The World Health Organization estimates that endometriosis affects one in every ten women globally—at least 400 million people—but the average patient waits seven to ten years for a diagnosis, according to 2024 Russian clinical guidelines cited by Lenta News.
The diagnostic delay stems partly from the technical difficulty of detecting the disease through standard imaging. Ultrasound detection of endometriosis is operator-dependent and requires roughly 40 minutes to an hour of expert scanning time that general medical networks rarely have, gynecologist Alexander Kabeshov told Lenta News. British research shows the wait has grown longer, increasing from eight years in 2020 to nine years and four months in 2026.
For some patients, the consequences of missed diagnosis are life-threatening. Julia, a 39-year-old mother of two from Novotroitsk in Russia’s Orenburg region, experienced three spontaneous pneumothorax episodes—collapsed lungs caused by air leaking into the chest cavity—each coinciding with her menstrual period, Lenta News reported. Local doctors initially dismissed her self-researched suspicion of diaphragmatic endometriosis, telling her that such cases “don’t happen” in her city.
Thoracic Endometriosis Collapsed Julia’s Lung Three Times
In August 2024, Julia felt pain under her right shoulder blade and heard crackling sounds when she breathed. A CT scan at a hospital in Novotroitsk revealed a complete collapse of her right lung. Doctors performed emergency drainage of the pleural cavity the same day her menstruation began. Two months later, the pneumothorax recurred during her next period, requiring another drainage procedure.
After searching online for causes of spontaneous pneumothorax, Julia identified thoracic endometriosis, a rare form where endometrial-like tissue grows on the diaphragm and lungs. When she suggested this diagnosis to doctors, they rejected it. She was transported by ambulance six hours to Orenburg, where thoracic surgeons initially laughed at the suggestion, saying diaphragmatic endometriosis was rare but possible.
Julia underwent two more surgeries. The first removed her pleura—the protective membrane around the lung—and tissue analysis confirmed endometriosis. A year later, a third pneumothorax forced open-chest surgery to remove endometrial tissue, resect part of her lung, and place metal clips on her diaphragm to prevent it from bulging into the chest cavity. After the first operation, her liver had herniated through the diaphragm and compressed her chest organs.
Expert Ultrasound Scans Required for Accurate Diagnosis
Current diagnosis relies on ultrasound or MRI, but not every technician can identify the disease.
Before surgery, patients must be “mapped” to identify all affected areas, since endometriosis can spread beyond reproductive organs to the bowel, bladder, and ureters.
Severe forms can obstruct the ureter, causing what doctors call “silent kidney loss,” where the kidney slowly loses function as the disease compresses the tube, Kabeshov explained.
Elena Waited 25 Years for Her Diagnosis
Elena, now 40, experienced painful periods since adolescence but was told by her physician parents that “everyone hurts, here’s a pill.” She lived on painkillers for roughly 25 years before receiving an endometriosis diagnosis in early 2026. Her pain, rated six to eight out of ten, subsided during her two pregnancies but returned in 2022 after she finished breastfeeding her second daughter.
After moving from a small Arctic town to Yekaterinburg, Elena sought care in 2026 when stress triggered severe abdominal pain, nausea, and near-fainting. A gynecologist immediately suspected endometriosis and ordered an ultrasound. She now faces surgery to remove ovarian cysts and lesions from her bowel and bladder. Doctors warned that a nodule on her intestine may require bowel resection, which would mean living with a stoma for several months.
Half of Patients Report Depression Symptoms
Endometriosis significantly reduces quality of life, Erofeeva said. Patients miss work and school, withdraw socially, and experience reduced libido alongside constant stress. Pain often persists throughout the entire menstrual cycle, not just during menstruation.
Research from Women’s Mental Health Australia published in 2026 found that one in two women with endometriosis reported signs of depression—double the rate among women without the condition.
Hormone Therapy Causes Weight Gain and Psychiatric Side Effects
Treatment often creates problems comparable to the disease itself. Hormonal medications can cause weight changes, dry mucous membranes, itching, hair loss, migraines, and psychiatric disorders, Lenta News reported. Despite affecting 400 million women, no curative treatment exists, according to the WHO.
Questions Patients Ask About Endometriosis
Is endometriosis curable?
The disease remains chronic and benign but can cause severe organ damage.
What increases a woman’s risk of developing endometriosis?
Family history plays a role in more than 90 percent of cases, Erofeeva said. Other risk factors include early first menstruation, short menstrual cycles, heavy and prolonged periods with brown spotting, migraines, and allergic rhinitis.
Can endometriosis spread beyond the reproductive organs?
Yes. The disease can grow on the diaphragm, lungs, bowel, bladder, and ureters. Thoracic endometriosis can cause collapsed lungs during menstruation, while ureter involvement can silently destroy kidney function.
The condition remains without a cure despite affecting hundreds of millions, and diagnostic delays of seven to ten years continue to leave patients in pain while the disease progresses.
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