Pelvic pain isn't normal. Many women have this illness but don't know it

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I've lived with unbearable period pain my whole life. Could I have endometriosis?

• About 10 percent of women in the United States are affected by endometriosis, a condition that causes severe period pain. There is no easy blood test to diagnose it - unlike, for example, a hemoglobin A1C for diabetes or troponin for a heart attack. Because of this, and poor awareness and stigma, endometriosis has long been underappreciated and underdiagnosed.

Most adult women with endometriosis report that their symptoms started in adolescence, but there's a significant delay in getting treated. Women see seven physicians on average before getting diagnosed. One small study found women experience a median delay of 8.5 years for endometriosis to be correctly identified.

Talking openly about symptoms is the first step. You should also encourage family members to do the same, because genes account for about half of a woman's risk for endometriosis. The next step is finding a doctor who takes you seriously. As a doctor, here's my advice:

• Emphasize the stakes. Dismissing pain is a real problem in health care, especially for women. Sharing how your symptoms affect your quality of life may help. For example, saying "My pain is really awful" may not paint as profound a picture as saying "My pain is so awful, I missed my daughter's graduation because I couldn't get out of bed." If you've hit a wall, it's important to find a new doctor.

• Get another opinion. I hear from patients that they worry their doctor may take "offense" to them looking for answers elsewhere. A doctor who truly values and respects patients would never feel this way. I'm always happy if someone gets another opinion. If another doctor offers something I hadn't considered, my patient's health might improve.

• Ask to see a specialist. Endometriosis is a diagnosis that some doctors may not feel comfortable approaching because it's outside their area of expertise. It's important to have your symptoms evaluated, at least once, by someone who diagnoses and treats endometriosis frequently - and can help you decide which next steps might be appropriate.

• The debilitating symptoms of endometriosis

During their teenage years, girls with endometriosis can experience pelvic pain so debilitating that they miss school. Patients have told me how they spent hours buckled over in pain with heavy bleeding in their school bathrooms while their friends were in class or played sports. As adults, women with endometriosis lose about 11 hours of work productivity each week because of disruptive symptoms.

Several of my patients who were found to have endometriosis were initially told that their symptoms were probably irritable bowel syndrome - another painful, incompletely understood condition that can mimic endometriosis symptoms.

But endometriosis is more than severe period pain and heavy bleeding. Many women also experience pain that is constant and unrelenting. Symptoms such as painful bowel movements, back pain, pain with sex, bloating and fatigue are common. And for some women, the first sign that they have endometriosis is trouble becoming pregnant.

• Getting diagnosed can be a challenge

The gold standard to diagnose endometriosis is a laparoscopic surgery, in which doctors look for tiny endometrial lesions. Undergoing any surgery carries risks, and this high barrier is partly why endometriosis remains so underdiagnosed.

Certain imaging tests, such as a transvaginal ultrasound, can detect some lesions, but tend to miss the common endometriosis location along the lining of the abdominal cavity.

We do have treatments for endometriosis, which include hormonal treatment, NSAIDs or surgical excision. They're not perfect, but they can help.

• The latest science on endometriosis

Endometriosis is classically characterized by tissue similar to the kind that lines the uterus implanting elsewhere: the abdominal cavity, the ovaries and organs, even as far as the lungs. For many years, that somewhat simple mechanical explanation - an issue of misplaced tissue - was how endometriosis was understood. A slew of recent studies, however, is upending that belief.

One way endometriosis occurs is when cells from the lining of the uterus travel backward during menstruation - up the fallopian tubes and out into the abdominal cavity, instead of being shed downward through the cervix and vaginal canal. These are called endometrial cells.

For years, the pain of endometriosis was thought to be driven by an inflammatory response wherever those cells implanted outside the uterus. The body's immune cells triggered the nearby nerves that perceive and process pain.

But last year, researchers at the Boston Children's Hospital working on a mouse model of endometriosis noticed something unexpected. When they disabled those pain-sensing nerves, not only did pain improve, but the size of the lesions containing endometrial cells also diminished.

Instead of the endometriosis causing pain, it was as if the pain nerves themselves were causing the endometrial cells to grow.

A year prior, in 2023, scientists had found that patients with endometriosis shared genetic similarities to those with chronic migraines. In both diseases, nerves that can sense pain release a molecule called calcitonin gene-related peptide, or CGRP, that signals to the immune cells around it. This rapidly triggers the inflammation and pain associated with these conditions.

Medications that block that molecule have been proven effective in about 50 percent of migraine patients and are now recommended as first-line options for migraine prevention.

Scientists wondered: Might these medications also help in endometriosis?

So the group at Boston Children's Hospital studied what would happen in their model when treated with these drugs. Not only did pain significantly decrease, but also again, for two of the drugs, the endometrial lesions themselves shrunk. In additional experiments, the scientists found that CGRP signaling spurred a vicious cycle: Endometrial lesions triggered the release of more CGRP, which in turn spurred growth of the same endometrial lesions. All of this creates a painful inflammatory loop.

It's still early to say what will happen in humans with endometriosis; clinical trials are needed. But the findings are changing how we frame the illness - not as an anatomical issue, but as a systemic neuroimmune disease. Research like this could also lay the groundwork to help patients who don't respond to standard endometriosis therapies.

• What I want my patients to know

Too often, patients are told by family members and health-care providers that their pain - even the kind that keeps them from enjoying their friends and succeeding at school and work - is normal. They believed that extreme pain was something all women experienced, or that those with "light" periods were lucky. That's a myth that I've seen propagated even within families, when, in reality, everyone was suffering.

Trisha S. Pasricha is a physician at Massachusetts General Hospital, an instructor in medicine at Harvard Medical School and a medical journalist.

Previously:
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• How can I keep my energy up as I age?
• These essential oils have science-backed health benefits
• How can I get healthier hair? Here's what the science says
• More young people are getting cancer. Can you lower the risk?
• Should I take ashwagandha for sleep? Here's what the science says
• Are you taking your meds wrong? Many patients make these common mistakes

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