Thoracic endometriosis is endometriosis that grows in the lungs or chest. It is an uncommon complication of this disease. Because it is rare, thoracic endometriosis is often misdiagnosed or diagnosed late.

Endometriosis causes uterine-like tissue to grow outside the uterus. It can occur in the lungs or chest, which is referred to as thoracic endometriosis.

Read on to learn more about this rare condition, how it’s diagnosed, and what treatment options may help.

Endometriosis is a common condition that affects at least 11% of reproductive-aged women in the U.S. It causes lesions, growths, and scar tissue to form in areas of the body outside the uterus. Common locations include the ovaries, fallopian tubes, bowels, and bladder.

While rare, patches of endometriosis sometimes form in the thorax (chest cavity). The thorax is located between your neck and stomach. It contains the lungs, heart, and other structures such as blood vessels. The diaphragm is situated directly underneath. Thoracic endometriosis can cause symptoms in any of these areas.

If you have thoracic endometriosis, you’re likely to have some symptoms of pelvic endometriosis. These include pelvic pain, low back pain, and severe menstrual cramps. You may also have difficulty getting pregnant.

In addition to these common symptoms, you may also have other symptoms in the thorax and other parts of the upper body. When these symptoms consistently occur right before or during your period, they’re referred to as catamenial.

Thoracic endometriosis symptoms include:

  • Shoulder pain: This pain is typically at the top of the right shoulder (shoulder tip) before or during your period.
  • Catamenial hemoptysis: This is coughing up blood or blood-stained mucus before or during your period.
  • Catamenial pneumothorax: This is an accumulation of air between your lungs and chest wall (pleural space) that occurs before or during your period. This condition is also referred to as a collapsed lung. It can cause symptoms like chest pain, trouble breathing, shortness of breath, and a rapid heart rate.
  • Catamenial hemothorax: This is an accumulation of blood between your lungs and rib cage. This can cause chest pain and shortness of breath that occurs before or during your period.
  • Pulmonary nodules: These benign (noncancerous) growths or masses grow in the lungs.
  • Catamenial plural effusion: Pleural effusion is a buildup of fluid around the lungs (water on the lung). It’s considered catamenial when it occurs before or during your period.

The exact cause of this condition is unknown. It’s thought that several underlying causes may coincide. Genetic factors may play a role, since endometriosis often runs in families. Problems within the immune system may also be a factor.

While unproven, several theories may explain why thoracic endometriosis occurs:

  • Retrograde menstruation: This leading theory suggests that during your period, an amount of menstrual blood flows backward through the fallopian tubes into the pelvis, instead of leaving the body through the vagina. This backward blood flow contains endometrial (uterine) tissues and cells. In women with thoracic endometriosis, the menstrual blood continues to flow upward into the abdomen, under the diaphragm. The cells adhere to the diaphragm and migrate into the chest cavity
  • Spread via the lymph system: Endometrial cells may also spread through the blood or lymph system into the lungs.
  • Triggered by estrogen: It’s possible that cells lining the chest cavity and abdomen are triggered by estrogen to turn into endometrial cells

Thoracic endometriosis is typically associated with long-term endometriosis. It’s more likely to be diagnosed in women who have had endometriosis for a while, rather than in younger women who have only had their periods for a few years.

This condition can be challenging to diagnose based on symptoms alone. Thoracic endometriosis symptoms are also associated with other conditions, such as pulmonary tuberculosis and respiratory or lung infections.

If your symptoms occur just before or during your period, let your doctor know. This is an important clue that may trigger the need for diagnostic testing.

Your healthcare professional will do a physical exam and take an oral history of your symptoms. They may also recommend imaging tests that include:

While helpful, imaging tests are not enough to make a definitive diagnosis.

To definitively diagnose thoracic endometriosis, your healthcare professional will recommend video-assisted thoracoscopic surgery (VATS) of the thorax and video laparoscopy of the diaphragm.

These minimally invasive surgical procedures are done under anesthesia. They’re also used to remove endometriosis lesions and scar tissue.

Treatment for thoracic endometriosis may involve medication, surgery, and other options. Here are the main treatment options:

Medication

Medications that suppress estrogen are first-line treatment for managing this condition. Your healthcare professional may recommend one or more of these medications:

  • gonadotropin-releasing hormone (GnRH) analogs
  • GnRH antagonists
  • oral contraceptives
  • progestins
  • danazol
  • aromatase inhibitors

Surgery

If medication is not enough to provide symptom relief, surgery may be recommended.

Thoracic endometriosis typically presents with endometrial patches in the diaphragm and thorax. Individuals with this condition may also have endometriosis in the pelvis or abdomen. If needed, one surgery that removes endometriosis from all of these areas may be performed. This procedure, done under general anesthesia, combines video laparoscopy of the pelvis and diaphragm with VATS.

During this procedure, your surgeon will make small incisions in your abdomen and chest cavity. Tiny video cameras will be threaded through the incisions. The images they capture will be viewed on a large computer screen. Your surgeon will look for lesions, adhesions, and scar tissue. These will be removed via ablation (heat) or excision (cutting).

In people with thoracic endometriosis who have a type of collapsed lung that occurs within 72 hours of the start of their menstrual cycle (catamenial pneumothorax) or who have a collection of blood within the chest cavity that develops within 72 hours of the start of their menstrual cycle (catamenial hemothorax), ablation may be performed using antibiotics such as tetracycline to scar the endometrial tissue and prevent these conditions from occurring.

Tissue samples will also be biopsied to confirm the diagnosis. Several surgeons may be on hand to perform various parts of the procedure. A gynecologic surgeon may perform the abdominal/pelvic laparoscopic portion, and a thoracic surgeon may perform the other parts.

When left untreated, thoracic endometriosis can significantly reduce quality of life. It can also cause serious complications, such as internal bleeding or a collapsed lung.

Treatments can significantly reduce the occurrence of complications, plus alleviate pain, respiratory distress, and other symptoms.

Thoracic endometriosis symptoms can begin in the days leading up to your period. They may also occur during menstruation. At that time, you may have trouble breathing, chest pain, and other symptoms.

Thoracic endometriosis is a rare condition. The symptoms it causes are usually associated with more common health issues. It also requires surgery to get a definitive diagnosis, which some people prefer not to undergo.

Unlike other lung conditions, thoracic endometriosis symptoms occur in sync with your menstrual cycle. If you have this condition, your symptoms will start or worsen when you are premenstrual or have your period.

Thoracic endometriosis is a rare complication of this common gynecologic disease. Individuals with thoracic endometriosis have endometrial patches or lesions in various parts of the chest cavity, such as the lungs and diaphragm.

Treatments such as hormonal medication are often enough to reduce symptoms. In some instances, surgical removal of endometriosis will be needed to reduce complications and improve quality of life.