Are Europe’s Specialist Centers the Answer to Endometriosis?

Endometriosis affects roughly 190 million (10%) women and girls of reproductive age globally. Still, and despite its debilitating symptoms, it can take years to get a diagnosis. For example, it takes about 7.4 years for a diagnosis in the Netherlands, almost 9 years in the UK, and 10.4 years in Austria and Germany. This lengthy wait for a diagnosis and access to treatments can mean disease progression, with worsening physical symptoms, more complex cases, and risk for permanent organ damage and infertility.

Now, some European countries are offering dedicated endometriosis centers to ensure better management of severe forms of the disease, which experts say have been increasing. These centers are also providing wider training for doctors in other parts of the European Union and further afield.

Italy: Endometriosis Is a Sign of the Times

Paola Vigano, PhD, is the laboratory director of the infertility unit at Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milano, one of Italy’s largest hospitals with a dedicated endometriosis center. She calls the rise in endometriosis an “evolutionary mismatch” driven by the change in reproductive patterns of women.

“The age of menarche has dramatically decreased, the age of conception has increased, the number of kids women are having has decreased, and breastfeeding rates have declined. We have a lot of menstruation compared with the 18th and 19th centuries — and that’s the basis of endometriosis,” said Vigano, who was on the board of the World Endometriosis Society from 2019 to 2023. “Of course, there may be other mechanisms, such as pollutants and bacteria, that are contributing to the increase.” 

Vigano told Medscape Medical News that the expansion of expert endometriosis centers across Europe is contributing to the improved management of the disease, particularly complex cases. 

“In Europe, things are improving. There’s more money for research, more countries have specialized centers, and there’s more recognition of the disease, but we still have things that are missing that could be done to improve the lives of women.” 

One challenge is choosing the most appropriate treatment option. 

“It’s a difficult disease to treat and it has a big psychological impact on women. It’s a delicate balance to find the right intervention because some doctors want to operate when you can manage the symptoms using the oral contraceptive pill,” Vigano explained. 

She added that despite existing diagnostic delays in Italy, the country has a good working group on endometriosis, with hospitals meeting every year. 

France: Multidisciplinarity Is Key

In Bordeaux, France, Institut Franco-Européen Multidisciplinaire d’Endométriose (IFEM Endo) is a specialized center that undertakes more than 8000 consultations and 1000 surgeries every year. 

Professor Horace Roman, MD, founding member of IFEM Endo and a gynecologic surgeon specializing in endometriosis, told Medscape Medical News that endometriosis centers are well-positioned to respond to the growing number of complex endometriosis cases. 

“In our center, we perform a large number of procedures for rare endometriosis. This is routine for us, and it should be for each expert center worldwide,” he said.

Roman began treating endometriosis patients in 2004. It was only 1 year later when he decided he wanted to dedicate his surgical career to the condition. “But in 2005, this idea was found to be very strange because no one believed that I’d have enough patients to keep me busy. But progressively the number of patients increased to the point that, since 2011, my surgical activities have only been in endometriosis.” 

A key part of managing complex endometriosis cases is having a multidisciplinary team on hand to provide a wide range of care necessary to improving patients’ quality of life.

IFEM Endo has gynecologic surgeons who are exclusively dedicated to endometriosis surgeries, colorectal surgeons, gastroenterologists, urologists including one specialized in bladder function, radiologists, physiotherapists, and specialists in pain treatments and assisted reproductive technologies. 

The French center also aims to expand expert knowledge on the disease across the continent and beyond by providing fellowships, workshops, and masterclasses on a range of endometriosis surgeries. 

Hungary: Improving Skills Among Healthcare Professionals

Associate professor Attila Bokor, MD, PhD, is the coordinator of the endometriosis center at Semmelweis University in Budapest, Hungary, the largest specialized center of its kind in the country. It sees about 2500 patients every year, 15% of whom are from outside Hungary. Bokor told Medscape Medical News that, in recent years, he has seen an increasing number of patients with a very late diagnosis and complex cases. 

“[Patients] often see between five and seven specialists before they get a diagnosis. We only perform surgery when everything else fails, and then our major goal is to preserve organ function after surgery and improve quality of life,” he said.

“For me, it’s unacceptable that there’s still a diagnostic delay as long as 10 years in Europe…one of the most common misdiagnoses is appendicitis, which is unbelievable because they are completely different diseases.” 

Key to decreasing diagnostic delay is increasing awareness, knowledge, and skills among healthcare professionals. Bokor and colleagues from Semmelweis University provide a range of training to specialists from across Europe, including some from Central and Eastern Europe who lack specialized training in complex endometriosis surgeries. 

“We provide training on the diagnosis of endometriosis, transvaginal sonography, and dedicated surgical interventions for complex cases that take place at the university,” he said.

“We see specialists from Baltic countries who are just starting their centralized endometriosis care and who need to see how we work; how outpatient clinics work; how they can do major surgeries, and the type of instruments needed. We also have colleagues from other countries including Austria, Germany, and Denmark who are very advanced but want to expand their knowledge on specific surgeries.” 

For example, last year Semmelweis University’s endometriosis center provided surgical training on severe endometriosis that affects the colon, which is complex and requires special expertise, to gynecologists from Lithuania and Estonia, with the hope of expanding the intervention to more countries. 

UK: Recognizing Centers That Meet Care Standards

Although there are several expert endometriosis centers in the UK, there are calls for the expansion of multidisciplinary teams and clinical networks inside hospitals to increase management and treatment options. Currently, only 16% of hospitals that are not specialist endometriosis centers offer this. 

In 2024, a National Confidential Enquiry into Patient Outcome and Death report titled “ Endometriosis: A Long and Painful Road“ found that the disease required “holistic, joined-up, multidisciplinary care.” 

“Women report better care experiences when referred to specialist centers and when they have access to specialist nurses,” Ranee Thakar, MD, president of the Royal College of Obstetricians and Gynaecologists, London, told Medscape Medical News. 

She added that in the hope of improving care for women with severe endometriosis, the British Society of Gynaecological Endoscopy has created a national process to recognize specialist endometriosis centers that meet certain care standards. 

But, as she points out, there are more than 750,000 people currently waiting for hospital gynecology services in the UK, meaning that “women are also finding it more difficult to see a gynecologist, further delaying their chances of a diagnosis,” she added. 

Better Diagnostics

Experts agree that key to reducing diagnostic delays, improving the lives of patients, and reducing the need for surgical interventions is thedevelopment of affordable and reliable noninvasive diagnostics. 

“This would be the ideal scenario,” Bokor said. “This should either be based on blood testing or some imaging technology or a combination of these two. This could decrease the diagnostic delay to a few days or weeks.” 

Horace cited the recent development of a saliva test that analyzes different microRNAs, which he said “may change the diagnosis of the disease and reduce delays.” 

“This saliva test opens the door to more detailed, more specific assessments of various forms of endometriosis. Using the same path, I think we can develop tests that can predict which kind of endometriosis a young woman might develop in the future, which can help us to utilize prevention methods. I think endometriosis is a disease of the 21st century, and the change in knowledge about its genetic and molecular aspects are far richer now in 2025 compared with 2000.” 

Bokor reported no relevant financial relationships. Vigano reported that she is the co-editor in chief of the Journal of Endometriosis and Uterine Disorders. Roman reported receiving personal fees for surgical training and research from INTUITIVE, Johnson & Johnson, Gedeon Richter, Olympus, and IBSA.