Endometriosis is a disease that affects 190 million girls and women of reproductive age, according to the World Health Organization.
In endometriosis, the cells lining the uterus, or the endometrium, start to grow outside of it. It can then affect the pelvic tissue, along with the ovaries and fallopian tubes. There are other documented symptoms associated with the disease.
If left untreated, some of the symptoms include pain, along with bloating, excessive menstrual bleeding, and digestive distress. It can also affect a woman’s fertility. While endometriosis is not fatal, it can lead to a reduction in the overall quality of life because of symptoms.
Some prescribed forms of treatment include hormone therapy and pain management, according to John Hopkins Medicine. Another form of treatment for endometriosis is surgery.
Despite available treatments for women who struggle with endometriosis, the experience of having it can be devastating.
Micaela, a 31-year-old woman living in Australia, shared her experiences facing the disease with the Jean Hailes for Women Medical Center. She talked about when she was young and first started experiencing symptoms.
“The first time I guess I had symptoms, that retrospectively I recognize were endometriosis, was when it came to sex,” she said.
The pain that she experienced impacted her relationships and her social life. But then, things got worse.
“I woke up one morning and I was essentially paralyzed,” Micaela said. “I was in so much pain I couldn't even really tell to begin with where it was coming from.”
The pain was such that she said she could not move for 40 minutes and was unable to reach her phone to call for help. Eventually the pain subsided and she was able to call her mother. She was rushed to the hospital for an examination, where it was discovered that she had a cyst that was causing the pain. She said she was referred to a gynecologist.
Unlike other diseases that mainly affect women like breast cancer and osteoporosis, endometriosis is one that does not get a lot of coverage. It then makes it difficult to create effective treatment methods, or even a cure.
Despite that, there is an effort by the scientific community to understand where it comes from. One study published in 2018 in an Oxford Academic Journal titled Human Reproduction looked at possible connections between endometriosis and childhood sexual abuse.
“Childhood sexual abuse, emotional abuse/neglect and inconsistency experiences were associated with the diagnosis of endometriosis,” was part of what researchers summarized in the study.
Other forms of abuse like physical abuse were also looked at. However, researchers in that study found no connection between those forms abuse and an endometriosis diagnosis.
Another problem when it comes to treating endometriosis is the perception by some physicians that the pain experienced is the result of a “bad period” or some other easily excusable reason. Such reasoning is having a detrimental effect.
“Every OB-GYN until I was 28 said, ‘That’s normal, some women just have difficult periods,’” a woman named Lindsey Sorenson told The New York Times in a July 2022 article.
Like Micaela, Ms. Sorenson became so entrenched in pain as she grew older that one day her boss found her crouched in her cubicle in the fetal position. When she went to get examined, it was discovered that the endometriosis had spread to her rib cage and elsewhere, according to the New York Times article.
Dr. Kathy Huang, director of the Endometriosis Center at N.Y.U. Langone, echoed what Ms. Sorenson had said earlier in the article about periods, in that when she was younger, she was told that experiencing pain was normal.
“That’s the first myth we need to dispel, that pain is normal,” Dr. Huang said.
Mary Lou Ballweg, president and executive director of the Endometriosis Association and a sufferer of the disease, told local station KXXV in Waco, Texas that long-held beliefs about it jeopardize women and girls.
"I'm not blaming them. Just saying we have to find a counter to this social conditioning,” she said.
There is currently no known cure for endometriosis. Researchers are still trying to understand it. All the while, millions of women are suffering from a disease that cripples their body.
Anita Hancock, a woman in Texas who suffers from chronic pain due to endometriosis, struggled to get her any of the physicians she saw to take her seriously. All the while, she tells KXXV that she encourages women to speak up and be heard.
"Keep fighting, do research and find a doctor that's going to listen," she said.
For more resources on endometriosis, visit the Endometriosis Association or visit the National Institute of Health website with information for patients, researchers, and physicians.
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