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Researchers say tall, thin girls appear to have a higher risk, but other experts say endometriosis itself can produce leaner bodies. Getty Images
  • A new study concludes that girls who are taller and leaner have a higher risk of endometriosis.
  • But other experts say endometriosis itself can cause leanness in girls and young women.
  • Experts say endometriosis is difficult to diagnose. They point out that severe menstrual pain might be a symptom.
  • They also note that there’s no cure for the disease and most treatments are not necessarily good options for all women.

New research suggests that girls who are tall and lean are more at risk for developing endometriosis, but some experts argue it’s not that simple.

The study, published today in the journal Annals of Human Biology, spanned 66 years and followed the path to adulthood of more than 170,000 girls who were 7 to 13 years old when researchers began charting their progress.

The researchers found that girls who had a higher body mass index (BMI) in childhood had a lower risk of endometriosis compared with girls who were lean and tall.

“Our findings suggest that indicators of risk can be picked up at an earlier age, which might help speed up diagnosis so treatment can be started to slow the growth of endometrial tissue,” Julie Aarestrup, PhD, lead researcher of the study from Denmark’s Center for Clinical Research and Prevention, said in a press release.

In undertaking the research, Dr. Aarestrup and colleagues analyzed the height, weight, and birth weight of girls born in Denmark between 1930 and 1996.

Follow up began in 1977 or when the girls reached age 15, whichever occurred later.

The study ended when the participant was diagnosed with endometriosis or adenomyosis (when endometriosis grows into the muscle wall of the uterus), or in June 2017, whichever came first.

The researchers said they found that thinner and taller girls were more likely to be at risk for endometriosis.

A 2.3 kilogram difference between two 7-year-old girls in the study was associated with an 8 percent increased risk of endometriosis in the girl who weighed less.

A girl who was 5.2 centimeters taller was associated with an increased endometriosis risk of roughly 9 percent.

Dr. Valerie A. Flores, an assistant professor in the department of obstetrics, gynecology, and reproductive sciences at the Yale School of Medicine in Connecticut, argues the relationship between height, weight, and endometriosis is more complex than the new research indicates.

“The study has it a bit backward. This is actually a very common misconception,” Flores told Healthline. “It’s not that if you’re lean or skinny or tall that that predisposes you to developing endometriosis. It’s that the endometriosis in and of itself by being a systemic disease tends to lead to a lean phenotype.”

“It’s been very well described in the literature that women with endometriosis tend to be thinner,” she added. “But most people have said it the way this paper has said it, which is that if you’re thin, that predisposes you to endometriosis.”

“But it’s the reverse,” she continued. “If you have endometriosis you are more likely to be thin because endometriosis is acting in a systemic nature… it’s acting at sites distant to the pelvis like the liver, which is involved with metabolism and that, in turn, is leading to changes in genes that are involved in weight loss or weight gain.”

About 1 in 10 women in the United States and 200 million women worldwide are estimated to live with endometriosis.

The condition occurs when tissue called endometrium, similar to that found in the lining of the uterus, grows outside the uterus.

While similar cells that build up in the uterus break down and exit the body, endometrial cells that grow elsewhere in the body have no way of escaping.

Resulting symptoms can include severe cramps, lengthy or heavy periods, nausea or vomiting, chronic fatigue, painful intercourse, and problems with the bowel and bladder.

There’s no known cause and no known cure for endometriosis. Women can spend years waiting for a diagnosis.

“There are huge diagnostic delays in endometriosis. Women go 7 to 10 years and see 3 to 5 doctors before they ultimately get diagnosed with the disease,” Flores said.

Dr. Anna Reinert, an obstetrician and gynecologist at Keck Medicine of USC, said current approaches to treatment of endometriosis are problematic.

“We have started describing the state of endometriosis treatment in America as a ‘care crisis,’ which is appropriate,” Reinert told Healthline. “In part because of inadequate research from which to issue practice guidelines, the majority of obstetrician-gynecologists have a poor understanding of endometriosis and chronic pelvic pain.”

“Furthermore, very few gynecologists are trained in appropriate surgical treatment of endometriosis,” she continued. “This leads to many patients having diagnostic surgery delayed for years, or undergoing surgery that does not effectively treat their disease.”

She argues it would be helpful to have an indicator that identifies woman at risk for endometriosis.

“What will be most helpful is studies identifying a biomarker — a blood test, for example, that helps identify patients at risk for the disease. Unfortunately, height or low BMI isn’t specific enough to be very helpful clinically,” she said.

Experts say the treatments available aren’t ideal either.

“Treatments include surgical removal of endometriosis implants or lesions, medications that decrease or inhibit estrogen production, and the closest we have to a cure is hysterectomy and removal of the ovaries. However, none of these options are great options,” Dr. Clara Paik, clinic medical director of obstetrics and gynecology at the University of California Davis, told Healthline.

“The medications cannot be used long term due to risks of bone loss, and obviously a hysterectomy and removal of ovaries are not good options for women who want to preserve their fertility,” Paik said.

“Also, removing ovaries in young women can lead to earlier onset of cardiovascular disease and osteoporosis,” she said. “Multiple surgeries for removal of endometriosis implants can be associated with risks such as adhesions and bowel injury.”

Flores said women have been conditioned to believe painful periods are normal. She argues women should be mindful of warning signs that the pain they experience when menstruating might be more than standard period pain.

“Endometriosis tends to be progressively worse menstrual cycles, usually does not respond to nonsteroidal anti-inflammatory agents, and tends to also have other cyclical symptoms whether they be bowel or bladder symptoms,” she said.

Dr. Kathleen M. Brennan, associate clinical professor in the department of obstetrics and gynecology at the David Geffen School of Medicine at the University of California Los Angeles, said women shouldn’t hesitate to discuss painful periods with their doctor.

“We can’t predict who will have endometriosis, other than knowing that daughters or sisters of women that have endometriosis are at risk,” Brennan told Healthline.

“I think it’s important for adolescents and young women to discuss painful periods with their doctor,” she said. “Gynecologists see many women with endometriosis and it’s always in the list of possible diagnoses when girls or women describe painful periods.”

Experts agree that endometriosis is a disease that warrants more research, but Reinert notes endometriosis doesn’t receive the same level of funding as other diseases.

“In the United States, endometriosis receives some of the lowest funding of any disease. It’s number 276 on the National Institutes of Health’s budget for 288 diseases, receiving about 1 dollar per patient,” she said. “It’s hard to make progress toward a cure in this environment.”