Thoracic Endometriosis: Understanding Symptoms, Diagnosis, and Treatment Options

For people living with endometriosis, pelvic pain, heavy periods, and infertility are often the center of concern. But for a small group of patients, endometriosis can also affect unexpected parts of the body—most notably, the lungs and the chest. This rare manifestation, called thoracic endometriosis syndrome (TES), can lead to puzzling and sometimes frightening symptoms like chest pain, shortness of breath, or even a collapsed lung that recurs along with menstrual cycles.

If you’re experiencing these symptoms, you might feel worried, confused, and can easily be dismissed by health professionals unfamiliar with the condition. Understanding thoracic endometriosis is essential—not just for clarity, but for finding the right treatment and support. Drawing from several recent case reports and clinical discussions, this article brings you the latest knowledge on TES: what signs to look for, how diagnosis is made, what treatments are working, and what to expect over time.

Why Does Endometriosis Sometimes Affect the Chest?

Although endometriosis most often affects organs in the pelvis, like the uterus, ovaries, bladder and bowel, it can appear nearly anywhere in the body. In the vast majority of cases it is confined to the pelvis . Next in line is the abdomen above the pelvis, including the diaphragm up over the liver. In rare cases endo can grow through the diaphragm, the membrane separating your chest from your abdomen, and grow inside the chest cavity or even inside the lungs themselves.

Researchers have found that thoracic endometriosis is actually the most common extra-pelvic (outside the pelvis) form of this disease, even though it is still very rare overall. The condition most often appears in women of reproductive age. The chest symptoms typically:

• Happen in sync with the menstrual cycle, usually just before or during periods
• Include chest pain, difficulty breathing (dyspnea), or in severe instances, a spontaneous pneumothorax (collapsed lung), or rarely, blood in the chest cavity (hemothorax)

Despite being strongly linked to menstruation, patients are often misdiagnosed, with symptoms attributed to anxiety, infection, or even viral illnesses. A consistent theme across case reports is the importance of recognizing these menstrual patterns and linking them to possible thoracic endometriosis.

Recognizing Thoracic Endometriosis: What Are the Symptoms?

The symptoms of TES can be quite varied, sometimes subtle, and easily mistaken for more common respiratory or cardiac issues. Several case reports agree the most characteristic features are cyclical chest complaints tied to menstruation. Symptoms may include:

• Sudden or recurring chest pain, often one-sided (typically right-side)
• Shortness of breath or trouble breathing, especially around periods
• Collapsed lung, often multiple times (catamenial pneumothorax)
• Rarely, coughing or spitting up blood (hemoptysis)
• Blood in the space around the lungs (hemothorax), or in the abdomen (hemoperitoneum)
• Symptoms that persist even after treatment of presumed infections

Notably, some patients have both thoracic and pelvic symptoms, but others may not realize the connection until diagnosis. Thoracic endometriosis is especially likely to be overlooked in patients without classic pelvic pain.

Diagnosing Thoracic Endometriosis: What Does the Evidence Show?

Diagnosis is often delayed; sometimes for years. Studies highlight several challenges:

• Imaging (CT scans, X-rays) may show lung collapse or abnormal fluid, but rarely pinpoint endometriosis
• Symptoms are often mistaken for more common problems, prolonging the time before correct diagnosis
• The most definitive diagnosis requires surgical exploration—usually with video-assisted thoracoscopic surgery (VATS), sometimes combined with laparoscopy—to visually identify endometriotic lesions in the chest or on the diaphragm. Histological confirmation (looking for endometriosis tissue under a microscope) may help, but is not always possible.

In one recent publication, delayed recognition led to years of mismanagement, repeated hospitalizations, and significant psychosocial distress for the patient. Several reports noted that women with a history of pelvic endometriosis, who then develop cyclical chest complaints, should be evaluated for possible thoracic involvement.

Treatment Options: Combining Surgery and Hormonal Therapy

Most evidence, while drawn from case reports due to the condition’s rarity, supports a combined approach to treatment:

Surgical Intervention

Research consistently shows that surgery plays a major role, both for diagnosis and symptom control:

• Video-assisted thoracoscopic surgery (VATS) allows doctors to see and remove abnormal endometriosis tissue in the lungs and on the chest side of the diaphragm, repair fenestrations (holes), and perform pleurodesis (sealing the lung lining to prevent further collapse).
• At times, surgeons also use a mesh graft to reinforce diaphragm repairs.
• For patients with both abdominal-pelvic and thoracic disease, a combined abdominothoracic approach may be needed, involving both gynecologic and thoracic surgical teams. To set this up properly, a through imaging workup is very important.

Surgery has led to recurrence-free outcomes for several years in some patients, according to case studies, but is not always a permanent cure—especially in more widespread disease.

Hormonal Therapy

Most patients benefit from post-operative hormonal therapy, which aims to suppress ovulation and minimize the cyclical hormonal stimulus fueling endometriosis growth.

• GnRH analogues and progestogens (such as Dienogest or bioidentical progesterone) are commonly prescribed.
• Not all patients can tolerate hormonal therapy, and some may experience side effects or contraindications.

The evidence suggests that combining surgery with ongoing hormonal suppression gives the best chance for long-term control and reducing recurrence. Women who cannot tolerate hormonal therapy will need their treatment plan adjusted accordingly. If all visible disease remove, a watchful waiting option can be chosen rather than using hormonal suppression.

Who Benefits Most, and What Influences Outcomes?

All five reports agree that a multidisciplinary approach, involving endometriosis surgeon, thoracic surgery, and supportive care, is critical for best outcomes.

• Patients who receive care from both endometriosis and thoracic specialists—even in the same procedure—often see the most durable relief from symptoms.
• Early and accurate diagnosis (especially in patients with known endometriosis and new chest symptoms) is linked to shorter disease duration and less disability.
• Recovery is possible even after multiple recurrences, but patients may require more than one surgical intervention.

Unfortunately, in rare severe cases, even after surgery and several rounds of hormone therapy, symptoms can continue. This underscores both the complexity of TES and the need for individualized, ongoing care.

What About Side Effects or Complications?

Case reports highlight several key considerations:

• Surgery carries the usual risks of infection, bleeding, and complications specific to chest procedures. Even minimally invasive VATS can be a lot more painful than abdominal-pelvic MIGS procedures. So, surgery risks and benefits are essential to weight carefully. It is easy to get not enough or too much surgery in non-expert hands.
• Hormonal therapy can cause menopausal-like symptoms (hot flashes, mood changes, bone density loss with some medications)
• Persistent or recurrent symptoms can be distressing, and the emotional toll should not be underestimated. One patient in a case report endured significant psychological strain due to repeated misdiagnosis and lack of coordinated care.

Discussing not only physical recovery but also emotional well-being is recommended in all cases.

Timeline: What Can Patients Expect?

Most patients experience noticeable symptom relief after surgery, often within days to weeks. With a combined approach that includes surgery and appropriate medical management, recurrence rates can be significantly reduced, and some individuals remain symptom-free for four years or longer. However, recurrence can still occur, particularly when treatment relies on surgery or hormonal therapy alone, or when hormone therapy is discontinued prematurely.

Practical Takeaways

If you have endometriosis and experience chest symptoms that worsen around your menstrual cycle, it is important to inform your doctor promptly. Pay close attention to new or worsening chest pain, unexplained shortness of breath, or recurrent lung issues, and note whether these symptoms occur in relation to your period. Although thoracic endometriosis is rare, it can be managed effectively with an experienced care team and an appropriate treatment plan.

Key questions to ask your doctor

• • Could my chest symptoms be related to endometriosis?
  • Should I see both an endometriosis expert and a thoracic surgeon?
  • What are the pros and cons of surgical versus hormonal treatments for me?
  • What can I expect for my recovery—and what are the chances my symptoms will come back?
  • How can I address the emotional impact of chronic or recurrent symptoms?

What We Still Don’t Know

Due to the rarity of thoracic endometriosis, most evidence comes from individual case reports rather than large clinical studies. This means:

• Not all patients respond the same way—the course of disease, response to surgery, and tolerability of hormonal therapy can differ greatly.
• We don’t know exactly why some patients develop thoracic involvement or why the lungs and diaphragm are affected in certain cases.
• Long-term recurrence rates and the best combination of interventions still need more study.
• Standardized diagnostic pathways and broader clinician education are needed to reduce delays in recognition.

The bottom line: If you are living with endometriosis and develop chest symptoms—especially those linked to your menstrual cycle—know that you are not alone, and that effective treatments exist. A team-based approach, open communication with your healthcare providers, and awareness of rare presentations can make a real difference in your journey toward relief.