Endometriosis: The long wait for a diagnosis

It took 15 years of pain and symptoms for Sabrina Lobing to be diagnosed with endometriosis. Today, she is 29 years old and one of the 190 million women and girls of childbearing age who live with endometriosis, according to the World Health Organization (WHO). 

"I always thought something was wrong," Lobing says. At the age of nine, Lobing got her period for the first time. Her periods, which were always heavy, often lasted 10-15 days, and she was usually in a lot of pain. 

Later, fainting became a regular occurrence. At the age of 11, the pain was so bad that Lobing went on birth control pills, and by the time she was 18, she had tried about 14 different hormone treatments. But she did not hear about endometriosis until she was an adult. 

Endometriosis and adenomyosis

In the chronic disease endometriosis, tissue that resembles the lining of the uterus proliferates outside the uterus in the abdominal cavity. These endometriosis lesions can be distributed throughout the body and can be found on the ovaries, fallopian tubes, peritoneum and bladder. 

Lobing not only suffers from endometriosis but also from an adenomyosis. In contrast to endometriosis, in adenomyiosis the lesions are located in the uterine muscles. 

Affected women of endometriosis or adenomyosis often experience chronic pain in the lower abdomen, pain during sexual intercourse or bleeding disorders. In some cases, the diseases can also lead to infertility. 

The severe pain experienced by affected women like Lobing is more likely to be triggered by adenomyosis rather than endometriosis. According to an American study published in 2022, there is evidence that endometriosis may contribute to the later development of adenomyosis. 

While 10% of reproductive age women and girls globally have endometriosis, according to the WHO, the numbers vary widely for adenomyosis. A study published in 2017, showed that about 42% of women who had been diagnosed with adenomyosis also had endometriosis, and half of these patients had no known history of endometriosis.

Still, there are different theories about how endometriosis and adenomyosis develop. 

The long wait for a diagnosis 

According to Sylvia Mechsner, a professor of endometriosis research and head of the Endometriosis Center at Berlin's Charité hospital, the reason it takes so long to diagnose the disease is the speed of its progression.

"It's a slow, creeping process that develops over years. During this time, gynecologists don't yet see anything during examinations," Mechsner told DW.

During these visits, women are told it is normal menstrual pain and not pathological menstrual pain. 

Lobing is one of the women who went through this in her search for a diagnosis. She repeatedly heard doctors say that she as a woman had to accept the pain. The specialist Mechsner criticizes this response: "What's happening is that women are being left totally alone with their pain."

"For years, people relied on the fact that you can't see endometriosis, that you can only diagnose it through laparoscopy," says Mechsner, and this meant the diagnosis was delayed. But a lot can be seen via ultrasound. That includes endometriotic foci on the bowel or on the bladder, adhesions on cysts, and also adenomysis.

"The only thing we can't see on ultrasound is the so-called peritoneal foci," Mechsner added. 

Artificial intelligence for a faster diagnosis? 

Scientists estimate that a diagnosis of endometriosis takes 8-12 years on average. The question of whether there is a faster way to diagnose the disease is currently being investigated by a team of British researchers. 

The team wants to fuse information from ultrasound and MRI together to better diagnose endometriosis, according to the chief investigator of the DEFEND-study and reproductive medicine consultant Ippokratis Sarris. 

"Although each of these methods on their own have individual limitations, it is possible that if the separate results are combined, more accurate information could be provided to the clinician," Sarris said. 

In the process, they also want to investigate whether a 3D ultrasound could improve diagnosis of the disease. The goal is to develop an algorithm to better read the scans. 

"We believe that the latest technology in medical scanning, along with the development of powerful new algorithms, could be the key to more efficient diagnosis for patients," said one of the researchers involved, Marc Beggs, in a press release.

A painful disease

But the diagnosis still takes a long time. And that leaves its mark on the patients — and not just psychologically.

"You also have to think about what 10 years of pain means for the patient until the diagnosis is made at some point," says Mechsner. 

Pain memory can change and adapt in the process.

"Years of pain are very likely risk factors for developing chronic pain. That should be avoided at all costs," Mechsner told DW.  

It's too late for Lobing, who now lives with chronic pain. "It's better on some days and then there are worse days," she says, "but on a pain scale, I am always at a six." And that's every day. It's a burden not only on her but also on her relationship. 

Sometimes she can feel something changing in her body again, like when new cysts or endometriotic foci form on the ovaries.

"It's like someone is pulling on your ovaries all the time and you feel like you're about to be torn into pieces," Lobing says. 

Possible treatments 

According to endometriosis specialist Mechsner, the most important part of treating endometriosis is to define the suspicion of endometriosis at an early stage and treat the patient conservatively with hormone therapy first. If the patient had no bleeding during the hormone therapy and still felt pain, then surgery would be necessary. 

In this case, peritoneal lesions or cysts on the ovaries are very likely to be present. Surgery can also be performed if the person has been struggling to become pregnant.

"Then it is a matter of removing the endometriotic foci. Removing the foci improves the chance of pregnancy," Mechsner said. 

These days there are many options, she adds. Appropriate painkiller therapy or multimodal therapies can also help. Multimodal therapy combines different forms of therapy. Possibilities include acupressure, acupuncture, yoga or relaxation exercises. Regular painkillers can also help, but according to Mechsner, it is important that doctors explain to the patient which painkillers they can and cannot take.

Lobing has also tried to find her own ways to deal with the pain. She pays more attention to her diet because low-histamineand anti-inflammatory diets — meaning little meat, fish and few dairy products — can ease the pain intensity of endometriosis. She does yoga, meditates, and often paints to distract herself — sometimes for 13 hours a day.

"Then I forget the pain for a while," she says.