For years, Anne Party experienced unexplained shortness of breath, chest tightness, and fatigue—symptoms that were chalked up to stress, asthma, or just being “run down.” It wasn’t until her lung collapsed that anyone looked deeper.
Even then, the answers didn’t come easily.
It took two surgeries, multiple doctors, and relentless advocacy before Anne was finally diagnosed with thoracic endometriosis—a rare but serious form of the disease that invades the diaphragm and chest cavity. Her journey from misdiagnosis to life-saving surgery is a story of persistence, partnership, and the importance of being believed.
What Anne’s Story Reveals About Thoracic Endometriosis and the Danger of Dismissal
In our Endo Exchange webinar, “Breathless & Misunderstood — Thoracic Endometriosis, Chest Pain & Collapsed Lungs,” Anne joined Dr. Karli Provost Goldstein and Dr. Christos Stavropoulos to shed light on a form of endometriosis few people—even providers—understand.
Her experience revealed what many endure silently:
- Thoracic endometriosis can lead to lung collapse, shoulder pain, and respiratory distress—yet it’s often misdiagnosed as anxiety or asthma.
- Even patients with a history of endo may be overlooked when symptoms present outside the pelvis.
- Collaborative care between gynecologic and thoracic surgeons is critical to proper diagnosis and treatment.
- You can feel “fine” and still have a serious disease.
When Something Feels Off—But No One’s Listening
Anne’s symptoms weren’t textbook. She didn’t have dramatic chest or shoulder pain or frequent ER visits. She simply felt off—short of breath while walking the dog, winded climbing subway stairs, unusually fatigued during everyday activity.
A year earlier, she had undergone two surgeries for pelvic endometriosis, including one involving her ureters and kidneys. But even after multiple procedures, her pelvic pain persisted—and no one connected the dots between her gynecologic history and her emerging respiratory symptoms.
“I just thought I was out of shape,” Anne recalled. “I didn’t realize my lung had collapsed.”
A Missed Diagnosis, A Collapsed Lung, and a Turning Point
It wasn’t until Anne saw Dr. Karli Provost Goldstein—a specialist in complex endometriosis cases—that things changed. As part of her standard intake process, Dr. Goldstein ordered updated imaging, including a scan of the abdomen and pelvis.
The results were startling: Anne’s right lung had collapsed, and there were signs of diaphragm involvement. She was immediately sent to the hospital for a chest tube—and later connected with Dr. Christos Stavropoulos, a thoracic surgeon and Director of Thoracic Oncology at Englewood Health.
For the first time, Anne’s chest symptoms were not only taken seriously—they were recognized as part of her endometriosis.
ESSE Care Insight: In reproductive-aged women, especially those with known endometriosis, symptoms like shortness of breath, chest pain, or shoulder pain that worsen around menstruation should be evaluated for thoracic endometriosis. A normal chest X-ray does not rule it out. Diagnosis often requires specialized imaging or thoracoscopic surgery.
What Surgery Revealed
In April 2024, Anne underwent collaborative surgery with Dr. Goldstein and Dr. Stavropoulos. The findings confirmed what no scan could:
- Endometriosis implants on the diaphragm
- Endo tissue on the pleura (lining around the lungs)
- Inflammation and fenestrations (holes) in the diaphragm
- Herniation of the liver into the chest cavity
The extent of disease explained both her respiratory distress and the failure of her earlier surgeries. Without this operation, Anne likely would’ve experienced repeated lung collapses and worsening organ complications.
A second surgery later that year ensured that all thoracic and pelvic disease had been addressed.
What Healing Feels Like When You’re Finally Believed
Since surgery, Anne has continued to improve with ongoing physical therapy, lung monitoring via spirometry, and fertility-focused follow-up.
For the first time in years, she feels supported, stable, and hopeful about her next steps.
“I finally have a team that listens to me, and to each other. I feel seen. I feel safe.”
Her care plan is centered on both recovery and fertility preservation, with close coordination between her OB/GYN, thoracic surgeon, and reproductive specialist.
ESSE Care Insight: Thoracic endometriosis is strongly associated with advanced-stage pelvic endo. Most patients also have diaphragmatic disease—even if it’s not visible on imaging. A multidisciplinary surgical approach offers the best outcomes for fertility, quality of life, and disease recurrence.
What Anne Wants You to Know
If you’ve been told your symptoms are in your head, Anne wants you to remember this:
- You are the expert on your body. If something feels off, keep pushing.
- Breathing should not be painful or difficult. Neither should periods.
- You deserve doctors who talk to each other—and listen to you.
- Surgery isn’t the end. It can be the beginning of real healing.
Why Her Story Matters
Anne’s story is a powerful reminder that endometriosis can hide in places few expect, including the lungs, diaphragm, liver, and chest wall. But with the right team, even the most complicated cases can be addressed safely and compassionately.
At ESSE Care, we believe that every patient deserves full-body care—not just symptom management. If you see yourself in Anne’s story, know this: You’re not overreacting. You’re not alone. And your symptoms deserve answers.
Reach out to our team today for a case review. Let’s help you breathe easier. For good.
