Pain during periods is unfortunately common. But pelvic pain when you’re not on your period, or menstrual pain that becomes unmanageable (so intense that you’re missing school or work, is negatively impacting your relationships or is diminishing your quality of life) is not normal. And it might mean you’re suffering from endometriosis.

What is endometriosis?

Endometriosis is a chronic condition in which the uterine lining tissue (what’s shed each month during periods) starts growing somewhere it shouldn’t—essentially, anywhere outside the uterus.

It’s most often seen in the abdomen or pelvis, but can also grow in the diaphragm, lungs, bowel and abdominal wall (like around a c-section scar). That extra tissue growth can cause endometriosis symptoms like:

Endometriosis affects approximately 7% of women and other people with uteruses during their reproductive years (generally teens through early 50s). The exact cause of endometriosis is unknown, but it’s believed to be a combination of genetic, biological and environmental factors. If left unaddressed, endometriosis commonly causes continued or worsening pelvic pain and infertility.

How endometriosis is diagnosed

Diagnosing endometriosis can be challenging because period pain and heavy menstrual bleeding are subjective. People go years or decades dealing on their own, thinking whatever they’re experiencing isn’t “enough” to seek help. But we know 70-80% of people who experience chronic pelvic pain have endometriosis. So to be clear: it is not normal to be miserable!

If you feel you have higher-than-average menstrual or pelvic discomfort (whatever that means to you), the first step is to talk to your provider about your symptoms.

After discussing your symptoms, your provider may do a physical exam or order a pelvic ultrasound to rule out other potential causes, or confirm a diagnosis.

How endometriosis is treated

The good news is there are many treatment options available to help manage and mitigate endometriosis symptoms; you do not need to just live with it. Depending on the severity, your provider might prescribe anti-inflammatory medication and/or hormonal treatment to lessen the pain of your symptoms and suppress tissue growth.

If those treatments aren’t effective—or an ultrasound shows cysts on the ovaries (endometriomas)— your provider might recommend surgery.

Medical management:

NSAIDs. For those with regular menstrual cycles, 600mg of ibuprofen every six hours, starting the day before your period and through its duration, can decrease inflammation and ease cramping pain.

Hormonal birth control. Birth control pills suppress the normal cycling of estrogen.

  • The pill. Cyclic dosing—three active weeks and one placebo week to have a period every month—or continuous dosing—four weeks of hormones to prevent a period—are options. Continuous dosing helps with more severe symptoms.
  • Mirena IUD. The IUD decreases bleeding during the menstrual cycle, which eases cramping.
  • Depo-Provera shot. A progestin-only injection that suppresses your menstrual cycle thereby reducing inflammation, bleeding and cramps.

Hormone therapy. This option stops the ovaries from producing estrogen, leading to a medical form of menopause and prevention of periods all together.

Surgical intervention:

If medical management doesn’t help ease the pain of endometriosis, surgery can be an option, with one important caveat. The amount of tissue found during surgery doesn’t often match the severity of symptoms. For example, if the uterus looks relatively normal, the symptoms can still be significant. This means providers cannot guarantee that surgery will fix the pain completely. This is one risk associated with endometriosis surgery.

The surgery is minimally invasive and performed laparoscopically via small incisions in the abdomen. A laparoscope (a thin video camera) is then inserted to visualize and inspect the abdomen and pelvis, and other instruments are used to remove the endometriosis tissue, as well as any cysts.

Recovery from endometriosis surgery usually takes about two to four weeks, with a full recovery after four to six.

Lifestyle changes that can help endometriosis symptoms

Certain lifestyle choices have the potential to ease endometriosis symptoms by decreasing the body’s inflammatory reaction. A low-fat, high-fiber diet and foods high in vitamin D and antioxidants may help, especially when combined with medical treatments.

Endometriosis and pregnancy

Because scar tissue can build up in the reproductive organs, endometriosis can lead to blocked fallopian tubes, impaired egg release or hindered sperm movement. Endometriosis can also throw off hormonal balance, impacting ovulation. This is why trying to conceive with endometriosis is not easy. We know that 38% of infertility patients have endometriosis—and while that might sound daunting, knowing you have it is a better starting point for overcoming it than not knowing.

If you have endometriosis and are trying to get pregnant, consult with your provider about your options, which may include surgery to remove any visible scar tissue or cysts, intrauterine insemination (IUI) or in vitro fertilization (IVF)—each dependent on the level of endometriosis you have.

Break the silence about endometriosis

Too many people assume the period pain they experience is normal. This is one of the reasons it takes an average of eight years until someone receives an endometriosis diagnosis, according to the National Institute of Health.

Identifying the right treatment plan for you might take some time, but the sooner you start that conversation with your provider, the sooner you’ll find relief. If you’re experiencing severe pain with periods or pelvic pain when you’re not on your period, look for someone with the experience and patience to help you find answers and a treatment plan that’s right for you.