Raising Awareness This March: Understanding Endometriosis
March marks Endometriosis Awareness Month, a global effort to shine a spotlight on a chronic condition that affects millions of women and individuals with a uterus. Endometriosis occurs when tissue similar to the uterine lining—called the endometrium—grows outside the uterus, leading to intense pain, fertility challenges, and a host of other symptoms. Despite impacting an estimated 11% of women in the U.S. between ages 15 and 44, and 1 in 10 women in the UK, it remains poorly understood and often undetected for years. This blog post explores what endometriosis is, its effects on daily life, the hurdles to diagnosis, and how we can all play a part in supporting those affected.
Why Awareness Matters
Endometriosis isn’t just a women’s issue—it’s a public health challenge. With no prevention and no cure, the focus must be on recognition and support. Employers can help by becoming “Endometriosis Friendly,” offering flexible policies for those affected, while individuals can push for better research and care. As Mary Lou Ballweg, founder of the Endometriosis Association, says, early diagnosis gives women the power to advocate for their health. By breaking the silence, we can reduce the years of suffering and build a future where endometriosis is met with compassion and action.
What Is Endometriosis?
Endometriosis is a hormonal and immune system disorder where endometrial-like tissue appears in places it shouldn’t, such as the ovaries, Fallopian tubes, or even beyond the pelvic region. Unlike the uterine lining that sheds during menstruation, this misplaced tissue has no exit route, causing inflammation, pain, and complications like cysts and scar tissue. First identified microscopically by Karl von Rokitansky in 1860, endometriosis affects approximately 176 million people worldwide. While not life-threatening, its impact on physical, mental, and social well-being can be profound—a key reason why awareness is so vital.
Symptoms and Their Impact
The hallmark of endometriosis is pain, often far more severe than typical menstrual discomfort. Here’s how it commonly shows up:
- Chronic Pelvic Pain: Persistent discomfort that disrupts everyday activities.
- Heavy or Irregular Bleeding: Excessive menstrual flow or spotting between periods.
- Painful Periods: Cramps that intensify over time, sometimes debilitating.
- Discomfort During Sex: Pain that can strain relationships and intimacy.
- Infertility: A challenge for many, as tissue growth can affect reproductive organs.
- Pain with Bowel Movements or Urination: Especially during menstruation, adding to the distress.
These symptoms don’t just hurt physically—they take an emotional toll, too. Many women describe feeling isolated, anxious, or depressed as the condition interferes with work, school, or family life. For some, the growths form adhesions that bind organs together, requiring surgical intervention. Personal accounts reveal the depth of this struggle: women speak of sudden, sharp pain that halts their ability to move, exhaustion that feels unrelenting, and a sense that their lives are no longer their own.
The Diagnosis Dilemma
Getting diagnosed with endometriosis is often a long and frustrating journey. Studies show an average delay of seven to ten years, a gap worsened since the pandemic according to Endometriosis UK’s 2024 report. Why does it take so long? Several factors contribute:
- Systemic Inequities: Black and Hispanic individuals are diagnosed at lower rates than White individuals, reflecting disparities in healthcare access and attention.
- Normalization of Pain: Severe menstrual pain is often dismissed as “normal,” delaying medical investigation.
- Complex Diagnosis: While pelvic exams, ultrasounds, or MRIs can hint at endometriosis, only laparoscopic surgery—a procedure requiring anesthesia—confirms it definitively.
This delay means years of untreated suffering for many. Mothers share heartbreaking stories of watching teenage daughters endure crippling pain, missing school, and losing their childhood to a condition doctors initially overlook. Early diagnosis is critical to slow the disease’s progression, yet too often, patients feel unheard or brushed off by healthcare providers.
Treatment Options and Management
There’s no cure for endometriosis, but treatments can ease symptoms and improve quality of life. Options include:
- Surgery: Laparoscopic procedures remove abnormal tissue, though recurrence is possible without addressing underlying factors.
- Pain Relief: Anti-inflammatory drugs, diet and pelvic floor PT target discomfort.
- Hormone Therapy: Birth control pills, GnRH antagonists (like elagolix/Orlissa, introduced in 2018), or other hormonal treatments suppress menstruation to reduce symptoms.
Even with these, relief isn’t guaranteed—some women report pain persisting after hysterectomies or multiple surgeries. The Endometriosis Association emphasizes that surgery alone doesn’t solve the root hormonal and immune imbalances. Lifestyle changes, such as eating organic to avoid dioxins (toxins linked to endometriosis), can also help. Early intervention is key, as the World Health Organization notes it can halt worsening damage.
Voices of Experience
The human side of endometriosis is raw and real. Women describe pain so intense they’ve contemplated drastic measures, or rupturing ovarian cysts that feel like internal assaults. Others express frustration with dismissive doctors who suggest tea or baths for what turns out to be severe disease. Parents feel helpless as their daughters—some as young as 8—battle symptoms without answers. Yet amidst the struggle, there’s resilience: families credit organizations like the Endometriosis Association for empowering them with knowledge, and some celebrate “miracle” children born despite infertility odds. These stories underscore why awareness matters—it’s a lifeline to understanding and hope.
How You Can Support Endometriosis Awareness Month
Started by the Endometriosis Association in 1993 as a week-long observance, Endometriosis Awareness Month has grown into a worldwide call to action. Here’s how you can join in:
- Lend Your Support: Volunteer with or donate to groups like the Endometriosis Association, which offers free resources like yellow ribbons and multilingual brochures (contact them at 800-992-3636 or Endo@EndometriosisAssn.org).
- Get Involved: Attend community events or virtual webinars—check EndometriosisAssn.org or Endometriosis-UK.org for listings.
- Speak Out: Share facts or personal stories using #EndometriosisAwarenessMonth to spark conversations.
- Learn and Teach: Educate yourself about symptoms and urge others to question persistent pain—it’s not “just part of being a woman.”
Wearing a yellow ribbon, the symbol of endometriosis awareness since 1980, is a small but visible way to show solidarity.
