Welcome to In Sixteen Years

Para leerlo en español, clic aquí.

I’m Amy, and I have endometriosis. For 16 years, endometriosis ravaged my life yet no medical professional could figure out my symptoms were endometriosis. My endometriosis advocacy was born out of the rage and grief I felt about what I went through and how common this same situation is worldwide.

The standard of care for endometriosis is disgraceful

Especially for a disease that affects 200 million people worldwide. 

• 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• We need funding for endometriosis research – research that isn’t focused on proving the outdated theory of retrograde menstruation.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.
• We need all doctors to have training to recognize the common symptoms of endometriosis. Gastrointestinal doctors should be trained further investigate into digestive symptoms that appear to be IBS in women and people assigned female at birth, especially if symptoms flare around the menstrual cycle. Emergency room doctors should understand that lung collapses, especially on one’s period, can be caused by endometriosis. Primary care physicians should be aware that fatigue is a common symptom of endometriosis.

It shouldn’t take 10+ years to be diagnosed with such a common disease

And once diagnosed, we deserve to have access to multidisciplinary treatment that takes a full body approach that includes diet and lifestyle, mental health, hormonal health, intestinal health, excision surgery, and more. Instead of what we have now: pervasive myths, uninformed doctors, lack of access to expert care, and lack of informed consent.

Not only do many people with endometriosis 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 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, 12, 16 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 and dismissal, all while battling the pain, fatigue, nausea, 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.

About my advocacy

My name is Amy, and I hope my content can help inspire you, educate you, empower you, validate you, and help you feel supported.

Explore the menu to find:

• Educational information on endometriosis.
• My podcast In Sixteen Years of Endometriosis 
  • It over 150 episodes: laugh, cry, and shout with me and my guests about endometriosis.
• My education book Endometriosis: Putting the Pieces Together for a Better Life
  • Evidence-based information on endometriosis featuring doctors’ and patients’ perspectives.
• My book Finding Peace with a Devastating Disease
  • It’s an exploration of finding peace with this illness and includes self-guided journaling prompts.
• Spanish translations of almost all pages on my website.
  • Para ver esta página en español, clic aquí.
• A second podcast I host in Spanish on endometriosis called Endometriosis en lo profundo.

Evidenced-based information

While I strive to share evidenced-based information on endometriosis, this doesn’t always mean that my information is accurate or complete. Always make sure to do additional research and discuss your personal case with your doctor. Endometriosis is an extremely nuanced disease that we just don’t know enough about. Many aspects of it are debated among the endometriosis community and not all endometriosis specialists or advocates agree. As I learn more, as new research on endometriosis emerges, and as my understanding of endometriosis evolves as I continue to speak to patients and medical experts, I’ve been updating my website to reflect this.

If you believe you’ve found misinformation on any of my pages, please contact me!

My content is educational information only and not medical or mental health advice

Remember, the information on my website, podcast, Instagram, and any other ways I communicate and/or produce content is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan for endometriosis or any other health problems. I am not a medical professional nor an expert in endometriosis or any other topic I talk about in my content. See my full disclaimer here.

Important note on being inclusive

Endometriosis affects people of all genders and sexes. I welcome all people of all gender identities and expressions here. Including all people with endometriosis in conversations about the disease is vital because it’s important to have a safe and inclusive space when talking about endometriosis, which can help people feel seen as well as access medical care.

Connect with me

• Follow me on Instagram! I post several times a week about endometriosis @in16yearsofendo
• See how to contact me here.