Endometriosis is a chronic and often debilitating condition that can cause severe physical pain, emotional strain, and significant disruption to daily life. Women with endometriosis may experience intense menstrual cramps, persistent pelvic pain, fatigue, and other symptoms that interfere with work, relationships, and overall well-being.
Despite its impact, endometriosis is notoriously difficult to diagnose. Symptoms are often dismissed as typical menstrual discomfort or attributed to other conditions. A definitive diagnosis often requires specialized procedures, such as laparoscopic surgery. As a result, many patients spend years searching for answers while symptoms worsen, compounding both the physical and emotional toll.
Recognizing when pain is not normal
Dr. Emily Sendukas, a clinical assistant professor in the Department of Obstetrics and Gynecology at The University of Texas Medical Branch (UTMB), said endometriosis can affect patients from adolescence through menopause.
“Women are often told this is ‘just’ pelvic pain, but if she is experiencing pain so severe that she can’t get out of bed or it affects her ability to work or function day to day, that is not normal menstrual pain,” Sendukas said. “It’s time to see a doctor.”
Many patients normalize or downplay their symptoms, sometimes living with chronic pain for decades before seeking care.
“This pain does not have to be a way of life,” she said. “Pain is invisible, and I respect women who come to me and talk about it. Everyone’s pain threshold is different, but if it concerns the patient, I believe her, and there are treatment options.”
What causes endometriosis?
The exact cause of endometriosis remains unknown, but Sendukas said one leading theory involves retrograde menstruation. In this process, some of the tissue shed during a menstrual period flows backward through the fallopian tubes and implants elsewhere in the abdomen.
“The tissue sticks and acts essentially like glue,” she said. “It forms implants on organs and the pelvic side walls.”
The tissue can attach to structures such as the bladder, rectum, and other pelvic organs, forming nodules and scar tissue.
Symptoms often extend beyond pelvic pain. Patients may experience nausea, painful bowel movements or urination, painful intercourse, or uncomfortable bloating. In some cases, symptoms vary widely or may be absent altogether, making the condition even harder to identify.
Why diagnosis can take years
Diagnosing endometriosis often involves ruling out other conditions with overlapping symptoms.
“A patient may undergo extensive evaluations for hip or back pain, or even a gastrointestinal workup, before endometriosis is considered or confirmed,” Sendukas said. “Bladder symptoms are also common, and endometriosis is frequently mistaken for recurrent urinary tract infections.”
Research has shown that endometriosis can appear outside the pelvis, including in the diaphragm, lungs, and thoracic cavity. In these cases, symptoms may include chest pain or shortness of breath.
The complexity of symptoms and the overlap with other conditions can delay diagnosis and prolong suffering.
Treatment options and what to expect
Sendukas said that treatment for endometriosis depends on a patient’s symptoms, disease severity, and personal goals.
“You know your pain level,” she said. “Do not let anyone tell you your pain isn’t as bad as you think it is.”
Evaluation often begins with a pelvic exam and imaging, such as MRI, which can help identify larger lesions or ovarian cysts. Because imaging cannot always fully capture the extent of disease, endometriosis is ultimately staged during surgery, from Stage 1 to Stage 4, with Stage 4 being the most severe. Pain levels, however, do not always correlate with disease stage.
“It’s possible to have severe pain with Stage 1 disease or minimal to no pain with Stage 4,” Sendukas said.
Medication
Hormonal therapies, including birth control pills, injections, and intrauterine devices, are commonly used to manage symptoms.
“If we can control or suppress the menstrual cycle, it can significantly reduce pain,” Sendukas said.
She added that some medications temporarily induce a reversible menopausal state and are typically used short term or as a bridge to surgery. Other medications may be prescribed after surgery to help reduce recurrence.
Surgery
Minimally invasive procedures, such as laparoscopic or robotic surgery, can remove endometriosis implants. Sendukas said surgery often leads to better outcomes.
In many cases, reproductive organs can be preserved, allowing patients to maintain fertility.
“It’s still possible to become pregnant with endometriosis,” she said. “We work closely with fertility specialists to help patients reach their goals.”
Even after surgery, endometriosis can recur, though removing the uterus may reduce that risk.
Physical therapy
Pelvic floor physical therapy is also an important part of treatment and recovery.
“The body becomes accustomed to anticipating pain,” Sendukas said. “Physical therapy helps the pelvic floor relearn how to function without it.”
A path forward
While endometriosis remains challenging to diagnose and treat, progress is being made in awareness and care.
“We’ve come a long way in listening to patients and helping them access care, but there’s still room to improve,” Sendukas said.
She encourages patients to speak up when symptoms feel out of proportion to typical menstrual pain.
“There’s reason to feel optimistic,” she said. “I treat patients with this every day. It’s challenging, and we may need to try different approaches, but care is individualized.”
Endometriosis can be a long and difficult journey from diagnosis to treatment. But patients are not without options or support.
“Never give up hope,” Sendukas said. “You’re not alone. If one method doesn’t work, we’ll keep trying until we find the right one.”
With increased awareness, earlier recognition, and a personalized approach to care, patients with endometriosis can find relief and reclaim their quality of life.