Is it common?

Endometriosis occurs when tissue similar to the tissue that lines your uterus attaches to other organs of your body. Although it’s primarily characterized by extremely painful periods, a host of other symptoms often accompany it.

Endometriosis is fairly common, affecting more than 11 percent of American women of reproductive age. However, it can be difficult to diagnose.

If left untreated, severe endometriosis can result in infertility. Endometriosis can also increase your risk for certain cancers.

Keep reading to learn how to recognize the symptoms, as well as tips for relief until you’re able to get a diagnosis.

Endometriosis pain might feel like extremely painful period cramps.

If you’re like Meg Connolly, who was diagnosed two years ago at the age of 23, your pain may not be limited to the area around your uterus.

In addition to sharp abdominal pain, Connolly experienced sciatic pain, rectal pain, and pain during bowel movements. You might have diarrhea with your periods.

You may also feel pain in your legs or during intercourse. And although the pain isn’t limited to happening during your period, it usually worsens during menstruation.

Pelvic pain

Endometriosis can cause uterine lining cells (endometrium) to grow outside of your uterus. That means that the areas closest to your uterus — like your pelvis, abdomen, and reproductive organs — are most susceptible to these growths.

“Endometriosis causes a pain that’s very difficult to describe,” Connolly said. “It’s more than just ‘bad cramps’ — it’s the type of pain that even over-the-counter (OTC) medicine won’t resolve.”

Back pain

Back pain isn’t at all unusual with endometriosis. Endometrial cells can stick to your lower back, as well as the front of your pelvic cavities. This could explain why Connolly also experienced sciatic pain.

Although back pain is a common occurrence, back pain related to endometriosis will be felt deep within your body. Changing your posture or seeing a chiropractor won’t be able to relieve your symptoms.

Leg pain

If endometrial lesions grow on or around your sciatic nerve, it can cause leg pain.

This pain may feel like:

  • a sudden twinge, similar to a leg cramp
  • a sharp stabbing
  • a dull throb

In some cases, this pain may interfere with your ability to walk comfortably or stand up quickly.

Pain during intercourse

Sometimes endometrial tissue can scar over and form a nodule that is painful to the touch. These nodules can appear in your uterus, your cervix, or your pelvic cavities.

This can lead to sharp vaginal or abdominal pains during sexual activity, especially sexual intercourse.

Painful bowel movements

Endometrial cells can grow in the area between your vagina and your bowels. This is called rectovaginal endometriosis. This condition has its own set of symptoms, including:

  • irritable bowels
  • difficulty passing urine
  • diarrhea
  • painful bowel movements

This kind of endometriosis pain can feel sharp and insistent, and lifestyle habits like a diet high in processed foods can make it feel worse.

Although endometriosis pain may feel different for every person that experiences it, there are usually a couple of common factors that distinguish it from menstrual pain.

With endometriosis:

  • The pain is chronic. It happens repeatedly prior to and during your menstrual period —sometimes during other times of the month — for more than six months.
  • The pain is severe. Sometimes OTC pain relievers such as ibuprofen (Advil) or aspirin (Ecotrin) will not provide pain relief.
  • The pain is consistent. It happens often enough that you can anticipate it, and you recognize what it feels like.

Endometriosis can also cause other symptoms, including:

  • bleeding or spotting in between periods
  • excessive bloating
  • cramping
  • diarrhea
  • constipation
  • nausea
  • difficulty getting pregnant

For Connolly, it also meant:

  • heavy bleeding
  • anemia
  • headaches
  • difficulty focusing
  • food intolerances
  • ovarian cysts

In some cases, according to a 2013 study published in the Oxford Academic journal, endometriosis has also been linked to mental health conditions such as depression.

If you feel like your periods are more painful than other people’s, or if you experience pain during your period in all different parts of your body, see your doctor.

Some people with endometriosis don’t have severe pain as a symptom, but they experience one or more of its other symptoms.

The diagnosis process for endometriosis isn’t very straightforward. It usually takes several appointments to get the correct diagnosis. According to a small study conducted in Brazil, the younger you are, the harder it is to get a correct diagnosis.

The same study also concluded that it takes, on average, seven years from the onset of symptoms to get properly diagnosed.

For some, the endometrial tissue doesn’t show up on MRI, ultrasound, or sonogram testing. “The only way [for me] to get a clinical diagnosis was via laparoscopic surgery,” Connolly explained.

“The seventh OB-GYN I visited was the doctor who told me she thought I had endometriosis and that I could probably wait a few years to have surgery since I was so young.”

Worried about the recovery process, Connolly went back and forth about having the procedure done. But then, two weeks after the appointment, she experienced a ruptured ovarian cyst.

“My mom found me unconscious on the floor of the bathroom,” she said. After a frantic ambulance ride to the hospital, Connolly made her decision.

“That day, I decided I was going to find an endometriosis specialist and go forward with the surgery.”

Once a diagnosis is made, your doctor will work with you to create a symptom management plan. Your options will depend on the condition’s severity.

A typical plan may include:

  • prescription pain medication
  • surgery to remove the tissue overgrowth
  • hormonal birth control to prevent tissue from returning

With an official diagnosis, Connolly was armed with the information she needed to start treating her symptoms and take back her life.

“You know your body better than anyone else,” she said. “If you need to get a second, third, fourth, fifth opinion — do it! No one knows your body better than you do, and your pain is most certainly not in your head.”

Your overall pain management and long-term outlook will vary depending on your age, your symptoms, and how aggressively your doctor wants to treat you.

Some people, like Connolly, experience a great amount of relief as soon as they begin treatment. “After having excision surgery, my symptoms have immensely subsided,” she said.

It’s important to remember, though, that there isn’t a cure for endometriosis. Some symptoms might never go away. However, symptoms may be reduced after menopause, since the hormonal influence of this out-of-place uterine lining is no longer there.

For Connolly, treatment has helped, but endometriosis is still a significant part of her life. “I [still] struggle with horrific PMS, hormonal imbalances, heavy bleeding when menstruating, irregular periods, and ovarian pain during ovulation and menstruation.”

Until you’re able to get a diagnosis, there are ways to manage the discomfort endometriosis can cause. Connolly recommends heat therapy for endometriosis pelvic pain. “It really loosens and soothes the muscles in the area that cramps up when you’re dealing with endo pain,” she said.

Diet may also play a role in managing your symptoms.

“I avoid soy at all costs due to the hormonal spike it can cause,” Connolly shared. Medical research is starting to investigate how diet affects endometriosis. Cutting back on gluten and eating more vegetables both seem to have a helpful effect, according to a 2017 study.

Some research also suggests that light to moderate exercise may help prevent endometrial tissue for spreading to areas of your body where it shouldn’t be.