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The standard of care for endometriosis is disgraceful, especially for a disease that affects 200 million people worldwide. More people suffer from endometriosis than Alzheimer’s, Lupus, Multiple Sclerosis, Inflammatory Bowel Disease, Rheumatoid Arthritis, and Parkinson’s Disease combined – yet most of the general population has never heard of endometriosis. We need a cure. We need recognition. We need to go to the doctor and be taken seriously when we say we are terrified to get our periods because of the crushing pain that it brings. We need funding for endometriosis research, and research that isn’t focused on proving the outdated theory of retrograde menstruation. We need education in schools and even among doctors that period pain is not normal, painful sex is not normal, and painful bowel movements are not normal. Gastrointestinal doctors should be trained further investigate into symptoms that appear to be IBS in people assigned female at birth, especially if symptoms flare around the menstrual cycle. Emergency room doctors should understand that excruciating pelvic pain, especially on one’s period, can be caused by endometriosis and inform the patient that it could be a reason for their pain.
It shouldn’t take 10+ years to be diagnosed with such a common disease, and once diagnosed, we should have access to excision to remove the disease from our bodies, instead of being offered subpar treatments based on misinformation. Some doctors even refuse to treat people with endometriosis who are not experiencing infertility or trying to get pregnant, completely disregarding that symptoms such as pain, fatigue, and digestive problems severely diminish our quality of life.
Not only do endometriosis patients grapple with chronic and often debilitating pain that ravages our lives, often affecting our relationships, our careers, and our mental well-being, but we face dismissal and lack of education from the very medical professionals who we are supposed to turn to for help. The psychological impact on us is double. We are weighed down by the debilitating symptoms and lack of treatment, and weighed down again by being told that it isn’t real and that we should see a psychologist for what these medical professionals perceive as “anxiety.”
Many of us with endometriosis begin having symptoms from 9, 10, 12 years old. It’s heartbreaking to me that from such a young age, we go through so many trials and tribulations because we are fighting not only against endometriosis, but against a system of misinformation, dismissive doctors, lack of access to expert care, all while battling the pain, fatigue, nausea, doubt, and more.
The endometriosis community is an incredible group of people, and we will keep advocating so that future generations don’t have to suffer as we have.
For more info
- Tea Talk: Endometriosis Advocacy with Heather Guidone, BCPA – Such a great YouTube video from Heather from the Center for Endometriosis.
- Advocates Speak Out on Endometriosis – A panel I participated on from the Endometriosis Summit
- Learning to Advocate for Your Health with Shantana Hazel of Sister Girl Foundation – Video from the Endometriosis Summit.
- Nurses Know Endo – Initiative by EndoWhat to send an Educational Toolkit to school nurses. “School nurses are usually the first to know when teenagers have endometriosis symptoms. To properly educate them would make an enormous impact in decreasing the delay in diagnosis.”
- Bowel Endo and a Chat on Mental Health – Link to a FB live I did with Dr. Vimee Bindra, from Hyderabad India (endometriosis excision surgeon), and Dr. Shilpa Rao, from Pune, India. I spoke about getting my diagnosis, how I’m searching for peace, and how endometriosis can impact mental health. Dr Bindra gave an informative presentation on bowel endometriosis.
Related Podcast Episodes
- Ep 2 – From Dismissal to Diagnosis
- Ep 4 – What Does Endometriosis Pain Feel Like?
- Ep 6 – What’s It Like to Live with Endometriosis?
- Ep 61 – Is Finding Peace with Endometriosis Possible?
- Ep 97 – Endo Standard of Care with Soha Wahb of Lebanon
- Ep 99 – Endo Standard of Care with Olivia Nwankudu of Nigeria
- Ep 103 – Change the Guidelines – A Chat with Invisible Iconic of Australia
- Ep 110 – Endo Standard of Care with Arti Shah of Kenya