By August 2017 the actress and writer Lena Dunham, 31, was fighting pain in her pelvic area that was so severe and unremitting she explained it made her delirious. “It hurts so bad that the human voices around me have become a sort of nonsense Teletubbies singsong,” she wrote in an essay for Vogue.
Since her early 20s, Dunham struggled with pelvic pain and other symptoms caused by her endometriosis—an inflammatory disease in which cells that should grow inside the uterus instead grow on the ovaries, fallopian tubes, and surrounding tissues, often leading to fertility problems. In 10 years, she underwent more than 10 surgical treatments, but her symptoms persisted. Convinced she had exhausted all mainstream options, Dunham finally checked herself into a hospital in New York City where she spent 12 days urging her doctors to perform a hysterectomy.
In her essay, Dunham acknowledges the procedure, which will prevent her from ever becoming pregnant, is not the right choice for everyone with her condition. She accepts it may not even succeed in making her symptoms disappear. But at this stage, no available treatments can address the root cause of endometriosis. “I made a choice that never was a choice for me, yet mourning feels like a luxury I don’t have,” she wrote.
Though hysterectomies are hardly a mainstay of endometriosis treatment, Dunham is not alone. Other women, including singer/songwriter and businesswoman Dolly Parton, have had the procedure to treat especially aggressive symptoms. Parton was touring in 1982 when she collapsed on stage in pain from her endometriosis. Following her partial hysterectomy, the then-36-year-old suffered from a bout of depression. “I would have made a nice mama, I think,” she said. “And I always thought I’d have kids.”
Generally, physicians pursue any one or a combination of three different strategies for endometriosis management: antihormone therapy; surgeries to remove uterine tissue from areas outside the uterus; and other medications designed to reduce pain and inflammation. At best, they can offer some relief from the pain and sometimes improve fertility outcomes, but in as many as 75% of patients, the pain returns.
While the severity of Dunham’s symptoms may not reflect the experiences of most patients with endometriosis, the condition is common, underdiagnosed, and potentially dangerous. It is thought to affect as many as 7 to 10 percent of all women, most of whom are diagnosed between the ages of 25 and 35. And it has been linked to fertility problems and certain cancers including brain cancer, ovarian cancer, and non-Hodgkin’s lymphoma.
Are better treatment options on the horizon?
With advancements in biomedical technologies, researchers have in recent years discovered several animal models with which to study the complex disease. New and exciting discoveries, including several experimental medications and the identification of a genetic component of endometriosis, have resulted. And researchers are now better positioned to find a cure.
In humanized mice, scientists have successfully developed a drug specifically designed to treat pain associated with endometriosis. They are now recruiting participants for a Phase 3 clinical trial. If successful, this test will mark the final stage before the drug is submitted to the Food and Drug Administration (FDA) for approval.
Wait… What do you mean “humanized mice?”
Rodents do not have menstrual cycles. Therefore, they do not shed uterine tissue, and obviously cannot develop endometriosis—at least not naturally. To test this new medication, the researchers transplanted endometrial tissue to areas outside the animals’ uteruses, causing them to develop abnormal cellular growth and symptoms characteristic of endometriosis in humans. In the mice, the team showed the experimental drug may be remarkably effective in treating endometriosis, as well as uterine fibroids and prostate cancer.
Animal models play a vital role in drug development. Following a human clinical trial for a different experimental endometriosis medication, a participant delivered a baby born with a cleft palate. But in their preclinical work, the researchers found no evidence of in-utero effects in their animal models, therefore ruling out any link between the deformity and the drug.
Meanwhile, animal research has found a third drug can be precisely tailored to match the patient’s hormone levels and symptoms. Considering how pain and fertility issues associated with endometriosis can range significantly in their severity, this is an exciting development.
Researchers have also studied existing medications for the treatment of endometriosis. Statins, which have long been used to manage high cholesterol, were shown to reduce the development and progression of endometriosis in rodents. Researchers recommend additional studies with animals, specifically baboons, to better understand optimal dosages and long-term effects. Since baboons are more biologically complex than rodents, and because they can develop endometriosis naturally, their inclusion in this research will strengthen the case for pursuing human clinical trials.
On the subject of monkeys, research with rhesus macaques has yielded tremendous advancements in medical knowledge about endometriosis. From a large colony of monkeys, scientists created a multi-generational family tree and found a strong connection between endometriosis and the animals’ genetics. This discovery may help researchers find cures and better treatments, as well as improved and less invasive diagnostic tools.
Progress in the diagnosis and treatment of endometriosis has accelerated dramatically in recent years with the introduction of new animal models with which to study the condition. New discoveries may one day provide millions of women with more options to better manage the condition.
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