Could You Have Endometriosis? How to Find Out & What to Do

“Really bad periods run in our family, honey. I know, it sucks.” 

These words were the mantra of my teenage years, often repeated by my mom. As far as my family knew, awful menstrual cycles were a normal inheritance, like our strawberry blond hair and bright blue eyes. 

So, when I developed horrendous gastrointestinal symptoms in my teens, it never occurred to me that they could be related to my period. I saw GI specialists, naturopaths, and dieticians who diagnosed me with IBS-D, allergies, food intolerances, and chronic stress. They prescribed medications, supplements, diets, and meditation – yes meditation – but nothing resolved my symptoms. 

It wasn’t until one of those naturopaths suggested that I go off hormonal birth control that I started to suspect my “awful periods” and GI symptoms were linked.

Life off of hormonal birth control was a horror show. Constant nausea made eating a struggle. Every time I did eat, I ended up in the bathroom within 20 minutes and endured hours of gas pain. I had my period, continuously, for 2 months straight. The nearly constant cramps were sometimes so intense I actually had to lie down on the floor, and I bled so heavily I developed anemia. 

During a seemingly endless night of pain-induced insomnia, I Googled “horrible GI symptoms and bad periods.” Many of the search results were about endometriosis. 

More than three years later, I had my first excision surgery, and finally received an official diagnosis – stage 3 endometriosis. Eight years and two more surgeries later, I don’t know if I’ll ever stop wondering if the endometriosis would have been that advanced if I’d gotten a diagnosis in my teens or early twenties and how my life could have been different if I’d just known that my family’s “awful periods” weren’t normal. 

Unfortunately, my long and winding path to a diagnosis isn’t uncommon. According to the American Medical Association, it takes women (most of the research isn’t trans-inclusive) between 4 and 11 years to get diagnosed with endometriosis. The reasons behind these egregious delays are plentiful and span every level of our healthcare system. 

For many people, the problem starts with a lack of accurate education about menstrual cycles. “Bad periods” are normalized through bad sex education, pop culture, and, in many cases (like mine), our own families. They’re so normalized that a review of 17 studies on women’s experiences with endometriosis found that women wait between one and four years to bring up their symptoms with a doctor. One of the primary reasons given was a lack of understanding about abnormal periods.

Just so we’re clear, the American College of Obstetricians & Gynecologists (ACOG) defines a normal period as: 

• A cycle length (the number of days between the first day of your period and the first day of your next period) between 21 and 45 days

• Menstruation (aka your period) that occurs for 2 and 7 days. 

• Bleeding that can be managed by changing your tampon or pad every 2 hours. 

So, if you get your period more frequently than every 21 days, and/or it lasts more than 7 days, and/or you’re bleeding through a pad or tampon in less than 2 hours, your period is technically abnormal, and it’s important to talk to your gynecologist so they can figure out why. 

Inadequate education on abnormal menstrual cycles also means that many people often don’t know that their menstrual cycles can cause or contribute to a plethora of symptoms in nearly every system of the body. 

Dr. Rayan Elkattah, a gynecological surgeon who specializes in endometriosis, told me, “Endometriosis can affect multiple body systems beyond the reproductive tract, creating a systemic inflammatory condition with widespread manifestations. While primarily involving pelvic structures, the disease extends to cardiovascular, neurological, metabolic, immune, gastrointestinal, urinary, and musculoskeletal systems.”

Many people, like me, spend years trying to get a diagnosis that explains their widespread, multi-system symptoms before they, or their doctors, even think to talk about their menstrual cycles. 

However, Dr. Heather Jeffcoat, PT, DPT Pelvic Health Physical Therapist and owner at Femina Physical Therapy in Los Angeles, CA, told me that “endometriosis should be on your list of diagnoses to consider” for anyone experiencing otherwise unexplained chronic GI, urinary, and pelvic pain conditions. 

Unfortunately, getting officially diagnosed with endometriosis is still a major struggle. 

Dr. Elkattah explained, “Despite extensive research evaluating 122 different blood biomarkers, none have demonstrated sufficient accuracy for diagnosing endometriosis… For superficial peritoneal endometriosis, which is the most common form of endometriosis, most ultrasounds and MRIs are not helpful nor diagnostic. This means that a negative imaging study does not exclude endometriosis.”

You might be thinking, “Wait, didn’t I read some article or social media post or something about a new blood test for endometriosis?” And this is where, if you’ll indulge us for a moment, we’ll go on a little rant about health and science reporting. The articles and social media posts declaring that were mostly in response to the publication of a few research studies that have identified biomarkers that may help diagnose endometriosis.

If you're a research nerd, you can read more below. If you'd like to keep trucking with this article—feel free to keep scrolling.

Dr. Elkattah confirmed that laparoscopic surgery is still the only way to definitively diagnose someone with endometriosis. However, he added that most experts in the field agree that giving someone a “presumed diagnosis” based on their symptoms and proceeding with hormonal treatment as if the diagnosis is correct is the best approach for most people.

So, it’s crucial for an endometriosis specialist to work closely with each individual patient to determine the treatment plan that makes sense based on their symptom severity, overall health, and tolerance for hormonal treatment. The new ACOG guidelines also stress the collaboration between patient and doctor as a crucial part of treating endometriosis, especially regarding the decision of whether or not to get laparoscopic surgery.

If there’s only one thing you take away from this article, let it be that any time you’re concerned about your period, see a doctor. You’re not overreacting. You’re not being dramatic. You know when something is wrong with your body. It might not be endometriosis, but we’ll say it a thousand times, bad periods aren’t normal! So, if your menstrual cycle has always been “bad” or it suddenly or gradually worsens, make an appointment. 

There are several conditions that can cause abnormal periods, so it can be hard to determine if endometriosis or another reproductive condition is the culprit.

It’s more likely to be endometriosis if you have two or more of these symptoms:

• Periods that last longer than 7 days

• Heavy bleeding that soaks through a pad or tampon within 1-2 hours or includes clots, especially clots larger than a quarter

• Painful menstrual cramps that interfere with your regular life 

• Pain during vaginal penetration, like penis in vagina sex, fingers in vagina, or even putting in or wearing a tampon

• Anemia (usually from heavy bleeding)

• Chronic, unexplained headaches or migraines, gastrointestinal symptoms, urinary symptoms, fatigue, and/or brain fog.

If that symptom list is all too familiar, then it’s time to call your gynecologist! When making the appointment, list the symptoms you’re experiencing, and say that you’re curious if they could be caused by endometriosis. This makes it clear to your gynecologist that you want to explore the possibility of endometriosis specifically. 

While finding the right diagnosis and treatment plan is important, there are also tools that may help make symptoms more manageable in the meantime.

Your gynecologist might be the only medical professional you need to see, if you’re lucky. Some gynecologists feel comfortable giving an unofficial or provisional diagnosis of endometriosis based on your symptoms and creating an initial treatment plan from there. Unfortunately, some gynecologists still aren’t familiar enough with endometriosis to feel comfortable making that diagnosis. 

Keep in mind, all these directories have their own criteria for including specialists, and none of them provide a comprehensive list. But they are a great place to get started. 

Before your appointment, try to keep a daily log of your symptoms, even if it’s just a few words recorded in your Notes app or using a tool like the Pain Perception Project. If you can identify anything that makes you feel worse – certain foods, activities, sleep habits, etc. – jot these down as well. These notes will not only help you remember what to talk to the specialist about, but it will also help the specialist better understand if your symptoms are likely caused by endometriosis or something else.

There is relief out there, and you can find a treatment plan that will reduce your pain, make your periods more manageable, and hopefully, resolve some or all of the other systemic symptoms you might have. Though finding relief from your symptoms, whether they’re caused by endometriosis or not, is often a long journey, finding the right medical professional and making it to that first appointment are the first steps on your road to feeling better!