When Zoë Armstrong saw the ultrasound report showing signs of endometriosis, she called her mom and started crying. After years of suffering and seeking help from doctors, I finally had an answer.
“Seeing it on paper, I thought, ‘I’m not crazy,’” the 31-year-old said. “I knew very well what I felt in my own body.”
Armstrong’s experience is not unusual. The American College of Obstetricians and Gynecologists notes that people can wait a decade or more from when symptoms appear to receiving a diagnosis of endometriosis. This painful condition, which causes tissue similar to the lining of the uterus to grow in other parts of the body, affects one in ten women worldwide.
(More than 6.5 million women suffer from endometriosis in the US)
New tests being used in other countries aim to help address the problem. And while they are raising hopes among doctors and patients, they are not currently available in the United States, and some experts hope they will be a useful tool, but not a complete solution.
Endometriosis causes debilitating pain
Research suggests that endometriosis is a type of chronic inflammatory disease. Its exact cause is unknown, although experts suggest that genetics plays an important role.
Symptoms vary depending on their severity and the location of the tissue. It is usually found in organs such as the bladder, intestine or ovaries, but in rare cases it can even appear outside the pelvis. They can include bloating, fatigue, and infertility, and, most commonly, pain that can occur during menstruation, sexual intercourse, and having a bowel movement.
“It can be debilitating pain that prevents you from going to school or work, or keeps you in bed for days,” explained Dr. Drorit Or, of Mount Sinai West in New York.
Armstrong’s first symptoms, at age 11, were shooting pains in her left side that took her to the school nurse’s office several times. As an adult, she also suffered from severe pain, as well as nausea, heavy periods, acne, and ovarian cysts that ruptured.
Shortly after getting married a couple of years ago, she experienced pain that she compared to having a little fencer inside her “stabbing me incessantly for hours at a time.”
There are many reasons for a late diagnosis
Armstrong was finally diagnosed with the disease at age 29, thanks to a doctor who also suffered from the same condition.
An ultrasound detected an endometrioma, a fluid-filled cyst. He searched the word on Google, and that was when he cried for the first time with his mother. He also did so when a nurse gave him the diagnosis verbally and when surgery officially confirmed the diagnosis.
One of the reasons diagnoses can take so long, according to experts, is that patients and doctors often consider menstrual pain normal. Symptoms can also overlap with other conditions, and not all health care professionals know or have experience with endometriosis, explained Dr. Megan Billow of the Cleveland Clinic.
A helpful step for patients, Or suggested, is to keep a diary in which they note when the pain occurs, where it is located, and how intense it is.
“This way, when you go to the doctor, you will come prepared,” she said. “You can ask without hesitation: Do you think I have endometriosis?”
Other countries use new tests
New diagnostic tests are currently available in some countries, but they have not yet been approved by the U.S. Food and Drug Administration (FDA).
One of them is EndoSure, it lasts half an hour and detects endometriosis by measuring electrical signals in the intestine using electrodes placed on the abdomen; The results are available to the doctor immediately.
Another, Endotest, tests a saliva sample for microRNAs that can indicate whether the condition exists, and gives results to patients within two to three weeks.
In the United Kingdom, an institute that provides national health advice recently published draft guidelines recommending that the National Health Service use both tests for three years while more evidence is gathered about their effectiveness. The goal is to accelerate diagnosis in primary care.
Dr. Mark Noar, founder of EndoSure, based in Maryland, said they are in the process of submitting their application to the FDA to obtain authorization for the test to be used as a support tool to help doctors make the diagnosis.
Meanwhile, the French company Ziwig is taking the final steps to make Endotest available to patients in the United States through another route that allows the developed tests to be offered through certain certified laboratories without the need for FDA approval.
Ziwig’s Dr. Andrew Spiers said it’s a starting point. When the doctor knows there is endometriosis, he said, that is the time to perform imaging tests if they have not already been done.
“I wouldn’t say that it is the only tool that a patient would have in their diagnostic process,” said Spiers.
American doctors agree that they would not replace other diagnostic tools and methods, but they will be useful. What they will not achieve, however, is solve the persistent problem of normalizing menstrual pain.
Available treatments
With the diagnosis, women can coordinate treatment plans with their doctors.
They include pain relievers such as ibuprofen and a prescription medication specific for endometriosis; hormonal therapies such as birth control pills, progestin therapy, and drugs that temporarily stop menstruation; and surgical treatments, including hysterectomy in some severe cases.
Armstrong underwent excision surgery, a procedure to remove endometriosis lesions and scar tissue. He said he still sees about three doctors a week for pelvic floor therapy and other problems. She also visits middle and high schools in New York City with the Endometriosis Foundation to educate students.
“They need to know what to watch for, not just endometriosis, but other women’s health conditions in general,” she said.
Or, the Mount Sinai doctor, said young women need to know that help and hope are available.
“They don’t have to live in pain,” Or insisted. “They can have a very, very good life controlling this disease.”
