Doctors Told Her the Pain Was “All in Her Head.” A Surgeon Later Found 73 Endometriosis Lesions

For years, Nicole Notar knew something was seriously wrong with her body. But doctors repeatedly told her that her symptoms were caused by anxiety.

She was eventually diagnosed with endometriosis at 26—and a surgeon discovered 73 endometriosis lesions throughout her body.

Her story is now shining a light on how difficult it can be for women and girls with endometriosis to get an accurate diagnosis.

Her Pain Started When She Was a Child

Notar says her stomach problems began when she was just 9 years old. After getting her first period at 11, however, the symptoms became significantly worse.

By high school, she was experiencing severe abdominal pain along with nausea, vomiting and diarrhea. The symptoms became so disruptive that she often went straight to the school nurse when she arrived at school.

Her parents took her to doctors in New Jersey and New York City. Tests and imaging repeatedly came back without an obvious explanation.

But Notar continued to insist that something was wrong.

Her mother even raised the possibility of endometriosis because she had previously been told she had the condition herself.

According to Notar, doctors dismissed the possibility, telling her that she was too young and suggesting that her symptoms were related to severe anxiety.

That diagnosis changed the way her symptoms were viewed.

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Instead of continuing to search for a physical explanation, Notar was encouraged to try approaches aimed at managing anxiety and stress. She tried meditation and mindfulness, and was even sent to a Lamaze class to learn breathing techniques for dealing with pain.

Nothing solved the underlying problem.

Her Teen Years Were Taken Over by Pain

By age 16, her symptoms had become so severe that she could no longer attend school normally.

She entered an outpatient psychiatric program while also trying to keep up with her education.

For a teenager who wanted to spend time with friends and play soccer, her life had become centered around managing pain and gastrointestinal symptoms.

Eventually, a medication helped control some of her symptoms enough for her to return to something resembling a normal senior year.

But the relief didn’t last.

When she went to college in New York City, the medication eventually stopped working.

She found herself spending enormous amounts of time in the bathroom and frequently staying home instead of going out with friends.

Still, she didn’t have an explanation for what was happening to her.

She Saw More Than 50 Doctors

Notar continued searching for answers into her 20s.

According to her account, she went through more than 50 gastroenterologists and OB-GYNs within her insurance network.

Some doctors suggested antidepressants. Others recommended hormonal birth control or medications that could induce early menopause.

But Notar wanted doctors to determine what was actually causing her pain.

Eventually, she decided she couldn’t keep living that way.

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She searched for an endometriosis specialist and found a doctor outside her insurance network who was willing to listen.

The difference was immediate.

Instead of telling her that the pain was psychological, the doctor told her that he believed her—and agreed to perform surgery to find out what was happening.

The financial cost was enormous. Notar says she drained her 401(k) and used a credit card to pay for the procedure.

But the surgery finally provided an answer.

The Surgeon Found 73 Lesions

In May 2023, when Notar was 26, she underwent excision surgery.

The procedure lasted more than six hours.

During the operation, the surgeon discovered 73 endometriosis lesions.

The disease wasn’t confined to one small area. According to Notar’s account, lesions were found involving her ovaries, fallopian tubes and colon, with disease covering areas including the bladder, bowel, rectum, uterus, appendix and abdominal sidewalls.

After surgery, her doctor reportedly asked her how she had managed to live with the extent of disease he had found.

For Notar, the discovery was both devastating and validating.

After years of being told that her pain was anxiety or that she was simply too young to have endometriosis, there was finally physical evidence of what she had been experiencing.

Her Life Changed After Surgery

Recovery from the operation wasn’t easy, but Notar says the difference in her everyday life was dramatic.

Before surgery, she recalls being unable to walk through a shopping mall without stopping because of stabbing pain.

Afterward, she was able to exercise again.

Even drinking water—something she says could previously trigger intense pain—became normal.

Her energy also improved.

The experience ultimately inspired Notar to create EndoExcisionForAll.org, a nonprofit intended to help women find information, referrals and financial assistance related to excision surgery.

Why Endometriosis Can Be So Difficult to Diagnose

Endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus. It can affect areas around the reproductive organs but can also involve structures such as the bowel, bladder and rectum.

Symptoms can vary considerably from person to person.

They can include:

• Severe period or pelvic pain
• Abdominal or back pain
• Heavy menstrual bleeding
• Nausea or vomiting
• Diarrhea or constipation
• Chronic fatigue
• Pain during sex
• Infertility

According to the medical experts quoted by Prevention, diagnosing the condition can be challenging, particularly because symptoms can overlap with other conditions. Imaging may sometimes identify endometriosis, but recognizing subtle signs can require a clinician with specific experience treating the disease.

The Endometriosis Foundation of America estimates that it can take 7 to 10 years for women to receive a diagnosis.

That delay can mean years of untreated symptoms and a significant impact on school, work, relationships and everyday life.

A Bigger Problem Than One Woman’s Story

Notar’s experience raises a difficult question: How many women are still being told that severe menstrual or abdominal pain is normal—or that it’s happening because of stress or anxiety?

Severe pain that repeatedly interferes with someone’s ability to attend school, work, exercise or live normally deserves medical attention.

And being young doesn’t automatically rule out endometriosis.

Notar now encourages women who feel dismissed to continue looking for a physician who will take their symptoms seriously.

Her story isn’t proof that every case of abdominal or menstrual pain is endometriosis. But it is a powerful reminder that persistent pain deserves to be investigated—and that patients should feel comfortable seeking another medical opinion when they believe something isn’t right.

For Nicole Notar, finding the right doctor didn’t just give her a diagnosis. It gave her an explanation for years of pain—and, ultimately, a chance to get her life back.

This story is based on Nicole Notar’s first-person account published by Prevention and featured by Yahoo Health. It is not a substitute for medical advice. Anyone experiencing severe or persistent pain should speak with a qualified healthcare professional.

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