July 5, 2021 | by Tamer Seckin, MD
Diaphragmatic endometriosis is a rare form of endometriosis in which endometrial-like tissue grows on or near the diaphragm, the muscle that separates the chest cavity from the abdominal cavity. This type of endometriosis can cause unique symptoms, often different from those linked to pelvic endometriosis. Some people experience chest pain, shoulder pain, or discomfort that worsens during menstruation. In certain cases, breathing difficulties or pain with deep breaths can occur due to diaphragm irritation.
The condition develops when endometrial-like cells implant on the diaphragm and respond to hormonal changes in the same way as tissue inside the uterus. This can lead to inflammation, scarring, and in some cases, small lesions or nodules on the diaphragm’s surface. Because these symptoms may mimic other conditions affecting the chest or lungs, diaphragmatic endometriosis is sometimes challenging to diagnose.
About the diaphragm
The diaphragm is a large, dome-shaped muscle located below the lungs. It separates the thoracic (chest) and abdominal cavities, and its involuntary contraction and relaxation allow us to breathe. The diaphragm has openings that allow important structures such as the esophagus and major blood vessels to pass through.
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Symptoms of diaphragmatic endometriosis
Symptoms of diaphragmatic endometriosis often differ from those of pelvic endometriosis because the lesions affect the upper abdominal and chest area. One of the most common signs is pain in the chest, shoulder, or upper abdomen that worsens during menstruation. This pain is often felt on the right side and may radiate to the neck or arm due to nerve connections in the diaphragm region.
Some individuals experience discomfort or shortness of breath when taking deep breaths, especially during menstruation. In rare cases, the condition can cause cyclic pneumothorax, a lung collapse linked to menstrual cycles.
Summary
Diaphragmatic endometriosis is a rare condition characterized by the growth of endometrial-like tissue on or near the diaphragm. This can lead to symptoms such as chest pain, shoulder pain, and breathing difficulties, particularly during menstruation. The condition can be challenging to diagnose due to its overlapping symptoms with other chest or lung issues.
Diagnosis typically involves a thorough medical history and physical examination, often supplemented by imaging techniques like MRI or laparoscopy. Treatment options may include hormonal therapies or surgical intervention to remove lesions, alongside lifestyle adjustments to manage symptoms effectively.
Can diaphragmatic endometriosis affect breathing?
Yes, diaphragmatic endometriosis can affect breathing, particularly during menstruation when the lesions become more active and inflamed. The diaphragm is essential for normal breathing, and when endometrial-like tissue develops on or near it, diaphragmatic muscle movement can cause pain or a feeling of restriction. This may lead to discomfort with deep breathing and, in some cases, shortness of breath.
The pain often occurs on one side, most commonly the right, and can radiate to the shoulder, neck, or upper back. In more severe situations, inflammation or scar tissue from the lesions can limit the diaphragm’s movement, making breathing feel shallow or uncomfortable. Rarely, diaphragmatic endometriosis can be linked to catamenial pneumothorax, a condition where the lung partially collapses during menstruation, which can further affect breathing.
Living with diaphragmatic endometriosis
Living with diaphragmatic endometriosis can be challenging, as the condition may cause pain in the chest, shoulder, or upper abdomen that worsens during menstruation. These symptoms can affect daily activities, making it difficult to exercise, work comfortably, or even take deep breaths without discomfort. Understanding personal symptom patterns and how they change throughout the menstrual cycle is an important step in managing the condition effectively.
Medical treatment often focuses on reducing inflammation, controlling hormone levels, and managing pain. This can include hormonal therapy to suppress the menstrual cycle or surgery to remove lesions in more severe cases. Alongside medical care, lifestyle adjustments such as following an anti-inflammatory diet, engaging in gentle physical activity, and practicing stress management techniques can help improve comfort and overall well-being.
Because diaphragmatic endometriosis can sometimes affect breathing or mimic other health problems, regular monitoring is essential. Staying informed, working closely with healthcare providers, and making gradual lifestyle changes can help maintain a better quality of life while living with this condition.
Diagnosis of diaphragmatic endometriosis
Since diaphragmatic endometriosis is rare and largely asymptomatic, diagnosis is quite difficult. Complicating the diagnosis is the low sensitivity of imaging techniques and relatively low levels of clinical suspicion by healthcare providers. However, several diagnostic methods can help make a diagnosis.
- Medical history and physical examination that takes into account the chest and pelvic pain and/or shortness of breath experienced by the patient during menstruation (catamenial chest pain), along with signs of tenderness during a pelvic or rectovaginal exam, can be indicative of diaphragmatic endometriosis.
- Inspection of the diaphragm by an endometriosis expert with laparoscopy can help diagnose diaphragmatic endometriosis. Laparoscopy can also reveal endometriosis lesions on the diaphragmatic surface, indicating that there may also be lesions hidden behind the liver, which shares a surface with the diaphragm on the right side. Only an experienced endometriosis surgeon can recognize these lesions.
- Magnetic resonance imaging (MRI), along with other imaging techniques such as computed tomography (CT) and chest X-ray, may offer between 78% and 83% sensitivity for diagnosing diaphragmatic endometriosis.
Treatment of diaphragmatic endometriosis
Some doctors may prescribe combined oral contraceptives (COCs), progestins, or gonadotropin-releasing hormone (GnRH) agonists to treat the symptoms of endometriosis. However, the use of COCs should be monitored since they have limited applicability and may cause disease progression due to estrogen dominance.
The aim of the treatment should be to remove the endometriotic lesions, thereby providing symptomatic relief and preventing recurrence. Laparoscopic excision surgery is the gold standard for the treatment of all types of endometriosis.
Patient story
Latia Lee is one of many patients who received a wrong diagnosis. When her pulmonologist finally suspected that her ‘killer cramps’, breathlessness, neck, chest, and shoulder pain could be due to endometriosis, Latia’s instincts led her to believe that these symptoms could be due to diaphragmatic endometriosis and catamenial pneumothorax.
Latia’s subsequent meeting with Dr. Seckin rekindled her hope. Read on to know how Dr. Seckin’s team performed two major surgeries close to one another with immaculate expertise and, in Latia’s own words, “gave her life back” after nearly 20 years of suffering.
FAQ
What is diaphragmatic endometriosis?
Diaphragmatic endometriosis is a rare form of endometriosis where endometrial-like tissue grows on or near the diaphragm — the dome-shaped muscle that separates the chest cavity from the abdominal cavity. Like pelvic endometriosis, this tissue responds to hormonal changes during the menstrual cycle, causing inflammation, scarring, and cyclical symptoms such as shoulder pain, chest pain, and breathing difficulties.
What are the symptoms of diaphragmatic endometriosis?
The most characteristic symptom is cyclical right-sided shoulder or chest pain that worsens during menstruation. This pain can radiate to the neck or arm due to nerve connections near the diaphragm. Other symptoms include shortness of breath, discomfort when taking deep breaths, and in rare cases, catamenial pneumothorax — a partial lung collapse linked to the menstrual cycle. Because these symptoms mimic respiratory or cardiovascular conditions, diaphragmatic endometriosis is frequently misdiagnosed for years.
How is diaphragmatic endometriosis diagnosed?
Diagnosis requires a combination of detailed medical history, physical examination, and imaging. MRI, CT scan, and chest X-ray can detect diaphragmatic lesions with 78–83% sensitivity. However, laparoscopy performed by an experienced endometriosis surgeon remains the gold standard — it allows direct visualization of the diaphragm surface and any lesions hiding behind the liver on the right side, which imaging often misses entirely.
Can diaphragmatic endometriosis cause a collapsed lung?
Yes. In rare cases, diaphragmatic endometriosis can cause catamenial pneumothorax — a condition where the lung partially collapses during menstruation. This occurs when endometriotic lesions cause air to leak from the lung into the pleural space. If a woman experiences recurrent pneumothorax that follows her menstrual cycle, diaphragmatic or thoracic endometriosis should be strongly suspected even if standard cardiovascular and respiratory tests appear normal.
What is the treatment for diaphragmatic endometriosis?
The most effective treatment is laparoscopic excision surgery, which removes endometriotic lesions from the diaphragm surface while preserving surrounding healthy tissue. Hormonal therapies such as combined oral contraceptives or GnRH agonists may temporarily suppress symptoms but do not remove existing lesions and are not a long-term solution. In complex cases involving the thoracic cavity, a dual compartment approach — combining laparoscopy with video-assisted thoracoscopic surgery (VATs) — may be necessary.
Is diaphragmatic endometriosis related to thoracic endometriosis?
Yes, they are closely related. Diaphragmatic endometriosis affects the diaphragm muscle itself, while thoracic endometriosis refers to lesions in the broader chest cavity, including the lungs, pleura, and pericardium. Up to 80% of patients with thoracic endometriosis also have pelvic or diaphragmatic lesions. At Seckin Endometriosis Center, both compartments are evaluated simultaneously when either condition is suspected.
Get a Second Opinion
Our endometriosis specialists are dedicated to providing patients with expert care. Whether you have been diagnosed or are looking to find a doctor, they are ready to help.Our office is located on 872 Fifth Avenue New York, NY 10065.
You may call us at (646) 960-3080 or have your case reviewed by clicking here.
Dr. Seckin is an endometriosis specialist and women’s reproductive health advocate. He has been in private practice for over 30 years at Lenox Hill Hospital with a team of highly skilled personnel.
Dr. Seckin specializes in advanced laparoscopic procedures and is recognized for his expertise in complex cases of deep infiltrating endometriosis of the pelvis. He is particularly dedicated to performing fertility-preserving surgeries on cases involving the ovaries.
He has developed patented surgical techniques, most notably the “Aqua Blue Excision” technique for a better visualization of endometriosis lesions. His surgical techniques are based on precision and microsurgery, emphasizing organ and fertility preservation, and adhesion and pain prevention.
Dr. Seckin is considered a pioneer and advocate in the field of endometriosis.