Endometriosis Ravaged My Body and Life. Why Did It Take So Long to Get a Diagnosis?

About the Project

Three years. Three cities. Seven different doctors.

That’s how long it took McKenna Oxenden to receive an endometriosis diagnosis.

Endometriosis is a chronic, inflammatory disease that occurs when tissue similar to the lining of the uterus grows elsewhere in the body. It often causes debilitating pain, excruciating menstrual cycles, pain with sex, problems or pain with bowel movements, urination and infertility. There is no definitive cure or known cause.

In this piece, Oxenden details her personal journey to receiving that diagnosis. She is one of the nearly 10 percent of women, transgender and gender-diverse people who have the disease.

Each time Oxenden went to the doctor, she told them how much pain she was in during her period. She told them that her cramps were so bad, it regularly left her in the fetal position. She told them that she couldn’t survive without a heating pad and ibuprofen and that she planned her life around when her period was coming.

Some of the doctors misdiagnosed her. Many told her the pain was in her head. All of them told her that period pain was normal.

Except it was never normal. By the time Oxenden received the proper diagnosis and treatment, the disease was so progressive that several of her organs were stuck together.

The only way Oxenden was able to get the treatment she desperately needed was to approach researching endometriosis like a reporter.

Despite a patient pool in the millions, the lack of reliable information about the disease in the medical community is so dire that many people turn elsewhere for help — usually through online patient communities.

Oxenden not only displays a deep vulnerability by chronicling her story but she talks with medical experts, community advocates and cites extensive medical research papers to explore the disconnect in the medical community and why the barrier is so high to an endometriosis diagnosis.

True endometriosis specialists always will be gynecologists, but not every gynecologist is an endometriosis specialist.

There were more than 50,000 obstetrician gynecologists in the United States in 2018. And yet, it’s estimated there are only between 200 and 300 specialists in the world who can properly treat and surgically remove endometriosis.

Medical schools hardly teach aspiring doctors anything about endometriosis and when it is talked about, often outdated information is taught which perpetuates the stereotype of endometriosis just being a “period problem.”

Endometriosis impacts 6.5 million women in the United States. Yet, the National Institutes of Health allocated $16 million — 0.038 percent of its $41.7 billion-plus health budget — to endometriosis research in 2022. That works out to $2 per patient.

Crohn’s Disease has a similar prevalence among U.S. women and received more than 65 times the amount of funding as endometriosis.

Endometriosis patients deserve better. They deserve for this disease to be talked about — no matter how taboo it may be to talk about periods. They deserve medical professionals to be educated. They deserve more knowledge and dedicated research about this disease.