, above all, an excellent and precise surgeon." @DrSeckin #EverydayEndoChat- Endometriosis Foundation of America (EndoFound) (@Endofound) March 28, 2021RELATED: Endometriosis Resources NEWSLETTERS Sign up for our Women' s Health Newsletter SubscribeBy subscribing you agree to the Terms of Use and Privacy Policy. 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