I like to think I’m pretty tough. I played Division I lacrosse in college, I’ve run four marathons (and am currently training for my fifth), and I’ve even tackled an Ironman. So when I felt persistent pelvic pain, I figured my doctors would take me seriously when I told them something was wrong.

But that wasn’t the case.

Even with a history of gynecological issues (painful periods, a D&C at 16 to remove uterine polyps that were causing excessive bleeding, two ruptured cysts in my 20s, etc.), my symptoms were routinely shrugged off. Multiple doctors echoed the same sentiment: “You’re young, fit, and active—don’t worry, it’s nothing serious.”

So why did it feel serious to me? Some days, running was unbearable. Some nights, I barely slept. Most of the time, I just felt distracted, run down, and exhausted—plagued by a gut feeling that something wasn’t right, and equally by a voice in my head telling me to toughen up.

I was 36 years old when my pain was finally given a name: endometriosis. A chronic inflammatory disease in which tissue similar to the lining of the uterus grows outside of the uterus; a condition that can cause inflammation, internal scarring, organ damage, and infertility.

Why it’s so damn hard to diagnose endometriosis

My story is not rare. Roughly 1 in 10 women in the United States lives with endometriosis, according to the World Health Organization. Yet according to a September 2023 research review in Obstetrics & Gynecology, it can take up to 11 years on average for a person to receive a proper endometriosis diagnosis.

A lot of that delay has to do with the disease itself. “Endometriosis is a challenging condition to diagnose and care for because symptoms can vary so significantly between patients,” says OB/GYN Michael B. Baldonieri, MD, assistant professor at Case Western Reserve University School of Medicine.

Some people only have pain with their menstrual cycle, while others have pain all month long. Some have GI issues like bloating, constipation, or diarrhea, while others report pain during sex or exercise, extreme fatigue, and even shortness of breath. Some people with endometriosis experience no obvious symptoms at all and are only diagnosed after difficulties becoming pregnant.

What’s more, we currently lack noninvasive diagnostic tests for endometriosis, says Ann Peters, MD, a board-certified minimally invasive gynecologic surgeon at Mercy Medical Center in Baltimore, Maryland. A blood test or saliva swab won’t reveal it. It won’t be found on your pap smear, and pelvic exams and imaging tests are largely unhelpful.

“The extra-uterine implants are generally too small to be detected on an ultrasound or MRI until patients have developed more advanced and structurally aggressive cases,” Dr. Peters says. A definitive diagnosis can only be made by undergoing a laparoscopic surgery and tissue biopsy. (And obviously, going under the knife isn’t a casual, desirable, or affordable option for everyone.)

“Centuries of institutional and cultural bias against women has surely played a role in the forced normalization of endometriosis symptoms.” —Michael B. Baldonieri, MD, OB/GYN

Cultural barriers to diagnosis

But one of the biggest factors preventing women from receiving proper care goes beyond tricky symptoms or less-than-stellar testing methods. It stems from our collective attitude around pain—specifically, women’s reproductive pain.

“Centuries of institutional and cultural bias against women has surely played a role in the forced normalization of [endometriosis] symptoms,” Dr. Baldonieri says. “While I don’t believe that any clinician is intentionally ignoring symptoms, I do believe that it is easier to say conditions that we don’t fully understand are ‘normal,’ and that patients simply have to live with it.”

And to be clear: There is so much doctors don’t fully understand about this condition. “There are very few formal curricula to educate medical professionals about endometriosis, even within obstetrics and gynecology residency training programs,” says Mallory A. Stuparich, MD, FACOG, a minimally invasive gynecologic surgeon in Riverside, California. “Research into this condition is severely underfunded, so there is a lot we still don’t know or understand about it.”

Dr. Peters says it’s those gaps that can leave even the top endometriosis specialists torn when it comes to determining how to best take care of their patients.

If you take a 36-year-old with debilitating symptoms who has already tried a range of medications and lifestyle changes, confirming the diagnosis through surgery would be the easy next step. But is that the best option for a 15-year-old? Or would it be better to put the teenager on birth control—which can often successfully manage endometriosis symptoms—and only perform surgery when symptoms become untenable?

“With the lack of noninvasive diagnostic criteria, it’s impossible to know whether a severe case of endometriosis could have been avoided if we had intervened earlier,” Dr. Peters says. “This is the dilemma that I often debate, especially because I see some of the most severe cases of endometriosis.”

“Don’t be afraid to tell your provider: I believe I have endometriosis. These are the symptoms I experience. What should we do next?” —Michael B. Baldonieri, MD, OB/GYN

How to talk to your doctor about endometriosis

If you’re struggling with painful periods, don’t shrug it off. Experts believe that early, personalized treatment may help slow or halt the natural progression of endometriosis and reduce the long-term symptoms.

Here are five tips for advocating for yourself at the doctor and making the most of your visits in your quest to get an endometriosis diagnosis

1. Track your symptoms

This one is crucial. Open up the Notes app on your phone and start a page called “Symptoms,” or grab a small notebook to toss in your purse. Each day, jot down anything you feel.

“Coming to your first visit with a symptom diary—ideally over a three- to four-week period—can speed up the process to helping our patients feel better,” Dr. Baldonieri says.

Because there are a number of gynecological and gastrointestinal issues with similar symptoms, the more specific you are, the better.

“Any information you can provide on symptom type, severity, timing, triggering events, and alleviating factors will help us to diagnose the problem and develop an effective therapy plan. Especially useful is the timing of symptoms relative to the menstrual cycle,” Dr. Baldonieri says.

2. Ask questions

Office visits can be short, but it’s important to use your time with the doctor to get as much clarity as you need. Don’t understand a word they’re using? Ask. Curious why they’re prescribing a new birth control instead of the one you’ve been using? Ask. A doctor should never be bothered by you asking “why?” whenever they recommend a treatment or test, says Dr. Baldonieri.

“As a physician, it is part of my role to explain my reasoning and decision-making to patients,” he says. “When a patient engages in that process, it leads to a better physician-patient bond, and in my experience, improved outcomes and satisfaction for patients.”

3. Be assertive

Here’s something I wish I had heard sooner: No one, I repeat no one, knows your body better than you do. Listen to it; believe your symptoms.

“Don’t be afraid to tell your provider: I believe I have endometriosis. These are the symptoms I experience. What should we do next?” Dr. Baldonieri says.

If you feel your doctor isn’t taking your symptoms seriously or shrugging off your suspicions, try this script: “I get the impression that you are not taking my symptoms seriously. How can we work together to make a plan that we are both satisfied with?” An attentive doctor will respond with renewed energy and effort. If they don’t, it’s time to find a new doctor.

4. Seek out a specialist

Throughout my 20s, I dutifully tracked my symptoms. But when I tried to talk to my doctor about them, she’d tell me: “You’re fine. It’s nothing serious.” She was a well-respected gynecologist, so I believed her. It took me years to finally decide to switch doctors—and in hindsight, it’s something I wish I’d done a lot sooner.

“Concerns regarding pelvic pain or painful periods shouldn’t be dismissed or downplayed,” Dr. Stuparich says. “Patients receive the best care for endometriosis when they’re seen by an endometriosis expert with a practice focused on complex endometriosis care.”

Start by searching for endometriosis surgeons (also referred to as minimally invasive gynecologic surgeons) in your area. “These doctors traditionally have completed a two-year fellowship beyond traditional OB/GYN training,” Dr. Stuparich says.

5. Stay flexible

Hormonal medications, pain medications, injections, meditation, dietary changes, pelvic floor physical therapy, talk therapy, surgery—while endometriosis is not a curable condition, there are a wide range of tools that can be used to help ease your symptoms. So if one approach isn’t working, ask your doctor about other options.

“Pain is an extremely complex process and it can often take many iterations to find the combination of approaches that works best for an individual patient,” Dr. Baldonieri says. “We may not be able to 100 percent alleviate pelvic pain with current therapies and knowledge, but rest assured that research and understanding of these symptoms is progressing and new approaches are being developed every year.”

The takeaway

Getting an endometriosis diagnosis can be challenging because of a lack of understanding in the medical community and ingrained cultural biases around the menstrual cycle and women’s health in general. But there are ways to advocate for yourself when talking to your doctor about endometriosis, which can help speed up the diagnostic process and get you into treatment for the condition sooner.

And take heart: Although this condition has long been ignored, there is hope. “Women were not included in clinical research trials until very recently, so there is not enough data published about endometriosis,” says board-certified OB/GYN Somi Javaid, MD, chief medical officer at HerMD. “But there are now excellent research centers looking at this condition and publishing data, which will change the paradigm for patients and providers alike.”

So, here’s hoping our daughters and granddaughters won’t face the same barriers we do today.

—reviewed by Andrea Braden, MD, OB/GYN