How is thoracic and diaphragmatic endometriosis typically found and diagnosed?
Because this is such a rare form of endometriosis, it's often missed or misdiagnosed for months or even years. A key clue doctors look for is the timing — symptoms that line up with your menstrual cycle are a major red flag for thoracic Show Full Answer
How is thoracic and diaphragmatic endometriosis typically found and diagnosed?
Because this is such a rare form of endometriosis, it's often missed or misdiagnosed for months or even years. A key clue doctors look for is the timing — symptoms that line up with your menstrual cycle are a major red flag for thoracic endometriosis syndrome (TES).
MyEndometriosisTeam members describe symptoms like feeling "out of breath with most menstrual cycles, feeling like someone is sitting on my chest" and "tightness in my chest, neck, and lungs whenever I have my period." Doctors typically diagnose TES through a combination of the following:
- Chest X-rays, CT scans, or PET scans — used to spot lung nodules or fluid
- Video-assisted thoracoscopic surgery (VATS) — the most common procedure, where a tiny camera is inserted through small cuts in the chest wall to see, biopsy, and remove tissue
- Bronchoscopy — a camera tube inserted through the mouth into the lungs
- Thoracoscopy — a tube inserted through a small chest incision to investigate breathing issues or chest pain
Many people are actually diagnosed while being treated for a collapsed lung or other breathing problems. One MyEndometriosisTeam member shared a helpful tip: bringing articles or studies about thoracic endometriosis to your appointments can make doctors more likely to take your symptoms seriously.
If you have pelvic endometriosis alongside these symptoms, make sure to mention both to your doctor — between 50% and 84% of people with TES also have pelvic endometriosis, and that connection can help speed up diagnosis.
July 19
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