If you have endometriosis (or suspect you might) you probably know that getting a diagnosis can feel like running a marathon with no finish line. On average, it takes seven to ten years for someone to receive an official endometriosis diagnosis. And while the pain, inflammation, and life-disrupting symptoms are very real, many people with endo are dismissed, misdiagnosed, or told that their pain is just “part of being a woman.”
So, why does it take so long to get diagnosed? And what can we do about it? Let’s break it down.
The Gender Pain Gap: It’s Not in Your Head
The delay in diagnosing endometriosis is part of a bigger issue: the gender pain gap. Research shows that women’s pain is more likely to be underestimated, misdiagnosed, or ignored compared to men’s. This means that when someone with endo seeks medical help, they may be dismissed with a vague explanation like “bad periods” or “stress.”
Historically, women’s health has been underfunded and under-researched, leading to a serious lack of understanding and medical training around conditions like endometriosis. For decades, the default assumption in medicine has been that men’s bodies are the standard—leaving women’s unique experiences out of the conversation.
Symptoms That Get Overlooked
One of the biggest roadblocks to early diagnosis is the wide range of endometriosis symptoms. While chronic pelvic pain and painful periods are well-known signs, endo can also cause:
- Pain during sex
- Bloating (often called “endo belly”)
- Fatigue
- Pain with bowel movements or urination
- Digestive issues (often misdiagnosed as IBS)
- Infertility
Because these symptoms can overlap with other conditions, many people go years being treated for everything except endometriosis. Some are even told they have anxiety or are simply “too sensitive.”
The Role of Racial Bias in Diagnosis Delays
It’s important to acknowledge that not everyone experiences these delays equally. Research suggests that Black, Indigenous, and People of Color (BIPOC) face even greater barriers to diagnosis and treatment. Studies have shown that Black women are less likely to be diagnosed with endometriosis compared to white women, despite experiencing similar symptoms. This is largely due to systemic biases in healthcare that downplay pain in racialized communities.
What Needs to Change?
While awareness around endometriosis is improving, there’s still a long way to go. Here’s what we're looking forward to and what we need to see change:
- More education for doctors: Medical professionals getting better training in recognizing and diagnosing endometriosis, so fewer people slip through the cracks.
- Better diagnostic tools: Right now, laparoscopic surgery is the only definitive way to diagnose endometriosis, but research is underway to develop less invasive options.
- More research funding: Endometriosis affects 1 in 10 people with uteruses, yet it remains underfunded compared to other conditions with similar prevalence.
- Self-advocacy: While the burden shouldn’t be on patients to push for answers, being informed and persistent can help. Tracking your symptoms, bringing research to your doctor, and seeking second opinions can make a difference.
Bottom Line: Your Pain Is Real
If you’re struggling to get answers, you’re not alone. The delay in diagnosing endometriosis isn’t just frustrating, it’s a serious health issue that needs attention. The more we talk about it, the more we push for change in the medical system. If you suspect you have endometriosis, don’t settle for being dismissed. Keep advocating for yourself, and know that your pain deserves to be taken seriously.