Endometriosis nearly took my life

When she finally received a diagnosis, the endometriosis had already reached stage 4. Years of dismissed symptoms—debilitating pain, projectile vomiting, heavy menstrual bleeding—had been brushed off as “normal.” By then, the disease had spread beyond her reproductive system, attaching to her bowels, uterus, and even her kidneys, constricting her ureter so severely that surgeons struggled to remove it.

The specialist who operated on her called it the most severe case he’d ever seen. The surgery, expected to last five hours, stretched to twelve. She woke up in the ICU, surrounded by medical equipment. The nurse let her know that because of the surgery’s length, they needed to keep her in ICU to monitor her condition.

Dismissed for years

Her experience reflects a broader problem. Women, particularly Black women, often report being ignored or minimized when describing symptoms tied to menstrual health. She recalled being labeled “dramatic” or “weak” whenever she expressed distress, even as a teenager. Doctors repeatedly told her there was no cure, but that it wasn’t cancer—implying she should be grateful and stop complaining.

“As if that was the balm for whatever ailed me,” she wrote. The message was clear: her pain wasn’t serious enough to warrant real intervention. Meanwhile, her condition worsened. Back pain, headaches, and difficulty walking were dismissed as unrelated. By 2021, she couldn’t wear pants with a waistband, her abdomen too sensitive to touch.

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The specialist she eventually saw delivered grim news. The disease had created a “frozen pelvis,” fusing her bowels to her uterus and damaging nerves that made walking excruciating. Masses had spread to her kidneys, causing complications. The surgeon’s honesty was a shock—no one had ever taken her symptoms seriously before.

A near-fatal complication

After the initial surgery, her recovery seemed on track—until it wasn’t. Discharged from the hospital, she soon deteriorated. She had had surgeries for endometriosis before and knew something was wrong. Her condition had started to take hold of her in 2021, leaving her in constant severe pain, battling fatigue, and struggling to walk without pain. The specialist confirmed her condition was advanced and severe, warning that the surgery might not be entirely life-changing due to the stage of the endometriosis.

She was exceptionally unwell and in ICU. The specialist explained that endometriosis was absolutely everywhere: it had attached to her uterosacral ligaments, affected the nerves causing pain when walking, and constricted her ureter so severely that surgeons attempted to remove it.

The pattern is well-documented. Research shows women, especially women of color, wait longer for diagnoses and are more likely to have their pain dismissed as exaggerated or psychological. Endometriosis affects an estimated 1 in 10 women globally but is often treated as a minor inconvenience rather than a chronic, progressive disease. Delays in care can lead to irreversible damage.

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Pushing for accountability

Her case is extreme but not isolated. Severe endometriosis can cause organ failure, infertility, and complications like kidney damage. Yet many doctors still downplay its risks, offering painkillers and birth control without addressing the underlying disease.

She argues that medical professionals must acknowledge what they don’t know. If a doctor isn’t equipped to treat the condition, they should refer patients to specialists—not dismiss symptoms as “normal.” The stigma around women’s health, particularly menstrual issues, contributes to unnecessary suffering and preventable harm.

“No one deserves to be disregarded when seeking medical help,” she said. Her goal is to encourage earlier intervention, more research funding, and a change in how the disease is viewed—not as a minor issue, but as one that can destroy lives if left untreated.

For her, the struggle continues. The damage from years of delayed care is permanent. But she remains determined to ensure others don’t face the same battle—alone or unheard.