6 lung collapses and excruciating pain: How my mystery condition was finally diagnosed

One of the strange things about having a rare illness is that, for a long time before you ever receive a proper diagnosis, your mind is filled with thoughts of: "What if?" What if this pain is not just a figment of your imagination? What if this struggle is not sporadic, but actually cyclical and consistent? What if it’s not just a pulled muscle or bad cramps or a recurrence of your childhood asthma? What if that rare thing, once mentioned to you in passing as improbable, is actually real and true?

Five years after my chest pain first began, that was the case for me.

In 2021, after my second hospitalization and sixth lung collapse, I was diagnosed with thoracic endometriosis, a type of extrapelvic endometriosis where the disease affects the lung, pleura (lining of the chest) or the diaphragm. Research has shown that in about 80% of cases, thoracic endometriosis causes a collapse of the lung, otherwise known as a “catamenial pneumothorax.”

I first heard of the disease back in 2017 when my OB-GYN at the time mentioned it briefly during my annual exam. A few weeks before, I was rendered immobile on my bathroom floor due to shooting pains underneath my right breast and near my ribs. It felt like someone was stabbing me with a long rusty knife every time I took a breath. The only relief I found was to simply wait it out in bed, but I barely made it that far.

“That sounds like one of the side effects of thoracic endometriosis,” my doctor told me. “But that’s so rare. No one ever gets that.”

I kept her words in the back of my mind as those sharp stabbing pains occasionally bubbled up from time to time, around my monthly menstrual cycle. By early 2020, I had figured out a routine that shortened the length of pain. When it emerged, I’d pop some extra calcium pills. I also began group acupuncture sessions at a holistic wellness facility near me, and that often provided some temporary relief, too.

But temporary pain relief is no solution. That kind of pain relief is just deferral. And for many women, our mysterious pains are just a test of deferrals. How long can you pretend this pain is not here? How much pain can you endure and still go about your day? What even is pain when it is so familiar to you day to day? Pain, as a concept, is just something we deal with until we can’t simply deal with it anymore.

“There are a lot of gaps in women’s health, and a lot of it comes down to access to care, the cost to get treatment, and misinformation,” Dr. Azadeh Poursaid, an OB-GYN focusing on gynecological pain disorders, tells TODAY.com. “Why do some women have more pain during their periods and others don’t? If you have agonizing pain every month, do you have to deal with that?”

Eventually, my body had a reckoning. Isolated in the heart of the COVID-19 pandemic, I woke up one day with a random, scratchy cough at the bottom of my throat and excruciating pain on the right side of my chest. It was a different kind of pain than what I’d experienced before. I was able to do simple tasks in my apartment like go to the bathroom or eat food, but this new pain told me something was terribly wrong. I stayed indoors for five days thinking it was a cold or COVID, hoping it would go away. It never did. Later that week, what would have been a simple walk down the block to the corner coffee shop turned into sheer terror. It only took a few steps outside my front door to realize I could not keep going.

An hour later, I took an X-ray at a local urgent care facility and learned my right lung had collapsed. An hour after that, I was admitted to the hospital, where I would stay for another two days. But that experience was just the beginning of my questions. I was classified as having a “spontaneous pneumothorax,” meaning a spontaneous lung collapse.

Emergency room physicians and pulmonologists and rheumatologists visited me throughout that weekend with theories about my condition. Some brought along groups of medical students and interns deeply curious about what could have caused this collapse. Many doctors who had heard their colleagues speak about my condition stopped by as well with their own theories, running a battery of tests that proved inconclusive or negative. Soon, my lung reinflated with the help of a chest tube and I was discharged from the hospital.

But during that time, my mother, who recalled the rare condition my old OB-GYN once mentioned, suggested that thoracic endometriosis was the real culprit. It was around my period, the time in which those with thoracic endometriosis often suffer lung collapses. I presented other known symptoms, too, like that pain beneath my right breast by my rib cage, random coughing and a shortness of breath. For years, I had suffered a battery of other reproductive issues like fibroids and ovarian cysts. Who was to say this couldn’t be my condition?

But when I presented it as a potential answer to my doctors, I was dismissed.

Diaphragmatic endometriosis, an even rarer presentation of thoracic endometriosis, can cause pain in the rib cage, chest and shoulder blades. All were symptoms I had experienced since 2018, in addition to the lung collapse. Dr. Ken Sinervo, the medical director of the world-renowned Center for Endometriosis Care in Atlanta, tells TODAY.com that most gynecologists are dismissive of diaphragmatic endometriosis, claiming that it is “too rare” or they don’t know how it presents.

However, Sinervo adds, “One study estimated this to occur in about 1.5% of endometriosis patients, and it may seem like a small number, but when 10% of individuals have endometriosis, that works out to about 132,000 in the U.S. alone and around 2.8 million worldwide, so it is not a small number that have it.”

Unfortunately, it would take another four months, a second hospitalization, and five more known lung collapses before my medical team began to listen to me. And even then, there was a great amount of struggle.

One doctor said, “I’ve only ever read about this in my textbooks. I didn’t think people actually got this.”

Another said, “Even if you have this, there’s no known cure, so what can we do?”

This is not an uncommon experience. “Patients are often dismissed with painful periods and told that it is ‘normal’ to have pain during periods,” Sinervo adds. “This can lead to doctors not even wanting to make the diagnosis because there is little that they can do. Often treatments are dismissed because of the high recurrence rate."

In the months between that first and second hospitalization, I had pored through medical journals and online forums and Facebook groups reading about the struggles of people like myself who faced multiple hospitalizations and weren’t taken seriously regarding this disease. They described solutions from medical practitioners that were minimal or outdated (such as throwing drugs like Lupron at the condition and hoping it would just … disappear). Many had operated off of research conducted during George W. Bush’s first term in office.

With no known cure and little insight into what causes thoracic endometriosis or how to provide relief from it, it felt like many medical professionals simply didn’t care what happened to those who suffered from it. And women, who are often dismissed and belittled in general for their medical concerns, face an even greater uphill battle to make their understanding of their bodies acknowledged and treated with kindness and care.

My father visited me in the hospital every single weekday and after a few days of frustrating non-answers and isolation from my medical staff, I finally told him about how I was being treated while there. How no one would listen to my concerns. How the pulmonologist I was assigned upon being admitted didn’t think an MRI, the additional recommended screening for thoracic endometriosis, was necessary to assist in my diagnosis. How I was often only visited by a series of nurses during the day and not a physician. How my lung usually stayed inflated while he was there, but collapsed again at night when I was left frustrated and anxious over my treatment.

It was with my father’s urging that I requested new medical staff including a different pulmonologist, one who didn’t look at me with what felt like equal parts disgust and annoyance. It wasn’t a perfect solution, but it was one that seemed to provide some relief. Within a few days, I was scheduled for a pleurodesis, a procedure to remove the pleural space and stick my right lung to my chest wall to prevent recurrent lung collapses. I also had minor reconstructive work done with the hospital’s top lung surgeon to repair a hole detected in my lung. A few days after that, I was at home recovering.

When I advocated for myself, it seemed like everything else fell into place. I have not looked back since then. And while I am still gripped with the common shoulder pain of thoracic endometriosis, my condition is not being ignored. Right there along with “allergy to tree nuts” and “asthma” is “thoracic endometriosis” in my medical records. According to Yale Medicine, the average person may wait anywhere from 4-11 years to receive a diagnosis for pelvic endometriosis after symptom onset. For me, it only took four years, two hospitalizations, six lung collapses, major surgery and my own self-advocacy. More importantly, my lung has not collapsed in three years.

No one knows you but you. A physician may have your medical records or hear your concerns, but no one can truly understand what it is like to live in your body except for you. Only you can feel the pain, can know your fears and concerns, can recognize the changes within your body and act. And only you can be the best advocate for yourself.

Faced with a deluge of naysayers and outsiders, it is easy to think what you are experiencing is of no great importance. It is easy to think your life and your experiences and your thoughts are not worthy of a second glance. But that is how we slip through the cracks. That is how conditions worsen. That is how the pain becomes the ruler of our lives. And you owe it to yourself to nurture and fight for your entire being when others can’t or won’t. It may be a matter of life or death. Don’t take your struggles lightly. You deserve a full life.

This article was originally published on TODAY.com