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 irritation of the diaphragm.
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 a menstrual period. In rare cases, the condition can cause cyclic pneumothorax, which is the collapse of a lung linked to menstrual cycles.
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, movement of the muscle can cause pain or feel restricted. This may lead to discomfort when taking deep breaths and, in some cases, a sensation of 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, there are several diagnostic methods that can help reach 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 diaphragm surface, indicating that there also may be lesions hiding behind the liver, which shares surfaces 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 computerized tomography (CT) and chest X-ray may offer between 78 and 83% sensitivity to diagnose 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 and thereby provide symptomatic relief and prevent a 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.
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.