3 Sneaky Signs of Endometriosis You Might Not Know About

Plus, how diagnosis and treatment for endometriosis actually works.

Endometriosis is a disease that can often significantly impact the quality of life of those living with it, many of whom may not even realize they have this condition. And it’s very common: The U.S. Department of Health and Human Services Office on Women's Health estimates that endometriosis may affect more than 11 percent of American women between 15 and 44, although it can occur in women of any age.

What Is Endometriosis?

There’s a lot of confusion and misinformation surrounding endometriosis – starting with the basic definition of what exactly it is. Dr. Iris Kerin Orbuch, MD, endometriosis specialist, co-author of Beating Endo, and subject matter expert in the endometriosis documentary, Below The Belt, says she has frequently seen it defined incorrectly, so she strives to share the correct definition in clear, specific terms at every opportunity. “Endometriosis is when you have cells that are similar—not identical, but similar—to the lining of the uterus (the endometrium) that are found outside of the uterus,” she explains. Symptoms occur because these cells develop and grow in areas of the body where they aren’t supposed to be.

Related: DWTS’ Julianne Hough Speaks Out About Endometriosis

A Painful Condition, and Often Challenging Diagnosis

The symptoms of endometriosis can be varied and wide-ranging, but often cause considerable pain and can disrupt normal daily activities and routine bodily functions. Worse, many patients spend years trying to learn what’s causing their symptoms—often receiving other incorrect diagnoses first.

“In the U.S., it's an average of eight to 10 years from symptom onset to diagnosis,” says Dr. Orbuch. “And I sometimes see people who are 20 years or more into searching for answers.” Part of the problem is that any of the multitudes of symptoms of endometriosis can be similar to those associated with other conditions. Also, as many experts and patients are quick to point out, women’s symptoms are often dismissed or downplayed as “normal” menstrual issues.

Related: Is It Normal to Get Cramps After Your Period? Here's What Doctors Say

Endometriosis Symptoms Can Worsen Over Time

Without treatment, endometriosis symptoms will often get worse. The tissue can grow over time and cause increased pressure or pain, says Dr. Erkan Buyuk, MD, board-certified OBGYN/REI at RMA of New York. “Depending on the system it affects, the symptoms may get worse due to growing lesions. For example, if it affects the bladder, it may start with frequency and pain on urination, but then blood in the urine may ensue as the lesions invade the lining of the bladder and grow.”

Most Common Endometriosis Symptoms

Dr. Tracey Haas, DO, Executive Director, Endometriosis Foundation of America (EndoFound), says some of the most commonly reported endometriosis symptoms include:

  • Pain during intercourse

  • Pelvic pain, which often worsens before or during a period

  • Infertility

  • Persistent, chronic fatigue

  • Painful and/or heavy periods

Related: Top Chef Host Padma Lakshmi Opens Up About Endometriosis

Sneaky or Surprising Endometriosis Symptoms

Those are the common symptoms—but there are some lesser-known symptoms too, that could be signs of endometriosis.

Digestive issues and bowel problems

Among the most surprising (yet extremely common) endometriosis symptoms are digestive issues. “Within the gastrointestinal realm, there's constipation, diarrhea, bloating—sometimes it's alternating constipation and diarrhea,” says Dr. Orbuch. The bowel itself can also be affected. It's not uncommon with endometriosis to have an endometrial-like tissue growth on the bowel, says Dr. Haas, noting that patients who have these kinds of GI-related endometriosis symptoms are often mistakenly diagnosed with IBS.

Painful urination and increased urinary frequency/urgency

Like digestive issues, urinary-related problems caused by endometriosis are often assumed to be other conditions. “Symptoms related to the urinary system can be mistaken for UTIs or renal stones,” says Dr. Buyuk.

Breathing and respiratory issues

Perhaps some of the most frightening and surprising endometriosis symptoms are those affecting the respiratory system. “In cases where endometriosis affects the lungs, symptoms such as chest pain, coughing blood, and severe shortness of breath due to pneumothorax (air collection between the lungs and the membrane covering the lungs) may occur,” says Dr. Buyuk.

Other Possible Endometriosis Symptoms

The list of symptoms that have been reported by patients with endometriosis encompasses virtually every part of the body. “Fatigue and backache are pretty common,” says Dr. Orbuch. “Then some people have left-sided pain, right-sided pain, shoulder pain, shortness of breath. The symptoms really span all organ systems.”

Dr. Haas often advises patients to track their symptoms on a calendar or in a journal, which can help identify patterns and may point to endometriosis as a possible culprit, as the condition’s symptoms are frequently cyclical and may routinely occur or peak during certain times in the menstrual cycle.

Diagnosis and Treatment for Endometriosis

Getting a definitive diagnosis of endometriosis can also be difficult because there’s no simple test for it and the growths often won’t show up on imaging. Dr. Haas says if the patient has a large endometrioma (a cystic lesion that commonly occurs with endometriosis), an ultrasound can sometimes pick it up—particularly if it's on an ovary.

“But it's notoriously impossible to see it when it's on the bowel, liver, diaphragm, or the peritoneum, which is the lining of the abdominal cavity,” says Dr. Haas. “So right now, the gold standard for diagnosis is laparoscopic surgery. An exploratory laparoscopy is the only way to get the tissue, send it to the lab and look at it in pathology and then say ‘Yes, this is endometriosis.’”

Although medications such as birth control pills and pain relievers may help alleviate some symptoms of endometriosis, they don’t address the actual cause of the problems. “The gold standard of treatment is minimally invasive excision of endometriosis,” says Dr. Orbuch. “It's a specific kind of surgery where you're excising—or cutting out—the implant. That’s the key for patients to know because most doctors do the wrong surgery, usually ablation of endometriosis or burning of endometriosis.”

Orbuch adds that it’s a common myth that hysterectomy can cure endometriosis. “Hysterectomy means removing a uterus. It would make no sense to remove someone's uterus [as a treatment for endometriosis] when, by definition, the disease is external to the uterus.”

Next up, find out everything you need to know about PCOS