Would you recognize the signs if your lung suddenly collapsed?
That frightening scenario, known as spontaneous pneumothorax, can be a severe symptom of thoracic endometriosis —literally endometriosis that has snaked north of the pelvis, past the diaphragm and into the chest cavity. Once there, the endometrial lesions can enter the lungs and wreak havoc by creating pressure, or, even bleeding, as if it were in the womb during a menstrual cycle. Month after month, the endometrial tissue, responding to hormonal fluctuations, can cause recurring lung collapse, which is known as catamenial pneumothorax.
That nightmare became a reality for three women with endometriosis who were interviewed by The Blossom, and their stories are eerily similar: all women experienced collapses in their right lung only, during ovulation or their period.
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“I had no idea what it was,” recalls Zara Altbach of her first lung collapse in May 2015. “I was sitting on the couch with my husband, and I remember feeling a distinct shift. It felt like a pop, a shift, literally something had moved.” To date, Albach, an NYC-based online sales executive, says she has experienced at least six collapses—five partial, and the sixth, her last, a full collapse—all occurring around her ovulation.
Altbach says a few days after that first “shift” she developed a cough and went to her doctor. “He listened to my lungs, and he’s like, ‘You probably have bronchitis.’ He put me on cough syrup at first.” She unknowingly walked around and went to work with a partially collapsed lung for more than two weeks. “When I would try to walk, I would feel pain in my right side. In my back, in my right chest area.” Finally, a chest x-ray revealed that her right lung had collapsed down to 20 percent. Altbach’s repeat collapses continued to mystify her caretakers so much that The New York Times recently profiled her lengthy road to diagnosis, which culminated with her thoracic surgeon Dr. Bryon Patton and endometriosis excision specialist Dr. Tamer Seckin teaming up in the operating room in June 2017.
Both doctors labored during the 5-hour long procedure, with Seckin removing endometrial lesions and Patton working to refasten her lung to the pleural surface of her chest. A biopsy of her tissue taken from the right lung would reveal endometriosis was the culprit for her catamenial pneumothoraces, and she was diagnosed with Stage III Endometriosis.
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In hindsight, “What has been very prevalent for me is right shoulder blade pain, in my neck, shoulder area. My husband was constantly massaging it, and I thought it was because I was carrying all my bags on one side. Then I would say when it gets really bad, the burning comes in.”
Latia Lee, a registered nurse at Weill Cornell Medicine in NYC, knows that right-sided burning sensation all too well. Lee says she’s suffered at least four lung collapses between 2014-2017, all occurring on day two of her menses. “I’d have right-sided chest pain, chest tightness, shortness of breath, and I would getting a whopping migraine,” says Lee. “I would have the neck pain, the back pain, the scapula pain, and the arm pain.” And, she adds a seal-like “croupy” a cough. “I would also be tachycardic, which mean I’d have a fast heart rate. Literally walking to the bathroom, I would just feel short of breath, and my heart rate would be in the hundreds, high hundreds, just from taking a walk.” Like Altbach, diagnosis also eluded Lee until she underwent a January 2017 endometriosis excision surgery with Seckin and thoracic surgeon Dr. Christos Stavropoulos. Soon after, Lee was diagnosed with Stage IV Endometriosis.
Kenyan TV personality Njambi Kokai has suffered through 12 lung collapses. After journeying 8,000 miles to America, three surgeons, including an endometriosis specialist and a thoracic surgeon diagnosed her with Stage IV Endometriosis and catamenial pneumothorax with diaphragmatic endometriosis. She has since started a GoFundMe to help offset the $76,000 hospital bill. “Prior to being diagnosed, I had sharp pains in my right diaphragm and ribs that would move up to my shoulder. The pain would be so bad that I wouldn't even be able to lift anything,” says Kokai. “I would also have this persistent cough that would be so bad. I was not able to complete a conversation without coughing. There was also chest pain. There have been times I was rushed to the ER because I couldn't breathe.”
Catamenial pneumothorax is a medical anomaly. Few studies have been done on the disease and, just like endometriosis, it can take years to be diagnosed as women suffer month after month.
“In general, most thoracic surgeons don't deal with endometriosis,” says Dr. Christos Stavropoulos, who treated Lee. “Not because we have anything necessarily against it, but just because it's a predominately gyn or pelvic type of disease. And we were always focused on the chest.” Stavropoulos says he has operated on about 30 women with the condition within the last four years. If a woman has been diagnosed with endometriosis and is having chest pain, Stavropoulos says she should be proactive. “They should go to the ER or even schedule an outpatient chest x-ray because it can give us a good sense of a baseline of whether they're experiencing a pneumothorax or not.” A diary to record the pain is also helpful. “Maybe some of them are like, ‘Wow. This is really uncomfortable.’ But they're not to the point where they are short of breath or gasping for air. So, maybe it's just a small pneumothorax.” Even scarier? Just because a collapse hasn’t happened in an endo woman with cyclical chest pain, it doesn’t rule out that one won’t happen one day. “There are many [patients] that I have scanned that have this recurrent pain that has never had a pneumothorax, and their lung is completely inflated, and they're like, 'What is it?' And I'm just like, 'Welp. Somewhere, endo is rearing its ugly head.'"