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Thoracic endometriosis

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Created: 26/03/2025
Edited: 28/03/2025
Written by: Karolyn Judge

What is thoracic endometriosis?

Thoracic endometriosis is a condition where endometrial-like tissue, which normally lines the uterus, grows within the thoracic cavity. This can affect the lungs, pleura, diaphragm, or chest wall. Like endometriosis found in the pelvis, this tissue responds to hormonal changes during the menstrual cycle, leading to inflammation, bleeding and scarring. As a result, individuals may experience respiratory symptoms that are cyclical in nature, often coinciding with menstruation.

 

Shortness of breath is a symptom of thoracic endometriosis.

 

What are the symptoms of thoracic endometriosis?

Symptoms of thoracic endometriosis can vary depending on the structures affected. The most common presentation is catamenial pneumothorax, which is a recurrent lung collapse that typically occurs around menstruation.

Other symptoms include; 

  • chest pain;
  • shortness of breath; 
  • coughing up blood (haemoptysis), and;
  • shoulder pain.

Some individuals may also experience pleuritic pain, which worsens with deep breathing. In cases where diaphragmatic involvement is present, pain may radiate to the shoulder and upper abdomen. Symptoms may be subtle in the early stages, leading to delays in diagnosis.

Are there different types of thoracic endometriosis?

Thoracic endometriosis is classified into different categories based on the way it affects the thoracic cavity. The most recognised subtypes include:

  • catamenial pneumothorax; 
  • catamenial haemothorax; 
  • pulmonary endometriosis, and;
  • diaphragmatic endometriosis.

Catamenial pneumothorax involves lung collapse due to air entering the pleural space, while catamenial haemothorax results from bleeding into the pleural cavity.

Pulmonary endometriosis refers to endometrial-like tissue growth within lung tissue itself, leading to haemoptysis (coughing up blood).

Diaphragmatic endometriosis affects the diaphragm and can cause chronic pain, scarring, and adhesions.

 

Lady coughing, and has chest pain due to thoracic endometriosis.

 

What are the complications of thoracic endometriosis?

If left untreated, thoracic endometriosis can lead to serious complications. Recurrent pneumothorax can cause lung collapse, leading to difficulty breathing and a significant impact on quality of life. Chronic bleeding in the pleural cavity may result in pleural effusion or fibrosis, leading to reduced lung function. Severe cases of haemoptysis may cause airway obstruction or anaemia. The formation of adhesions and scarring can also contribute to long-term chest pain and respiratory issues.

In some cases, diaphragmatic involvement may lead to perforations or fenestrations in the diaphragm, allowing air or fluid to pass between the thoracic and abdominal cavities.

How is thoracic endometriosis diagnosed?

Diagnosing thoracic endometriosis can be challenging due to its non-specific symptoms and overlap with other respiratory conditions.

A thorough medical history, including the presence of cyclical respiratory symptoms linked to menstruation, is crucial for raising suspicion. Imaging techniques such as chest X-rays, CT scans, and MRI may be used to identify pleural abnormalities, nodules, or evidence of recurrent lung collapse.

However, in many cases, a definitive diagnosis requires video-assisted thoracoscopic surgery (VATS). This minimally invasive procedure allows direct visualisation of the thoracic cavity and enables the removal of suspicious tissue for biopsy confirmation.

Blood tests and hormonal assessments are not typically diagnostic but may be used to rule out other conditions.

How is thoracic endometriosis treated?

The treatment of thoracic endometriosis depends on the severity of symptoms, the extent of the disease, and the patient’s reproductive goals.

Hormonal therapy is often the first-line treatment and aims to suppress ovulation and reduce the cyclical activity of the endometrial-like tissue. Options include oral contraceptives, gonadotropin-releasing hormone (GnRH) agonists, and progestins.

While hormonal treatment can provide symptom relief, it does not eliminate existing lesions and symptoms may return once therapy is discontinued.

Surgical intervention is often required for cases that do not respond to medical therapy or where significant complications arise. Video-assisted thoracic surgery (VATS) is commonly used to remove endometrial implants, repair diaphragmatic defects, and address lung collapse.

In cases of severe diaphragmatic involvement, more extensive surgery may be required to resect affected portions of the diaphragm. Recurrence remains a challenge, and a multidisciplinary approach involving both thoracic surgeons and gynaecologists is essential to optimise treatment outcomes.

 

Woman having consultation for thoracic endometriosis.

 

Which specialist treats thoracic endometriosis?

Thoracic endometriosis requires a multidisciplinary approach involving both thoracic surgeons and gynaecologists with expertise in endometriosis. Thoracic surgeons are responsible for evaluating and managing lung and pleural involvement, often performing diagnostic procedures and surgical interventions such as VATS.

Gynaecologists play a crucial role in managing the underlying endometriosis, including hormonal therapy and assessing pelvic involvement. In specialised centres, a collaborative approach between these specialists ensures comprehensive care and reduces the risk of recurrence.

Early referral to an endometriosis specialist can significantly improve outcomes and help patients receive appropriate treatment in a timely manner.

Mr Francesco Di Chiara
Written in association with: Mr Francesco Di ChiaraConsultant thoracic surgeon in Oxford
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