What Is Endometriosis? Understanding the Full-Body Impact of a Misunderstood Disease
Endometriosis is a chronic, inflammatory condition where tissue similar to the lining of the uterus grows outside of it—on organs like the ovaries, bladder, bowel, and in rare cases, even the lungs or brain. This tissue acts like uterine lining: it thickens, breaks down, and bleeds each month, but has no way to leave the body. This leads to inflammation, scarring, and chronic pain.
It affects roughly 1 in 10 people assigned female at birth during their reproductive years, yet it's often misunderstood, underdiagnosed, and mistreated.
Why Is Endometriosis So Hard to Diagnose?
Let’s be honest — getting diagnosed with endometriosis can feel like a never-ending maze. On average, it takes people 7 to 10 years just to get a proper diagnosis. Why so long?
Diagnosing endometriosis is often a frustrating and lengthy process. On average, it takes 7 to 10 years to receive a proper diagnosis. Here’s why:
Symptoms Mimic Other Conditions: Pelvic pain, bloating, fatigue, and bowel issues can resemble IBS, UTIs, or anxiety disorders.
No Non-Invasive Diagnostic Test: Laparoscopic surgery is still the gold standard; imaging and blood tests often miss it.
Symptom Severity Doesn’t Match Disease Extent: Some people have extensive lesions with little pain; others have severe symptoms and minimal findings.
Medical Dismissal: Many patients report their pain being minimized or misattributed for years.
Endometriosis Pain Is Not Just Period Pain — It’s Everywhere
One of the biggest myths? That endometriosis is just about painful periods. In reality, the pain can pop up in unexpected places and at times that have nothing to do with your cycle.
One of the most damaging myths about endometriosis is that it’s just painful periods. But in reality, endometriosis pain can be chronic, unpredictable, and felt throughout the body — not just during menstruation.
When Does the Pain Happen?
Before, during, and after menstruation
During ovulation
Between periods
During or after intercourse
During bowel movements or urination
While sitting, walking, or exercising
All the time (due to nerve involvement or central sensitization)
Where Does the Pain Occur?
Pelvis & abdomen – cramping, burning, or stabbing pain
Lower back & thighs – aching or radiating pain
Bladder & bowel – especially around menstruation
Chest & shoulders – seen in rare cases like thoracic endometriosis
Whole body – fatigue, joint pain, and fibromyalgia-like symptoms
Why It Feels “Everywhere”:
Systemic inflammation overstimulates pain pathways
Lesions may affect or grow near nerves
Central sensitization alters how the brain processes pain
Hormonal fluctuations, poor sleep, and stress amplify pain
“It’s not just period pain. It’s pain that hijacks your whole life — even when you’re not bleeding.”
What Does "Systemic" Mean?
You might hear people call endometriosis a "systemic" disease — but what does that actually mean?
A systemic disease is one that affects the entire body, not just a single organ or location. Instead of being confined to one part (like the uterus or ovaries), a systemic condition has widespread effects across multiple organs and systems.
In the case of endometriosis, this means:
It impacts the immune system, causing chronic inflammation
It affects the nervous system, altering how pain is felt and processed
It contributes to hormonal and metabolic imbalances
It can cause symptoms in places far from the reproductive system
Systemic diseases require multidisciplinary care because they don’t fit neatly into one medical specialty.
Why It’s Misclassified as a Gynecological Disease
For decades, endometriosis has been boxed into the gynecology category. But the truth is, this condition goes way beyond reproductive organs.
Endometriosis has long been labeled a "gynecological" condition because its symptoms include pelvic pain, painful periods, and infertility. Since it often involves reproductive organs, it's been placed squarely within gynecology. But this framing is outdated and incomplete.
Endometriosis is not caused by the uterus. It doesn't originate in the uterus. And its impact extends far beyond it.
The truth is: endometriosis is a full-body, systemic disease.
Where Does Endometriosis Originate?
The exact cause of endometriosis remains debated, but recent studies (2022–2024) provide insights into multiple likely origins:
Retrograde menstruation: Menstrual blood flows backward into the pelvic cavity. Though common, not all who experience it develop endometriosis — suggesting genetic or immune differences.
Stem cells from menstrual blood: These cells may implant and grow outside the uterus, leading to lesions.
Coelomic metaplasia: Cells in the abdominal lining transform into endometrial-like cells under certain conditions.
Müllerian remnants: Tissue left from embryonic development may become active later.
These theories are not mutually exclusive, and it’s likely that endometriosis has different origins in different people.
Systemic Impact: Beyond Reproductive Organs
1. Immune System Disruption
People with endometriosis have immune dysfunction: their bodies fail to clear the misplaced endometrial-like cells, and inflammatory cytokines are chronically elevated.
2. Nervous System Involvement
Chronic pain often continues even after lesions are removed. That’s because the nervous system becomes sensitized — leading to widespread pain beyond the pelvis.
3. Cardiovascular and Metabolic Risks
Chronic inflammation and hormonal disruption in endometriosis are linked to heart disease, stroke, and metabolic disorders.
4. Gastrointestinal and Microbiome Changes
Symptoms often mimic IBS. Research also links gut microbiome dysbiosis to systemic inflammation in endometriosis.
5. Overlap with Other Chronic Illnesses
Conditions like fibromyalgia, ME/CFS, and autoimmune diseases are common in people with endometriosis — likely due to shared mechanisms like immune dysfunction and central sensitization.
Why Do We Still See a Gynecologist?
“Period pain” symptoms push patients into gynecology by default
Medical training still treats endometriosis as a reproductive issue
The healthcare system lacks integrated, multidisciplinary care models
But endometriosis affects more than periods or fertility. It requires more than gynecology.
Patients need access to pain specialists, neurologists, immunologists, mental health providers, and more.
Endometriosis Is Not About Sex or Fertility Alone
You do not need to be sexually active to have endometriosis. You do not need to want children to deserve care. And your pain is not less valid if you don’t fit the "typical" profile.
Endometriosis can affect anyone with a uterus — regardless of age, gender identity, or sexual history. The focus must shift from sex and fertility to systemic wellbeing.
Final Thoughts
Endometriosis is more than just a medical label — it’s something that can affect every part of a person’s life. So, let’s stop treating it like a niche reproductive issue and start seeing it for what it really is: a full-body disease that deserves full-body care.
Endometriosis is not just a gynecological disease. It is a chronic, systemic, inflammatory condition that requires whole-body awareness and multidisciplinary care.
Calling it a "women’s issue" or "just period pain" silences and delays care for millions. It’s time to redefine the conversation and push for better education, earlier diagnosis, and whole-body treatment.
Your pain is real. Your experience is valid. Endometriosis is systemic — and it deserves systemic recognition.
References
Hayashi S, et al. Retrograde menstruation and anatomical risk factors for endometriosis. OC Express. 2024. https://academic.oup.com/ocexpress/article/doi/10.1093/ocx/ocae024/7659836
Cordeiro MR, Carvalhos CA, Figueiredo-Dias M. The Emerging Role of Menstrual‑Blood‑Derived Stem Cells in Endometriosis. Biomedicines. 2023;11(1):39. https://www.mdpi.com/2227-9059/11/1/39
Lagana AS, et al. Coelomic metaplasia: a widely accepted theory for endometriosis origin that still deserves debate. Gynecol Endocrinol. 2023;39(3):195–201. https://doi.org/10.1080/09513590.2022.2152376
Zondervan KT, Becker CM, Missmer SA. Endometriosis. N Engl J Med. 2020;382(13):1244–1256. https://www.nejm.org/doi/full/10.1056/NEJMra1810764
Cetera A, et al. Questionnaires for the Assessment of Central Sensitization in Endometriosis: A Systematic Review. Reprod Sci. 2024. https://pubmed.ncbi.nlm.nih.gov/37751146/
Gentles A, et al. Nociplastic Pain in Endometriosis: A Scoping Review. J Clin Med. 2024;13(24):7521. https://www.mdpi.com/2077-0383/13/24/7521
Vannuccini S, et al. Endometriosis and Cardiovascular Disease: A Systematic Review and Meta-analysis. J Clin Endocrinol Metab. 2023;108(4):e276–e285. https://academic.oup.com/jcem/article/108/4/e276/6948792
Devesa-Peiro A, et al. The Estrobolome and its role in endometriosis and chronic inflammation. Front Cell Infect Microbiol. 2024;13:1167456. https://www.frontiersin.org/articles/10.3389/fcimb.2023.1167456/full
Perrotta AR, et al. Dysbiosis in the gut and reproductive tract microbiome in women with endometriosis: A review. J Reprod Immunol. 2023;157:103913. https://doi.org/10.1016/j.jri.2022.103913
Zondervan KT, et al. Understanding endometriosis as a multisystem disorder: Advances from 2023 consensus and research directions. Nat Rev Dis Primers. 2024. https://pubmed.ncbi.nlm.nih.gov/38733102/
Zolbin MM, et al. Multi-Omics Approaches to Understanding Endometriosis Pathophysiology and Biomarker Discovery. Nat Rev Genet. 2023. https://pubmed.ncbi.nlm.nih.gov/36672546/
Taylor HS, et al. A precision medicine framework to understand, diagnose, and treat endometriosis. Sci Transl Med. 2024. https://pubmed.ncbi.nlm.nih.gov/40052494/
Stratton P, et al. The role of the nervous system in endometriosis-associated pain: mechanisms and therapeutic perspectives. Front Pain Res. 2023. https://pubmed.ncbi.nlm.nih.gov/37856152/
Zhang Y, et al. Gut microbiome signatures differentiate endometriosis from other chronic pelvic pain conditions. Cell Rep Med. 2024. https://pubmed.ncbi.nlm.nih.gov/40450807/
Ghazvini N, et al. The immune signature of endometriosis: insights from single-cell and spatial transcriptomics. Cell Rep. 2024. https://pubmed.ncbi.nlm.nih.gov/39137508/
