What to Do If You Think You Have Endometriosis

Something you've probably heard a million times about your period—it should be painful—simply isn't true. Cramps certainly aren't comfortable, of course, but extreme or debilitating, hurts-too-much-to-go-to-work level pain isn't actually something you should expect or deal with forever. While there are several reasons why cramps might be doubling you over, one of the more common ones is endometriosis.

Affecting an estimated one in 10 women in the United States, endometriosis is a disease related to menstruation in which tissue that grows on the lining of the uterus—called endometrium—grows outside of the uterus (where it shouldn't). These tissue growths are usually found within the pelvis on the ovaries, fallopian tubes, bladder, vagina, rectum, intestines, bowels, etc. And this is partly what makes endometriosis its two worst things: Hard to diagnose and very painful in different ways for different patients.

Plus, "there's a lack of education about endometriosis, in general," says Dr. Karli Goldstein, MD, a gynaecological surgeon with the Seckin Endometriosis Center in New York City and medial advisor to the Endometriosis Foundation of America. In fact, the average time it takes for someone to be diagnosed with endometriosis is 10 years. "But I think women are told too often that pain is normal."

While responsibility is on both the patient and their doctor to get a proper (hopefully quick) diagnosis and start treatment, there are a few things that can ease the process.

Here, Dr. Goldstein and Dr. Kathy Huang, MD, a gynaecologist with NYU's Endometriosis Center, explain what you should do if you think your symptoms point to endometriosis.

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1. Track your symptoms.

The more specific you can be with your doctor, the better—especially because a lot of endometriosis symptoms don't happen all at once, but pop up at certain times throughout your cycle. So, instead of just listing your concerns, Dr. Goldstein recommends making a note of each symptom and when they happen.

For instance, do your cramps kick into high gear when you ovulate and then stay strong until your period starts? Write that down. Does it hurt to poop the week before your period? Write that down, too. Anything that feels irregular to you is fair game—not just cramps, but things like bowel issues, fatigue, bloating, back pain, pain during sex, etc. The easiest way to do this is just keep a diary of symptoms on your phone calendar.

2. Think really hard about your medical history.

Past health things that don't necessarily feel relevant to you (a person without a medical degree) may end up being crucial clues that can help your doctor diagnose you. For instance, Dr. Goldstein says one thing that tips her to potential endometriosis is when a patient has been diagnosed with irritable bowel syndrome, or IBS, but their symptoms haven't improved after they've made the recommended changes to their diet. Another: You were once prescribed a prescription-strength NSAID, like naproxen or ibuprofen, to help manage cramp pain. That's why it's important to be super forthcoming with your medical history.

Do yourself a solid and ask your female relatives about their periods, too. Even if no one has been previously diagnosed with endometriosis, knowing about any irregular period problems or other pelvic diagnoses can help your doctor.

3. Actually make a doctor appointment.

Few things are more annoying than calling a doctor's office, but you gotta do it. Dr. Huang says whoever you see for your annual exam—whether it's a gynaecologist or your general practitioner—is the doctor to start with. If you've spent a lot of time browsing endometriosis symptoms online, or have seen other doctors to no avail, you may also consider seeing an endometriosis specialist. SpeakEndo.com has great resources for finding endo docs in your area. Or, if you know anyone who has endometriosis, ask who their doctor is and start there.

4. Come prepared, and make sure you speak up.

Ideally, you have a great gynecologist who listens to you and asks you questions that make bringing up your concerns easy. But, unfortunately, that's not always the case. And even the best docs rush through routine appointments like annual exams, or also believe the bogus notion that period pain is normal, explains Dr. Goldstein.

This is why you should consider bringing a printed or handwritten list of the symptoms that you've tracked (from step 1 above) to your appointment so that you can pump the brakes and focus their attention to these concerns quickly. Or, revert quickly back to middle school and write "ENDO??" on your hand in pen to remind yourself to speak up. Whatever helps and motivates you to bring up your concerns with your doctor.

5. Give yourself a treat for being brave.

Your gynecologist's office likely does not have a bowl of lollipops at the front desk, though maybe it should? It's hard to speak up, especially around pain that people have been saying is "normal" and "fine" your whole menstruating life. Be nice to yourself and get a tiny reward—maybe your favorite cookie, or a ticket to a movie you want to see, or an extra hour of watching TV at night.

6. Be patient and persistent.

As more people speak out about endometriosis, it will hopefully get easier to diagnose and treat. But the unfortunate fact remains that getting a confirmed diagnosis—whether you have endo, some other pelvic issue, or another health concern—can take a long time. Don't give up if the first or third or fifth doctor you see tells you they can't find anything abnormal. "Even as I was growing up, I remember being told that pain was normal, and having painful periods was just part of what a lot of women experience," Dr. Huang says. "It may not always be endometriosis, but having pain is not normal, and we need to find out why."

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