I’ve read bits and pieces here and there that Endometriosis can grow on or inside of your lungs. An EndoSister had posted in one of the many Facebook support groups that I follow that she has Endo on her lungs, which causes her to cough up a lot of blood. Others replied that they have it as well, but it leaves them in the hospital with collapsed lungs every month. Which got my juices flowin’ to find the documented cases of Endometriosis on the lungs, how it was excised (if at all), etc. Here goes! This is NOT meant to scare you. Just educate us all, including myself.
Endometriosis is usually found within the pelvic cavity, but has also been known to be found northward and latching onto the liver and diaphragm. It has also been found on the membranes surrounding the lungs and heart. Even rarer, it has been found on the brain, in the lymph nodes, and on the eyes.
Thoracic or Pulmonary Endometriosis is when Endometriosis implants/adhesions are found in your thoracic region, and can be found on your trachea, bronchi, diaphragm, lungs, or heart. It was first medically documented in 1953. Today, we focus on the lungs.
This CAN be fatal. If you suffer from these symptoms, or suffer from recurrent lung collapses, seek emergency medical attention. If you suspect you may have thoracic Endometriosis, please, I urge you to have a talk with your physician.
75% of women who have pulmonary Endometriosis suffer from catamenial pneumothorax, which can cause her lung(s) to collapse during her menstrual cycle (usually starts within 72 hours of her menstrual cycle beginning). Endometrial cells have implanted themselves along the lining of the lungs and when menstruating may cause air and blood to enter the lungs improperly, causing a collapse. Symptoms include stabbing pain, shortness of breath, dizziness, fatigue, neck pain, and a “pop” or “cracking” sensation. And, yet, some women have absolutely NO symptoms and it’s discovered by accident during surgery. It’s most common among 30-40 year old women with Endometriosis.
A 31-year-old woman had a prior medical history of iron deficiency anemia and several months of acute bronchitis went to the ER due to shortness of breath that had been progressively worsening. A chest x-ray showed her right lung had collapsed and filled with fluid. They drained her lung with a chest tube, but due to complications nearly two weeks later, she returned for VATS surgery. During the surgery, endometrial lesions were found along the lobes of her right lung, which were removed. At the time this publication was written, she had one period since surgery, with no recurrence of the collapsed lung; however, she did complain of right-sided chest pain during her period. She had since started oral contraceptives.
A 32-year-old woman had chest pain and shortness of breath for the past two months. Now with the onset of right abdominal pain for two days, she was admitted into the hospital. An ultrasound showed an endometrioma and fibroids. A chest x-ray showed a collapsed right lung. She received a chest tube and fluid was drained. Prior to being discharged from the hospital, the fibroids and endometrioma were surgically removed, and she hadn’t had any recurrence of symptoms two months later.
A 35-year-old woman with a history of a prior lung collapse went to the emergency room because she was having chest pain and shortness of breath. She had a known history of Endometriosis and infertility, as well as a collapsed lung two years prior. She was not on her period. It was discovered that she had a collapsed right lung and was sent in for VATS surgery. Bluish-brown lesions were found her her pleura and diaphragm, which were all resected, removed, biopsied, and confirmed to be Endometriosis. As of one year later, she had not had any recurrence.
A 36-year-old woman had gone to the emergency room because of abdominal pain, chest pain, shortness of breath and feeling faint. It was the second day of her period. She had a long-standing history of anemia, infertility, and a surgical Endometriosis diagnosis. The ER did some imaging studies, found fluid in her pleural cavity, and drained it – taking one litre of fluid! She also had some fluid in her abdomen. While at the ER, she collapsed and was rushed to surgery – they found blood clots in her pleural cavity, as well as suspected Endometriosis inside her lungs and on her diaphragm. They observed the blood was slowly leaking from the lesions…the lesions were cauterized (boo) and a portion of her lungs was resected. Biopsy confirmed Endometriosis and three months after her surgery, she still had not had a repeat collapse. She was referred to a gynecologist for future care.
A 43-year-old woman who had had ablation surgery for Endometriosis several years and who took Provera woke up one night due to sudden pain in the right side of her chest. Three hours later she was having trouble breathing. So she sought medical care. She was found to have fluid buildup along her right lung, which was drained via a needle procedure. A day later, she started her period and six days later underwent VATS surgery to remove a hematoma and more fluid buildup. The biopsy of tissues revealed chronic inflammation.
A 47-year-old woman went to the ER complaining of right flank pain, dizziness, and sweating. Testing showed she had fluid in lining of her lungs and she underwent VATS surgery. Tissue that was removed was biopsied and found to be Endometriosis. After surgery, she went on hormonal suppression (didn’t disclose if birth control or other) and has not had a recurrence of symptoms.
A 20-year-old woman went to a clinic because she had been coughing up blood. A month later, it happened again and she went to the hospital. A month later, again. Two weeks after her period, she was admitted for further studies, but her symptoms had ceased. Two years prior, she had undergone an abortion and had since taken contraceptive pills – then her coughing started about a month after she stopped taking the pill. Birth control pills were once more prescribed to her, but she did not take them and continued to cough up blood. Six months after her initial clinical visit, she underwent surgery and the biopsied tissue from her lungs tested positive for Endometriosis. While inside, her surgeons also found blood within her lungs. They removed what they could and she was symptom-free at least four months after her surgery, without going back on the pill.
A 37-year-old woman was admitted for treatment in 2010 for shortness of breath, chest pain, and coughing, which would usually come about during her period. She had previously been diagnosed with Endometriosis and had always suffered from painful periods and sex. Her mom, sister, aunt, cousin, and grandmother all also had Endometriosis (whew!). Also, her current complaints breathing issues had been an ongoing issue, but blood and hormone tests yielded no answers. She had several imaging studies (x-ray and CT) on her lungs, as well as an abdominal examination. Her pelvic examination and ultrasound were painful, and her CA-125 levels were elevated. They suspected a return of her Endometriosis. A secondary CT scan of her chest cavity led to the further suspicion of the presence of Endometriosis lesions in her pleural cavity. VATS surgery was performed and the lesions were excised. Biopsy confirmed the lesions were Endometriosis – and she was diagnosed with pulmonary Endometriosis…which vindicated all of her prior chest complaints.
In March of 2018, a study was published in BMJ Case Reports. A 34-year-old woman had complained of shortness of breath for the past year, as well as rectal and vaginal bleeding, and a mass in her abdomen. Imaging studies revealed a partial pneumothorax and a lesion along the pleural cavity. The lung collapse was repaired and a VATS surgyer was performed. The lesion was biopsied and came back as Endometriosis.
Imagine being 14 years old and enduring multiple lung collapses and not knowing why. Well, one unlucky teenager did. A 2018 study reviewed the case of a 14-year-old girl who had suffered from nine…yes…NINE…collapsed lungs over a two year period. The first visit to the hospital, she complained of chest pain and difficulty breathing, but her vitals were normal and she “was in no acute respiratory distress.” CT imaging was normal, other than the moderate collapse. She was treated with a tube to drain fluid from her lung. As the years progressed, two of her lung collapses were on her right lung and the remaining seven affected her left lung. Five of them occurred while she was on her period and four occurred after her period had ended. She underwent a VATS surgery, but nothing abnormal was found. Due to the timing of her periods and her pain, she was referred to gynecology for suspected thoracic Endometriosis. She was placed on hormonal therapy and her lung collapses ceased to occur, even three years later. Even though the Endometriosis lesions were not visualized, she was given a clinical diagnosis of thoracic Endometriosis.
A 30-year-old nurse from Nigeria complained of chest pain and had an x-ray done. It showed a collapsed lung filled with both air and fluid; she received a chest tube to drain the fluids. A subsequent CT scan showed nodules in her pleural lining and they suspected Tuberculosis. A VATS surgery was done and a biopsy came back as endometriosis and she was prescribed birth control pills. She suffered two more similar collapsed lungs during two subsequent periods. Another VATS surgery was performed, which discovered more lesions and “small perforations of the diaphragm.” She treated with a GnRH analogue to prevent her periods. The study does not mention her prognosis or well-being after the GnRH treatment.
Even post-menopausal women can still suffer from Endometriosis-induced collapsed lungs. Never let a doctor convince you that Endometriosis “disappears completely” after menopause. A May 2020 study in the General Thoracic and Cardiovascular Surgery journal was of a 51-year-old woman who presented with chest pains and difficulty breathing. The chest x-ray revealed a collapsed left lung. Her lung was drained of fluid for seven days in the hospital and she was released. Nine days later: she returned with another collapsed lung. She was admitted to the hospital, the chest tube was reinserted, and surgery was planned. Three days later, she underwent a VATS procedure and they discovered a bleb (section of air between lung and lining) on her left lung, as well as “blueberry spots” on her left diaphragm. The spots were removed, and the section of blebbed (I have no idea if that’s how I’m supposed to say it, but it made me giggle) lung was removed. The lung tissue was confirmed as Endometriosis, but the blueberry spots from the diaphragm were not.
Not all women who have catamenial pneumothorax (lung collapses on their period) suffer from Endometriosis in/on their lungs. A study published in the December 2016 issue of Current Thoracic Surgery found one woman who had recurrent lung collapses on her period, and subsequent surgeries for those collapses, did NOT have Endometriosis. She just had collapses during her cycle. She was placed on birth control and it helped stop the collapses. Not everything is Endo…Just one more reason why conversations with your doctors and thorough medical histories are so important.
10.7% of women who have pulmonary Endometriosis suffer from catamenial hemothorax and/or hemopneumothorax, which is a build up of blood (and sometimes air) in the pleural cavity , which is the space between our lungs and our chest cavity. During a menstrual cycle, that inflammation and blood of the Endo implants cause pressure on the lungs, which can lead to shortness of breath, chest pain, clammy skin, low blood pressure, and rapid heartbeat.
In Taiwan in 2013, a 49-year-old woman went to the doctor due to chest tightness for the past week, including shortness of breath and headaches. She had no history of illness or painful periods. Prior ER visits found nothing wrong. A physical examination revealed she had a right collapsed lung. For the past three years, she did have a history of spontaneous pneumothoraxes. The first and second time, her lung was drained of fluid and she was sent home. This time a thoracic surgeon resected and biopsied a portion of her right lung, found Endometriosis, and referred the woman to gynecological care. A physical exam and ultrasound of her pelvis came back normal. She underwent a laparoscopy and was found to only have Endometriosis lesions on her diaphragm. These were resected, biopsied, and a confirmed thoracic Endo diagnosis was achieved. There was no evidence of further pelvic Endometriosis. She did not undergo hormone treatment and was symptom-free five years later.
In 2018, a study was published about a 46-year-old woman who had a prior diagnosis of pelvic Endometriosis, as well as fibroids, had multiple visits to the hospital due to fluid build-up in her pleural cavity. In the past six months, she had complained of right-sided chest pain, difficulty breathing, and a cough. She had been given antibiotics and diagnosed with a possible case of pneumonia. When her symptoms did not resolve and appeared around her menstrual cycle, imaging studies were performed and found some abnormalities along her pleural lining. A thoracentesis was performed, which is a procedure to remove some fluid from the filled cavity and it was found to be dark, bloody fluid. They suspected some sort of chronic inflammation. She eventually underwent a VATS surgery and was found to have endometriosis lesions on her diaphragm. She was diagnosed with thoracic endometriosis and treated with birth control pills after the surgery. No follow-up results were published.
Another 2018 study is about a 33-year-old woman who went to her primary care physician because of several days of chest pain to her right side as well as difficulty breathing. She was previously diagnosed with Endometriosis and had been treating with birth control. An xray of her chest found she had fluid buildup in her right lung pleural cavity. It was presumed she had pneumonia and was given antibiotics. She received a referral to a pulmonologist and was admitted to the hospital. A CT angiogram confirmed the fluid in the right pleural cavity. A procedure known as a thoracentesis was performed and they removed 1,500 ccs of bloody fluid from her pleural cavity. That’s roughly 50 ounces! The biopsy tests were not alarming. In the following weeks, she had the procedure repeated multiple times to remove new fluid build-up. Finally, she had a thoracoscopy done to look inside her pleural and thoracic cavities. It all appeared normal, but a random biopsy of pleural lining was conducted. The biopsy came back as Endometriosis and she received her thoracic Endometriosis diagnosis. Unfortunately, the study does not discuss her subsequent treatment or how she fared afterward.
A 2019 study was of a 29-year-old woman who had a four-month history of coughing up blood while on her period. The first or second day after her period, she would cough up blood. At one instance, it was estimated she coughed up 5 ounces of blood (that’s a standard glass of wine)! She had no thoracic pain, no trouble breathing, no other cough, no fever. A CT scan showed fluid shadows on the lobe of her right lung and fibrous lesions on her left lung. She underwent thoracscopic wedge resection and they removed a small portion of her lung lobe. They discovered some lung adhesions, as well stagnant blood. A biopsy confirmed their suspicions of thoracic Endometriosis. She did not cough up anymore blood (follow-up was four months after the surgery).
Another 2019 study of a 37-year-old woman had a history of catamenial hemoptysis. Her surgeons scheduled her thoracoscopy around the time of her period, theoretically so the lesions were very visible. Inside, they noted that the pleura lining of her lungs near the lesion had turned a yellowish-hue. They excised all visible lesions and she remained symptom-free 2.5 years after surgery. The authors credit the CT-guided marking, the video-assisted thoracoscopy, and the timing of the surgery with her outstanding results.
8.5% of women who have pulmonary Endometriosis suffer from catamenial hemoptysis. This is when the Endometriosis implants/adhesions are found on the lung or lung nodules. This may cause the woman to cough up blood during her menstrual cycle, as well as cause back pain, a “bubbling sensation” in her chest, fatigue, and may obscure lung imaging studies during her menstrual cycle.
And yet some women with thoracic endometriosis suffer from collapsed lungs while not on their period. A 2019 publication in ATS Journals was of a 33-year-old woman who had recurrent collapsed lungs. A PT scan was negative for any masses or lesions around her lungs. She had a VATS surgery, where she underwent a resection due to adhesions, lesions, hemorrhagic deposits, and “tiny diaphragmatic holes.” Biopsy came back as endometriosis. Her diagnosis was a bit more challenging for thoracic endometriosis as her symptoms did not coincide with her period.
How does the Endometriosis get into the thoracic cavity and onto the lungs? Unfortunately, there are only theories: it spreads through the uterine veins into the venous system, it travels through the lymphatic system, we’re born with it there already, the prostaglandin (hormones) damage the lungs and pleural wall, it travels via the air circulated through the fallopian tubes, there are defects (holes) in a diaphragm which may allow the passage of these cells. The theories go on and on.
Regardless of how it actually gets to the lungs, many believe that the recurrent hormonal changes that the implants go through during a woman’s cycle may weaken the lung lining, or the lungs themselves, causing the pneumothorax and these issues to occur.
How is it diagnosed? Diagnoses may be delayed, and has been known to take as long as 8 months or more from the onset of symptoms until diagnosis. Imaging studies may rule out infection or malignancies, and may be helpful in supporting the suspicions of pulmonary Endometriosis. Just as surgery is the “golden standard” for diagnosing pelvic Endometriosis, VATS (video-assisted thoracoscopic surgery) is the “golden standard” for diagnosing thoracic Endometriosis. Some physicians may opt to perform a thoracoscopic and laparoscopic surgery at the same time to search the pelvic and thoracic cavities for Endometriosis.
But how is it removed? A procedure called a thoracoscopy is performed, and is very similar to a robotic laparoscopy. Small incisions are cut along the right of left sides of your upper torso, rather than your stomach. The little tiny instruments many of us EndoSisters have become familiar with are used in detecting, destroying, or excising Endometriosis in the thoracic cavity. Portions of the lung may also be removed/resected for biopsy. Drainage tubes may be present after surgery and remain during the healing process.
And treatment? It appears that thoracic Endometriosis and pelvic Endometriosis share the same treatment: hormones. It is believed that it is estrogen dependent. So Danzanol, progesterone, oral contraceptives, or GnRH treatments are used. Horrifyingly, I’ve read today that hysterectomies or removing the ovaries “is the treatment of last resort…” Can you imagine? Removing your lady bits for something that’s infected your lungs. I cannot. The horror. Especially when there has been no proof that a hysterectomy fully relieves your Endometriosis symptoms…Horror. In 2005, a 43-year-old woman received a hysterectomy, only to suffer a bilateral lung collapse in 2011. A thoracoscopy was then performed and Endometriosis implants were discovered and removed from her lungs and diaphragm. Again, I say : a hysterectomy is not a cure.
And one more thing we already knew: there is no cure. Whether it be on your lungs, your uterus, your bowels, your urinary tract, your diaphragm, your ovaries, or anywhere else it decides to sprout : there is no cure. But there will always be hope. And we are all in this together, regardless of the location of our Endo.
*Updated September 1, 2020*
American Journal of Respiratory and Critical Care Medicine – 2016 publication; Unusual Cause of Pneumothorax
American Journal of Respiratory and Critical Care Medicine – 2017 publication; A Different Kind of Premenstrual Syndrome
American Journal of Respiratory and Critical Care Medicine – 2017 publication; An Uncommon Cause of Hemopneumothorax in a Young Female: A Case Report
ATS Journals – 2017 publication; A Vicious Cycle: An Uncommon Presentation of Thoracic Endometriosis
American Journal of Respiratory and Critical Care Medicine – 2017 publication; Non Catamenial Endometriosis Related Pneumothorax
American Journal of Respiratory and Critical Care Medicine– 2017 publication; Thoracic Endometriosis Presenting as a Catamenial Hemopneumothorax
American Journal of Respiratory and Critical Care Medicine – 2018 publication; Catamenial Hemothorax a Rare Case of Recurrent Pleural Effusion
American Journal of Respiratory and Critical Care Medicine– 2018 publication; A 14 Year Old Female Adolescent with Recurrent Pneumothoraces
American Journal of Respiratory and Critical Care Medicine – 2019 publication; Recurrent Non-Catamenial Hemopneumothorax Secondary to Diaphragmatic and Pleural Endometriosis
American Journal of Respiratory and Critical Care Medicine – 2019 publication; Unusual Cause of Recurrent Hydropneumothorax in a Young Woman
BMJ Case Reports – 2018 abstract; Rare Case of Thoracic Endometriosis Presenting with Lung Nodules and Pneumothorax
European Journal of Medical Research – 2013 article; Endometriosis of the Lung: Report of a Case and Literature Review
General Thoracic & Cardiovascular Surgery – July 2019 abstract; Resection of Intra-Pulmonary Endometriosis by Video-Assisted Thoracoscopic Surery Under Pre-Operative CT-Guided Marking Synchronized with Menstrual Cycle
General Thoracic & Cardiovascular Surgery – May 2020 article; A Case of Thoracic Endometriosis-Related Pneumothorax in a Menopausal Woman
International Journal of Surgery Case Reports – 2017 article; A Case Report of Thoracic Endometriosis: a Rare Case of Haemothorax
International Society of Pleural Diseases – 2018 publication; Review Thoracic Endometriosis
Japanese Society of Internal Medicine – 2017 article; Pulmonary Endometriosis Which Probably Occurred through Hematogenous Metastasis after Artificial Abortion
Journal of International Medical Research – 2019 article; Case report of pulmonary endometriosis and review of the literature
Radiology Case Reports – 2017 article; Catamenial Pneumothorax Caused by Thoracic Endometriosis
Thai Journal of Obstetrics & Gynaecology – 2020 article; Pulmonary Endometriosis: A Case Report
Thorax 2008 article; Thoracic Endometriosis: Rare Presentation as a Solitary Pulmonary Nodule with Eccentric Cavitations
Journal of the Society of Laparoendoscopic Surgeons – 2003 abstract; Extraperitoneal endometriosis with catamenial pneumothoraces: a review of the literature
Journal of the Society of Laparoendoscopic Surgeons – 2012 article; Bilateral Thoracic Endometriosis Affecting the Lung and Diaphragm
Nederlands Tijdschrift Voor Geneeskunde – 2016 abstract; Thoracic endometriosis with a specific manifestation
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa