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What is Endometriosis?
When I was 16 I realized I couldn’t go to school on my period. I learned to save all my sick days for the first few days of my period. The chronic fatigue took over most of the month and then each month was hit with a debilitating, couch needing period. It took 16 years before I was diagnosed. I like many women faced gender bias in doctors office, not being heard and was left with out care and a lot of shame around my inability to function during my period and my inability to “fix” the problem.
Once I realized that my condition my have a name I dived deep into research to find is was a very shallow dive. Research was so limited but I found that I was not alone. "endo-" (inside), "metrium" (uterus), and "-osis" (a diseased condition). The name might sound clinical, but for millions of women+ worldwide, its more than a word its a way of life. There is a growing number of Endometriosis cases in the world, what was 1 out of 10 is now 1 out of 7. If your periods seem far more debilitating than others or you struggle with chronic pain, endometriosis could be the diagnosis you are looking for.
What Happens in the Body
Endometriosis occurs when tissue similar to the lining of the uterus (endometrium) grows outside the uterus. Imagine these cells setting up camp in places they don’t belong—like your ovaries, fallopian tubes, or even your intestines and lungs. As your hormone levels fluctuate during your cycle, these cells behave like they’re still inside the uterus. They thicken, break down, and bleed, just as your endometrial lining does during menstruation.
But here’s the problem: unlike regular menstruation, this tissue has nowhere to go. It’s trapped. This leads to inflammation, scar tissue (adhesions), and intense pain. Over time, these adhesions can cause organs to stick together or even shift out of place, making the pain worse.
Latest Research: Where Does Endometriosis Come From?
The exact cause of endometriosis is still unclear, but recent research points to genetics as a key factor. The condition tends to run in families, and specific genetic mutations have been linked to its development. Additionally, some theories suggest endometrial-like cells could form outside the uterus during fetal development and later activate during puberty. Immune system dysfunction may also play a role, as the body might fail to clear away these misplaced cells, allowing the condition to progress.
Progression
If left untreated, endometriosis can get worse over time. The lesions can spread and cause damage to nearby organs, leading to bigger issues like cysts on the ovaries (endometriomas), scarring, and adhesions that make organs stick together or move out of place.
As it progresses, endo can affect more than just your reproductive organs—it can also impact your bladder, bowels, and in rare cases, even your lungs, causing chronic pain and other complications.
There's also a possible link between untreated endo and a higher risk of autoimmune diseases, certain cancers, and heart problems, though that’s still being studied.
Catching and managing endo early is key to preventing further damage and keeping your health on track.
The Symptoms
What’s tricky about endometriosis is how varied the symptoms can be. The hallmark sign is pelvic pain—especially severe cramps during menstruation that don't respond to over-the-counter pain relievers. But the pain isn’t limited to periods. Many with endometriosis experience pain during intercourse, urination, or bowel movements. Some endure chronic pain throughout the month or during ovulation. Digestive issues, back pain, joint pain, unexplained infertility, chronic fatigue, and infertility can also be signs .
What’s consistent though amongst all endo patients, is the frustration and isolation many feel when these symptoms are dismissed or misunderstood. Endometriosis isn’t “just a bad period,” but for too long, that’s how it’s been perceived.
Why Is It So Hard to Diagnose?
I went to over 20 doctors before getting a probable diagnosis from an Nutritional Therapist. I was dismissed by most, or when I went there for solutions I only found that I knew more they did and was left with more questions, why do doctors not know more? One of the biggest challenges with endometriosis is its invisibility. Most of the time it doesn’t show up on routine scans, and symptoms overlap with other conditions like irritable bowel syndrome (IBS) or pelvic inflammatory disease (PID). Because of this, many doctors are slow to suspect endometriosis, contributing to the delay in diagnosis. The only definitive way to diagnose endo is through a laparoscopy, a somewhat invasive surgery that allows doctors to visually confirm the presence of endometrial-like tissue outside the uterus and they say if you are in there to check, you might as well be prepared to remove the lesions (but more on that in another blog.)
The Impact on Endometriosis can significantly impact daily life. The pain alone can be debilitating, but it’s not just the physical symptoms. Many people with endo also grapple with emotional and mental health challenges, from dealing with chronic pain to managing the uncertainty of their condition. Relationships, careers, and quality of life often take a hit.
Hope for the Future
While there’s currently no cure for endometriosis, there are treatments available that can help manage the symptoms. Nutritional options, hormonal therapies, pain management, and surgical options are part of the toolkit.
Endometriosis is not something to be endured in silence. The more we understand about the condition, the closer we get to reducing the average diagnosis time and improving the quality of care.
References:
Endometriosis in Australia is now estimated to be 1 in 7 females and those assigned female at birth (2023).
No specific participant count. Study includes a review of endometriosis prevalence rates in Australia, affecting 1 in 7 individuals assigned female at birth.
Consensus on current management of endometriosis (2013).No specific participant count. This review consolidates global consensus on the management of endometriosis, based on data from over 1,000 women across 42 studies.
Endometriosis and pelvic pain: Epidemiological evidence of the relationship and implications (2005).
1,026 women. Study examines the correlation between endometriosis and pelvic pain, emphasizing diagnostic challenges.
Clinical practice: Endometriosis (2010).
,500 women. This study offers an overview of the clinical management and treatment options for endometriosis.
Endometriosis: Epidemiology, Diagnosis and Clinical Management (2017).
No specific participant count. This review discusses the prevalence, diagnostic methods, and clinical management of endometriosis.
Endometriosis (2020).
No specific participant count. This comprehensive review covers the latest research on endometriosis, its impact, and treatment approaches.
Genetics of endometriosis: Current status and future directions (2021).
No specific participant count. This study investigates the genetic factors linked to endometriosis and explores emerging research in this field.
Endometriosis: Diagnosis and management (2010)
No specific participant count. This review outlines diagnostic criteria and management strategies for endometriosis, based on multiple clinical guidelines.
Endometriosis: Pathogenesis and treatment (2014).
800 women. This study delves into the causes and treatment strategies for endometriosis, highlighting new findings in pathogenesis.
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