Endometriosis and the lesser-known thoracic endometriosis syndrome

March is Endometriosis Awareness Month, a time to shed light on a condition that affects millions of women worldwide. Endometriosis is a common condition that affects about 10% of people during their reproductive years. It occurs when cells similar to the lining of the uterus, known as the endometrium, spread into the pelvis or other areas of the body. This abnormal tissue irritates the surrounding organs, causing inflammation, pain, bleeding, scar tissue (adhesions), infertility and other issues that can severely impact quality of life.

“Endometriosis most commonly affects the reproductive system, bladder, rectum and bowels,” said Dr. Joseph Nassif, professor of obstetrics and gynecology at Baylor College of Medicine. “However, in rare cases, it can spread to the diaphragm, lungs, liver and even the brain.”

What is thoracic endometriosis syndrome?

When endometriosis involves the thoracic cavity, it is called thoracic endometriosis syndrome (TES). TES can cause chest pain, coughing up blood, lung collapse or nodules in the lungs, generally in a cyclical pattern that can be linked to menstruation. Diagnosing TES can be challenging because its symptoms may be vague or mistaken for other conditions.

“Thoracic endometriosis is often missed because its symptoms can look like other lung or breathing conditions,” said Dr. Shanda Blackmon, a thoracic surgeon who specializes in minimally invasive procedures. “Being aware of TES and how it presents is key to catching it early.”

How MRI helps with diagnosis

Timely diagnosis is critical in preventing years of unnecessary pain and disease progression. Women with endometriosis suffer for an average of 10 years before receiving an accurate diagnosis and treatment.

“Pelvic ultrasound and MRI can help identify endometriosis in the reproductive organs,” said Dr. Xiaoming Guan, professor of obstetrics and gynecology at Baylor College of Medicine and specialist at the Endometriosis Center at Texas Children’s Hospital. “Advanced imaging improves diagnosis and allows for better surgical planning.”

When doctors suspect TES, imaging tests play a key role in making the diagnosis. Chest X-rays and CT scans often are used first, but they don’t always show soft tissue problems very well. That’s where magnetic resonance imaging (MRI) comes in – it provides a clearer picture, especially for spotting endometriosis in the diaphragm.

“Since the chest cavity is complex, we use special imaging techniques to improve the chances of finding small endometriosis plaques that might not show up on regular scans,” said Blackmon, professor of surgery and director of the Baylor Medicine Lung Institute.

Blackmon recently published a study in Abdominal Radiology that highlights that while TES is rare, it can cause significant symptoms. So, a dedicated MRI protocol is crucial for diagnosis and surgical planning due to the thoracic cavity’s unique anatomy, with optimal management requiring a multidisciplinary approach involving radiology, laparoscopy and VATS.

Some MRI scans are especially useful for spotting thoracic endometriosis. T1-weighted scans help detect bleeding because they make fat appear bright and fluid appear dark, making blood easier to see. T2-weighted scans are better at finding fluid-filled cysts since they make fluid appear bright. Other imaging techniques, like diffusion-weighted imaging and postcontrast scans, help doctors rule out more serious conditions, such as cancer. Using a combination of these scans gives doctors a clearer picture and helps them make a more accurate diagnosis.

Why a team approach works best

TES is tricky to manage, so patients often need care from multiple specialists, including radiologists, gynecologists and thoracic surgeons. In some cases, surgery is the best option, often using a minimally invasive approach like video-assisted thoracoscopic surgery.

“Each patient’s treatment should be based on their specific symptoms and what their scans show,” Blackmon said. “When different specialists work together, we can provide the best care, from diagnosis to treatment and recovery.”

While there is no cure for endometriosis, early intervention can help alleviate symptoms, preserve fertility and prevent disease progression. Seeking care from an experienced endometriosis specialist is key to improving long-term outcomes.

“Robotic or laparoscopic excision surgery is considered the gold standard in endometriosis treatment,” Guan said. “Minimally invasive techniques allow us to remove endometrial tissue while preserving affected organs.”

Raising awareness and improving care

Even though TES is rare, it can have a significant impact on those who experience it. Fortunately, improvements in imaging and surgical techniques are helping doctors diagnose and treat it more effectively. Spreading awareness among both doctors and patients is essential to ensuring TES isn’t overlooked.

“By refining our diagnostic tools and surgical methods, we can give patients better options for managing TES,” Blackmon said. “Recognizing the signs early and taking action can make all the difference in improving quality of life.”

To make an appointment with the Endometriosis Center at Texas Children’s Pavilion for Women, call 832-826-7500. To make an appointment with Blackmon at the Lung Institute, call 713–798–5864.

By Tiffany Harston, senior communications specialist in the Michael E. DeBakey Department of Surgery