Getting diagnosed with endometriosis was a journey that took me nearly ten years. A decade of pain, confusion, and feeling dismissed before finally having an answer. If I had known then what I know now, I might have saved myself years of uncertainty. Here are ten things I wish knew before my endometriosis diagnosis—things I hope will help someone else feel seen, validated, and empowered.
1. What a Healthy Period Actually Looks Like
I grew up believing that excruciating cramps, vomiting, and days of debilitating fatigue were just part of being a woman. No one told me that a “normal” period should not leave me curled up in a ball, unable to function. Had I known what a healthy period looked like, I would have sought answers much sooner.
2. Painful Periods Are Not Normal
The idea “periods are supposed to hurt” is one of the biggest lies out there. Yes, mild discomfort is normal, but sharp, stabbing pain that interferes with daily life is not. If your period pain is stopping you from going to work, school, or doing basic activities, something is wrong—and it deserves to be taken seriously.
3. The Lack of Education About Menstrual Health is Dangerous
Growing up, I do not remember having open, honest conversations about menstruation beyond the basics. Schools barely scratched the surface, and society often treated it as something to whisper about. This lack of education meant I spent years thinking my symptoms were normal when they were anything but.
4. The Medical System Doesn’t Always Have the Answers
It took me ten years to get an endometriosis diagnosis because doctors would dismiss my pain. Offering birth control without any further testing. Medical gaslighting is real, and advocating for yourself—sometimes fiercely—is necessary to get proper care.
5. Pain Management is a Lifelong Journey
Living with chronic pain is tiresome. Pain management is trial and error. What works for one person may not work for another. Surgery, medication, holistic treatments—everyone’s journey is different, and it takes time to figure out what helps.
6. There’s Not Enough Support for Menstruating People
I wish I had known that I was not alone. I wish someone had told me that there were communities, support groups, and people who understood exactly what I was going through. Finding a community made a huge difference in my journey, and I encourage anyone struggling to seek out support. (You can join ours here).
7. Endometriosis is More Than Just a “Bad Period”
Many people—including doctors—still believe endometriosis is just about painful periods. But it affects so much more: digestion, energy levels, fertility, mental health. It is a full-body disease, and minimizing it to just a reproductive issue does a disservice to those living with it.
8. Conversations About Menstruation Shouldn’t Be Taboo
If we do not talk about periods, we allow misinformation and stigma to thrive. Open discussions about menstruation can help people recognize abnormal symptoms earlier and seek help sooner. It is time we normalize these conversations—not just among those who menstruate, but in society as a whole.
9. Self-Advocacy is Essential
No one knows your body better than you do. If a doctor dismisses your pain, seek a second (or third, or fourth) opinion. If a treatment is not working, explore other options. Learning to advocate for yourself in medical settings can be exhausting, but it is one of the most powerful tools you have.
10. Healing is More Than Just Physical
Endometriosis affects not just the body but also the mind and spirit. The emotional toll of being dismissed, misunderstood, and constantly battling pain is overwhelming. Prioritizing mental health—whether through therapy, journaling, or connecting with a support group—is just as important as managing physical symptoms.
Let’s Keep the Conversation Going
If you have been diagnosed with endometriosis (or are still searching for answers), know that you are not alone. I would love to hear your thoughts—what do you wish you had known before your diagnosis? Let’s share our experiences and support one another. Drop a comment below or join our community here.