Thoracic Endometriosis: What You Need to Know

By the Endometriosis Alliance

Understanding Thoracic Endometriosis

Thoracic endometriosis is a rare form of endometriosis where tissue similar to the uterine lining grows inside the chest cavity — around the lungs, diaphragm, or chest wall.

Although uncommon, thoracic endometriosis can cause serious symptoms and should never be dismissed. Studies show that 50% to 84% of those diagnosed with thoracic endometriosis also have pelvic endometriosis.

Recognizing the signs early is critical to receiving the right care and treatment.

What Is Thoracic Endometriosis Syndrome?

The thoracic cavity houses vital organs like the lungs, heart, and diaphragm. When endometrial-like tissue grows in this area, it can cause a range of symptoms collectively called Thoracic Endometriosis Syndrome (TES).

TES includes four main conditions:

• Catamenial pneumothorax: Collapsed lung caused by air leaking into the chest cavity
• Catamenial hemothorax: Collapsed lung caused by blood pooling in the chest
• Catamenial hemoptysis: Coughing up blood during menstruation
• Lung nodules: Small clusters of endometrial-like tissue inside the lung

The term “catamenial” refers to symptoms that occur monthly, typically around the start of a menstrual cycle.

Symptoms of Thoracic Endometriosis

Symptoms can vary, but the most common signs include:

• Sudden chest pain, especially around your period
• Shortness of breath
• Coughing up blood
• Shoulder or neck pain (referred pain)
• A crackling sensation in the chest
• Dizziness or fatigue

Many individuals report feeling “tightness” in their chest during menstruation or ovulation.

Collapsed lung episodes (pneumothorax) typically occur within 72 hours of the start of a period, though not necessarily every month, making diagnosis tricky.

Because these symptoms can mimic other health emergencies (like heart attacks or blood clots), thoracic endometriosis is often misdiagnosed or overlooked.

How Doctors Diagnose Thoracic Endometriosis

Diagnosing thoracic endometriosis often begins with documenting symptoms and linking them to the menstrual cycle.

Common diagnostic steps include:

• Chest X-rays and CT scans to detect air, blood, or lung nodules
• MRI scans to view soft tissue in more detail
• Video-Assisted Thoracoscopic Surgery (VATS) to directly see and biopsy tissue in the chest cavity
• Bronchoscopy or thoracoscopy to examine inside the lungs

Since TES is rare, it’s important to advocate for yourself and work with providers experienced in endometriosis and thoracic conditions.

Treatment Options for Thoracic Endometriosis

Treating thoracic endometriosis typically involves a combined approach:

• Surgical management through VATS to remove thoracic lesions
• Simultaneous laparoscopic excision surgery for pelvic endometriosis
• Hormonal therapy after surgery to suppress ovulation and reduce recurrence

Having a multidisciplinary surgical team — usually a thoracic surgeon and a gynecologic excision specialist — is crucial for complete and effective treatment.

Hormonal medications may include birth control pills, GnRH agonists, or progestins to help reduce symptom recurrence post-surgery.

While there’s currently no cure, appropriate treatment can dramatically improve quality of life.

Living With Thoracic Endometriosis

Living with thoracic endometriosis can be physically and emotionally exhausting.

Many people experience delays in diagnosis, repeated hospital visits, and the need to advocate hard for proper care.

If you suspect thoracic endometriosis — especially if you have a history of pelvic endometriosis — trust your instincts.

Document your symptoms, especially how they connect to your cycle, and seek care from providers familiar with thoracic presentations of endometriosis.

You are not alone — support and expert care make a difference.

You Deserve to Be Heard 💛

Thoracic endometriosis may be rare, but your symptoms are real and valid.

At Endometriosis Alliance, we believe no one should face this journey alone.

Find education, support, and community with people who understand exactly what you’re going through.