Her doctor dismissed it as menstrual cramps.
But it wasn’t just period pain. It was endometriosis.
John, of Sharon, Mass., eventually sought help from an adolescent gynecologist and was finally diagnosed with endometriosis at 17.
“I was so relieved because all that time I thought, ‘Maybe I’m crazy,’” said John, now 18 and a pre-med student at Tufts University. “Why did no one tell me that coming of age was going to be this terrible?”
Endometriosis, which has been estimated to affect roughly 10 percent of women and girls worldwide and more than 11 percent in the United States, is an incurable disease that can cause excruciating pain, bowel problems and infertility, among other issues.
In patients with endometriosis, tissue similar to uterine tissue grows outside the uterus, forming lesions on the ovaries, fallopian tubes, bowels, bladder and other areas. The resulting inflammation, scarring and cysts that form often lead to debilitating pain and other problems.
Although most women are diagnosed in adulthood, many say they started experiencing pain as teens, but their symptoms often were dismissed — by female family members and doctors — as an unfortunate part of having a period.
More than 60 percent of women and girls with the disease were initially told by health-care providers — most often gynecologists — that nothing was wrong, data shows.
A lack of awareness, education and research about endometriosis among adolescents often results in delayed diagnosis and has made it difficult to know how common endometriosis is in teens. In one analysis of more than 1,000 adolescents with pelvic pain who underwent diagnostic surgery, 64 percent were found to have the disease.
“We shouldn’t be normalizing pain,” said Jessica Shim, a pediatric and adolescent gynecologist specializing in endometriosis at Boston Children’s Hospital.
Difficulties of diagnosing teens
Over the years, there have been many misconceptions surrounding endometriosis, experts say, including that adolescents don’t typically get it.
Compounding the problem is that most pediatricians do not have experience assessing endometriosis, and adult gynecologists may not have experience treating the disease in younger adolescents, who often present differently than adults. Parents also may be reluctant to take younger adolescents to a gynecologist, and teens may be nervous to have a gynecological exam.
“Kids fall into the gap, which is crazy, because they’re the ones who most need the help,” said Mary Lou Ballweg, president and executive director of the Endometriosis Association, a research and advocacy group.
The disease is also difficult to diagnose because lesions, particularly in young people, can be hard to spot. Imaging tests such as ultrasounds and MRIs may be useful in some cases, but the standard way to diagnose endometriosis is through laparoscopy, a procedure in which a small incision is made in the abdomen, and a camera, or laparoscope, is used to search for signs of endometriosis.
It takes a specially trained eye to recognize the lesions, which can look different in teens. In adults, lesions tend to be dark because they have been inflamed and bleeding for some time, but in adolescents, they may appear as clear or bright red blisters, said Anne-Marie Amies Oelschlager, a pediatric and adolescent gynecologist at the University of Washington.
Many women with endometriosis describe suffering during their adolescence but say they were not diagnosed for years, oftentimes not until adulthood.
Photo essay: ‘This Is Endometriosis’: Life with a chronic disease
Iris Kerin Orbuch, an OB/GYN in Los Angeles who specializes in excision surgery for endometriosis, understands the pain. She started having endometriosis symptoms in her 30s, but said doctors kept assuring her that she was simply manifesting her patients’ pain.
Later, when she started seeing the signs in her then-9-year-old daughter Alexandra Orbuch, doctors told her the same thing — that she was projecting, and her child was fine.
When Alexandra Orbuch was a teenager, her mother told her that she suspected endometriosis, and they discussed surgery to diagnose and treat the disease.
Just before her high school graduation, a surgeon excised Alexandra Orbuch’s lesions. “Almost immediately, the stomach pain that I’d been having for years — the awful cramping, the really bad periods — it was all gone,” said Alexandra Orbuch, now a 20-year-old student at Princeton University.
Afterward, her mother also had the surgery, to confirm the disease and treat it.
“It’s an invisible disease. The employer doesn’t know. The friend doesn’t know. The family member doesn’t know,” Iris Kerin Orbuch said. “And they wouldn’t understand.”
Shannon Hannawald, 39, of Denton, Md., started having severe period pain when she was 15, spending her adolescence in emergency rooms and undergoing imaging tests that routinely failed to provide answers.
Health-care providers told her parents she was exaggerating her pain to get out of school, she said.
“When I was 17, I had basically had it. I felt extremely alone. The people who were supposed to protect me didn’t believe me,” she said. “I attempted to commit suicide.”
It wasn’t until Hannawald was 20 that she was diagnosed via laparoscopy with severe endometriosis, she said. Lesions were ablated on the outside of her uterus, ovaries and fallopian tubes, and she was put on hormone therapy to keep them from returning. It didn’t work, and over the next decade, she underwent a dozen more surgeries, she said.
Many myths surrounding endometriosis are slowing fading, but, experts say, some persist, including that endometriosis does not usually affect women of color. It does, but research shows Black women appear less likely than White women to be diagnosed.
Genika Reed started having severe pelvic pain, bleeding and gastrointestinal problems in her 30s. Without ordering any diagnostic tests, she said, a gastroenterologist misdiagnosed her with chronic constipation.
In 2016, she was finally diagnosed with endometriosis. Lesions had attached to her intestines, colon, rectum and bladder, she said. Even then, she said she was not given any information about the disease.
“We’re told, ‘Oh, you’re a strong, Black woman. You can handle it,’” Reed, 44, of Fort Worth, said of the stigma she believes delayed her diagnosis. “A lot of Black women don’t speak up because they feel like they’re ignored.”
Jenneh Rishe, a 37-year-old registered nurse from Philadelphia, said it’s important for patients to be their own advocates.
Nearly a decade ago, Rishe, who is Black, was in a similar situation, searching for answers for the stabbing and relentless pelvic pain and a constellation of other symptoms that included trouble breathing because, unknown to her at the time, endometriosis lesions had attached to her diaphragm.
After finding a specialist through a support group on social media, in 2016 she underwent a laparoscopy to excise lesions from the abdominal wall, appendix, bladder and colon, and a thoracic surgery to remove them from her diaphragm.
“There’s so much misinformation circulating that you really do need to become an expert on this disease to be able to make the best choices for yourself,” said Rishe, who appeared in a documentary about endometriosis called “Below the Belt.”
Endometriosis symptoms are often treated first with medication, particularly for teens. Nonsteroidal anti-inflammatory drugs, or NSAIDS, are often given to treat pain. Hormonal therapy, including birth control pills, can regulate hormones to slow or even decrease the growth of endometriosis lesions.
Some women find relief combining conventional treatments with holistic therapies such as acupuncture, pelvic floor physical therapy and massage, herbal supplements and integrative nutrition.
But when the pain continues or progresses, or the patient cannot tolerate the drugs, surgical options may be considered. Laparoscopy — the same surgery used to diagnose endometriosis — is also used to treat it. A surgeon can treat lesions by burning them, called ablation, or cutting them out, called excision.
The procedures are not curative, but they can provide relief.
The exact cause of endometriosis isn’t known, but the risk of disease increases for those with a family history of endometriosis, people with autoimmune disease or exposure to certain environmental pollutants, including dioxin, which is produced by improperly incinerating municipal waste or burning trash, or released during natural occurrences, such as forest fires.
Emerging research points to a possible link between endometriosis and bacteria commonly found in the mouth and gastrointestinal tract — a finding that could lead to new treatment options.
Less invasive diagnostic tools for endometriosis may be around the corner. Research is investigating whether the disease can be detected through blood, saliva or urine tests.
Despite advances in diagnostics, though, Ballweg believes endometriosis will remain challenging to treat.
“Some people call it evil; some people call it the devil. This disease is so intense and so refractory and so persistent, we work with women in their 60s, 70s — the oldest I’ve spoken to was 90 — who are still dealing with aspects of this disease,” she said. “At this point, most of us consider endometriosis a disease without a cure, though there are many steps, including holistic, to still live a good life.”
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