Even after spending nearly a week in the ICU, when I told doctors I thought I had thoracic endometriosis due to having recurrent pneumomediastinums (the presence of abnormal air in the chest cavity between the lungs) that only occurred during my periods, they dismissed me. Instead, I was called a “medical mystery” and was told, “It’s definitely not thoracic endometriosis.” When I was sent home from the ICU, I was told I was “one-of-one” and was assured that recurrent pneumomediastinums were so rare it wouldn’t happen again (spoiler alert: it did, exactly one month later). I even had an ICU doctor blame my symptoms on PTSD because somehow that made more sense than endometriosis for why I had unexplained air outside of my lungs. Countless other doctors and medical professionals told me similar versions of the same story: your symptoms aren’t “real.”
After more than ten years of fighting for a diagnosis, I met with Dr. Shanti Mohling, an endometriosis and pelvic surgery specialist at the forefront of diagnosing and treating thoracic endo. Rather than dismissing the relationship between my symptoms and my menstrual cycle, she immediately recognized the pattern. Years later, we met again, but this time I wasn’t looking for treatment; I was looking for insight to share so others might have a clearer and less traumatic path to a diagnosis.
As Dr. Mohling explained during our interview, “presenting factors that should make everyone think of thoracic endometriosis are catamenial [relating to or happening during menstruation] pneumothorax or pneumomediastinum."
She was the first physician who believed my experience instead of explaining it away. She also helped me understand that thoracic endometriosis is likely far more common than many clinicians realize because patients often present with symptoms that fall outside the textbook description. Rib pain, back pain, shortness of breath, chronic nausea, palpitations, and even symptoms mistaken for gallbladder disease or GERD can all originate from thoracic or diaphragmatic endometriosis. For me, it was even more difficult to receive my diagnosis of thoracic endometriosis, as there is very little literature on pneumomediastinum being a sign of endometriosis—particularly in comparison to literature on endometriosis causing pneumothorax, which is more heavily documented.
So, What Exactly Is Thoracic Endometriosis?
Thoracic endometriosis occurs when endometrial-like tissue grows in or around the lungs, diaphragm, or chest cavity. The condition most often occurs on the right side of the chest, though left-sided or bilateral involvement can occur. While thoracic endometriosis is often described as "rare," many specialists now believe it is underdiagnosed rather than uncommon, with patients frequently presenting with symptoms that fall outside the classic descriptions found in medical literature.
However, symptoms often overlap with more common cardiopulmonary conditions, and many clinicians are unfamiliar with the disease or unaware that endometriosis can exist outside the pelvis. This is why understanding thoracic endometriosis and how to advocate for proper care is so important. Despite what I’ve been told by so many practitioners in the past, I know I’m not alone in my experience. A better understanding of thoracic endometriosis, in addition to patient-centered and trauma-informed care, is crucial for improving outcomes and quality of life for those of us living with thoracic endometriosis.
Symptoms of thoracic endometriosis often follow a cyclical pattern, occurring around menstruation. This timing is a key diagnostic clue but is frequently overlooked. According to Dr. Mohling, “there are a lot of outlying symptoms we don’t normally think of that get misdiagnosed.” Many thoracic endo symptoms that she sees are in fact not the classic catamenial pneumothorax, coughing up blood, or shoulder pain. More commonly, Dr. Mohling sees symptoms that are not defined in the general literature, including chronic and cyclical nausea and vomiting, gastritis, chest and/or back pain, shortness of breath, upper abdominal or rib pain, and palpitations if lesions are over the pericardial region.
Like myself, many thoracic endo patients also have classic pelvic endometriosis symptoms, such as painful periods, chronic pelvic pain, pain with sex, infertility, and bowel and bladder symptoms, but others may have minimal or no pelvic pain at all. Because symptoms of thoracic endo can mimic anxiety, asthma, pulmonary embolism, or spontaneous pneumothorax (or, in my case, spontaneous pneumomediastinum) with “unknown cause,” patients are often misdiagnosed or told their symptoms are unrelated to their menstrual cycle.
Why Is Diagnosis So Difficult?
The average delay in diagnosing endometriosis is already estimated at 7–10 years; thoracic endometriosis often takes even longer. Key barriers to diagnosis include a general lack of awareness among emergency department physicians, pulmonologists, and even gynecologists, normal imaging between symptomatic episodes, dismissal of cyclical symptoms as coincidental, fragmented care, with chest symptoms treated separately from gynecologic concerns, and an overreliance on hormonal birth control without a definitive diagnosis.
Standard imaging, such as chest X-rays and CT scans, may show abnormalities only during acute episodes. MRI of the diaphragm or chest, timed with the menstrual cycle, may increase detection but is still imperfect. In fact, despite having endometriosis lesions removed from my thoracic cavity during surgery, not a single one of my X-rays, CT scans, or MRIs ever showed evidence of thoracic endometriosis. As Dr. Mohling explained, "There's a possibility that it shows up, but sometimes it doesn't, even during a menstrual cycle." This limitation means that normal imaging should not rule out thoracic endometriosis when a patient's history strongly suggests the disease.
The gold standard for diagnosis is surgical visualization and biopsy, typically via video-assisted thoracoscopic surgery (VATS), sometimes combined with laparoscopic evaluation of the pelvis and diaphragm. The problem here, however, is that many insurance companies will not cover surgery if imaging comes back normal. Add a general misunderstanding and lack of knowledge around thoracic endometriosis, and it becomes incredibly difficult to receive proper diagnosis and treatment. Even among specialists, multidisciplinary collaboration is still developing. As Dr. Mohling noted, "Education needs to happen more with cardio-thoracic surgeons." She also emphasized that caring for these patients requires physicians to reach beyond traditional specialty boundaries, explaining that it is "incumbent on the practitioner to have the bravery to say, ‘hey cardiothoracic surgeon, I have this thing that I need your help on’ and open the door to that conversation of collaborating across specialties” because managing thoracic endometriosis cannot be done by gynecologists alone.
Treatment Options
Treatment for thoracic endometriosis depends on symptom severity, reproductive goals, and extent of disease. Most patients require a multidisciplinary approach, often involving gynecology, thoracic surgery, pulmonology, and pain management. Endometriosis is a chronic, whole-body inflammatory disease, not merely a menstrual issue, and for patients with less common forms of endometriosis, having doctors who fully understand this is critical. This broader understanding is becoming increasingly important. As Dr. Mohling explained, "More and more, we are discovering that this is a systemic, full-body disease," noting that many patients also experience conditions associated with chronic inflammation. She argues that treatment must extend beyond surgery and hormonal suppression alone by addressing the underlying inflammatory processes that contribute to the severity of symptoms.
Currently, the most common medical management for thoracic endometriosis includes hormonal suppression (e.g., continuous oral contraceptives, progestins, GnRH agonists or antagonists), pain management strategies, and menstrual suppression to reduce cyclical symptoms.
You might be thinking those don’t seem like great options. And you’re right. While hormonal therapies can reduce symptoms, they do not remove existing lesions and are often insufficient alone for thoracic disease. Furthermore, hormonal therapies can have significant negative side effects for many people. Like many, oral contraceptives were not an option for me because of the serious adverse effects. An IUD suppressed my period for many years, yet my symptoms became increasingly worse, to a point where conventional pain management strategies weren’t enough.
At some point, surgical treatment is often necessary, especially in cases of recurrent pneumothorax or significant chest involvement. Excision by surgeons experienced in endometriosis is associated with better long-term outcomes than ablation or incomplete treatment. Furthermore, VATS are already highly specialized surgeries that, for thoracic endo patients, must also be performed by someone who truly understands endometriosis excision surgery.
For patients who do not have access to an experienced excision surgeon, Dr. Mohling recommends asking their gynecologist to perform a complete evaluation of the upper abdomen and diaphragm during surgery and to document those findings with photographs. Because diaphragmatic disease can easily be missed if surgeons focus only on the pelvis, intentionally examining these areas may help identify thoracic involvement earlier.
Navigating the Healthcare System and Advocating for Care
Unfortunately, many patients learn that simply describing our pain is often not enough to receive an appropriate workup. Dr. Mohling acknowledges this difficult reality, explaining that many people minimize how much they are suffering because they have learned to function despite chronic pain. She encourages patients to keep detailed symptom journals documenting the day-to-day impact of their symptoms and, when necessary, to be persistent in requesting additional evaluation. At the same time, she emphasizes that "it shouldn't be the onus of the patient to scream louder to get a workup" or to be believed, but that “sometimes we have to overdramatize to be heard.”
While treatment options are limited, an often large barrier to treatment is simply being believed and having symptoms taken seriously by providers. Several strategies helped me navigate diagnosis and care, despite persistent medical trauma and gaslighting. I tracked symptoms carefully, keeping a detailed log of chest pain, breathing issues, and their relationship to my menstrual cycle. Evidence of this pattern can be critical in prompting further evaluation. I also used specific language, making sure to mention “cyclical chest pain” and “symptoms worsening with menstruation” when speaking with providers. I requested a multidisciplinary evaluation, asking for collaboration between gynecology and thoracic surgery. I sought out an endometriosis specialist because general OB-GYNs are not often trained in extrapelvic disease, though I recognize there is a significant privilege in being able to do so, as many specialists are not covered by insurance. Endometriosis excision specialists are also more likely to recognize thoracic involvement. Lastly, I brought records to all my appointments and advocated assertively, even when being told I was wrong. While patients should not have to “prove” their pain or wait for life-threatening events to be taken seriously, having documentation of repeated ER visits, lung collapses, or unexplained chest symptoms can significantly help lead to a diagnosis.
During my first endometriosis excision surgery, Dr. Mohling collaborated with a surgeon who specializes in VATS. Unsurprisingly, they found endometriosis in my abdominal and thoracic cavities. This, after more than a decade of medical trauma and gaslighting.
Living With Thoracic Endometriosis
Thoracic endometriosis is physically and emotionally exhausting. Many of us experience anxiety related to breathing symptoms, trauma from emergency medical events, and frustration with delayed diagnosis. Support from knowledgeable providers and validation of the patient’s experience are critical components of care. With proper diagnosis and successful surgical treatment, many individuals experience significant symptom improvement and regain quality of life.
Continued research, education, and awareness are essential to reduce diagnostic delays and improve outcomes for those living with this complex condition. Encouragingly, research into improved diagnostics continues to evolve. Dr. Mohling, for one, shared that she is working with a researcher in California exploring potential blood-based biomarkers for endometriosis, although those advances are still several years away from routine clinical use. Until then, increasing awareness among clinicians and recognizing cyclical symptoms remain the most important tools for shortening the long diagnostic journey that so many patients continue to endure.
