It is a phantom. It's a disease that hides in plain sight, masquerading as "just a bad period" or a "low pain tolerance." But for millions of people, it is a life-altering reality. When we talk about what percentage of women have endometriosis, the standard figure you’ll hear from the World Health Organization (WHO) and the Mayo Clinic is roughly 10%.
That’s one in ten.
Think about your office, your yoga class, or your family tree. If there are thirty women in a room, three of them are likely dealing with tissue similar to the lining of the uterus growing where it absolutely shouldn't be—on the ovaries, the fallopian tubes, or even the bowels. But here is the kicker: that 10% is almost certainly an underestimate. Because endometriosis requires laparoscopic surgery for a definitive diagnosis, many people live for decades without ever being counted in the official statistics.
The Gap Between Reality and Data
Why is it so hard to pin down exactly what percentage of women have endometriosis? Honestly, the medical system has a bit of a "gender pain gap" problem. Studies show that it takes an average of seven to ten years from the first onset of symptoms for a person to receive a formal diagnosis. If you aren't diagnosed, you aren't a statistic.
Current research, including data published in The Lancet, suggests that if we accounted for asymptomatic cases or those misdiagnosed as Irritable Bowel Syndrome (IBS), the number could be significantly higher. Some specialists, like those at the Endometriosis Foundation of America, argue that in certain populations—like those seeking help for infertility—the prevalence jumps to nearly 30% or 50%. It's not just a "period problem." It's a systemic inflammatory condition.
The symptoms vary wildly. Some people have stage IV endometriosis (the most severe) and feel almost nothing. Others have stage I (minimal) and are curled in a fetal position every month, unable to breathe through the pain. This discrepancy makes screening a nightmare.
Why the 10% Figure is Just the Tip of the Iceberg
We have to look at who is actually getting diagnosed. If you don't have health insurance, or if your doctor tells you that "pain is just part of being a woman," you’re never going to show up in a study about what percentage of women have endometriosis.
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Research from the Journal of Women's Health highlights that Black and Hispanic women are often diagnosed later and are less likely to be referred to specialists than their white counterparts. This isn't because they have the disease less often—it's because of systemic barriers to care. When the data is skewed by who can afford a specialist, the "official" percentage becomes a reflection of privilege rather than biology.
Beyond the Uterus: Where the Disease Actually Lives
Endometriosis is weird. It’s persistent. While it’s mostly found in the pelvic cavity, "extrapelvic" endometriosis is a real, albeit rarer, phenomenon. It has been found in the lungs, the skin, and even the brain.
- Ovarian Endometriomas: Often called "chocolate cysts" because they're filled with old, dark blood.
- Superficial Peritoneal Endometriosis: Thin films of tissue on the lining of the abdomen.
- Deep Infiltrating Endometriosis (DIE): This is the heavy hitter. It grows deep into organs like the bladder or rectum.
The pain isn't just during menstruation. It can happen during ovulation, during sex (dyspareunia), or while going to the bathroom. For some, it’s a constant, dull ache that never really leaves, like a background hum of electricity that occasionally surges into a blackout.
The Infertility Connection
A massive chunk of the "10%" figure comes from the fertility clinic pipeline. Often, a woman doesn't know she has it until she tries to get pregnant and fails. Approximately 30% to 50% of women with infertility are found to have endometriosis.
It affects fertility in a few ways. It can cause physical blockages, like adhesions that "glue" organs together. It can also create an inflammatory environment that affects egg quality or prevents an embryo from implanting. It's a heavy burden to carry.
Misconceptions That Keep the Numbers Low
We need to kill the myth that pregnancy or a hysterectomy "cures" endometriosis. It doesn't. Pregnancy might suppress the symptoms because of the hormonal shift, but the lesions don't just vanish. A hysterectomy only works if all the endometriosis lesions outside the uterus are also removed. If a surgeon leaves behind a lesion on the bowel, you’ll still have pain, even without a uterus.
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Another big one: "You're too young to have endometriosis."
Wrong.
The American College of Obstetricians and Gynecologists (ACOG) has made it clear that even teenagers can have it. In fact, many adults who are finally diagnosed look back and realize their symptoms started with their very first period.
The Cost of the "Wait and See" Approach
Society pays a high price for ignoring the true percentage of women who have endometriosis. We’re talking about billions of dollars in lost productivity and healthcare costs annually. But the human cost is higher. It’s the missed birthdays, the abandoned careers, and the mental health toll of being told your pain is "all in your head."
Dr. Linda Griffith, a biological engineer at MIT who also has endometriosis, has been a vocal advocate for more funding. She points out that for a disease that affects as many people as diabetes, the research funding is a literal fraction of the size. We are basically flying blind because we haven't invested in the non-invasive diagnostic tools that would tell us the real numbers.
Diagnosis and Treatment Options
If you suspect you're part of that 10% (or higher), don't settle for a doctor who brushes you off.
- Imaging: While a standard ultrasound often misses endometriosis, a specialized "deep endometriosis" ultrasound or an MRI interpreted by a radiologist who knows what to look for can be helpful.
- Hormonal Suppression: Birth control pills, IUDs, or GnRH agonists (like Orilissa or Lupron) can manage symptoms by stopping the menstrual cycle, but they don't get rid of the disease.
- Excision Surgery: This is the gold standard. A specialist cuts the disease out. Note the word "excision"—not "ablation" (which just burns the surface). Burning it is like trying to kill a weed by singeing the leaves; you have to get the roots.
Navigating the Healthcare System
You have to be your own advocate. It’s exhausting. It’s unfair. But until the medical community catches up to the reality of what percentage of women have endometriosis, it's the only way.
Keep a "pain diary." Record how your pain correlates with your cycle, your diet, and your activity level. When you go to a doctor, don't just say "it hurts." Say, "On a scale of one to ten, it’s an eight, and it prevents me from going to work three days a month." Use data to fight for your diagnosis.
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Real Talk: Life with the Disease
It’s not just a physical struggle. It’s a lonely one. Because it’s an "invisible illness," people might think you’re flaking on plans or being dramatic. But the community is growing. Online spaces and advocacy groups are helping people realize they aren't alone. Whether the number is 10% or 20%, that represents millions of individuals who deserve better answers.
Actionable Steps for Management and Advocacy
If you’re struggling with symptoms or have just been diagnosed, here is how to actually move forward.
Find an Excision Specialist.
Most general OB-GYNs are great at delivering babies but may not be trained in the complex surgery required for endometriosis. Look for a surgeon who specializes specifically in minimally invasive gynecologic surgery (MIGS) and has a high volume of endometriosis cases.
Assemble Your "Team."
Endometriosis is a multi-system disease. You might need a pelvic floor physical therapist to help with muscle tension, a nutritionist to help manage "endo belly" (bloating), and a mental health professional who understands chronic pain.
Demand Specific Imaging.
If your doctor says "the ultrasound is clear," ask them if they were looking for deep infiltrating endometriosis or just checking for large cysts. An "all-clear" ultrasound does not rule out endometriosis.
Focus on Anti-Inflammatory Habits.
While diet isn't a cure, many find relief by reducing triggers. This isn't about being perfect; it's about figuring out what makes your specific body feel less like it's on fire. For some, that's cutting out gluten or dairy; for others, it's just making sure they get enough magnesium and sleep.
Document Everything.
Save your surgical reports. Keep your imaging files. In the world of chronic illness, your medical history is your most powerful tool. If you move or switch doctors, you shouldn't have to start from zero.
The reality of what percentage of women have endometriosis is that it is common, it is underfunded, and it is often ignored. But the more we talk about it, the harder it becomes to overlook. You aren't "crazy," and you certainly aren't alone.