Endometriosis 101: A Comprehensive Guide
Grandpa: "I don't understand this endometriosis thing. Is it like a uterus malfunction or something?"
You: Sighing, frustrated but determined to educate. "It's not a uterus malfunction, Grandpa. Endometriosis is a whole-body inflammatory, debilitating condition that's hijacking my life and literally billions of others around us."
Breaking the Silence on Endometriosis
Despite affecting billions on a global scale, endometriosis remains shrouded in silence. This lack of discussion isn't due to a lack of effort but rather persistent stigma, misconceptions, and outdated education methods. It's time to break the silence and shed light on this chronic condition that affects so many.
What Is Endometriosis?
Endometriosis is increasingly being recognized as a systemic inflammatory disease with characteristics overlapping autoimmune conditions. Many individuals with endometriosis are also diagnosed with autoimmune disorders such as lupus, rheumatoid arthritis, Hashimoto’s thyroiditis, or multiple sclerosis. This overlap has prompted researchers to investigate immune dysregulation as a potential core mechanism in endometriosis development and persistence. These abnormal systemic cells develop into lesions or unidentifiable tissues, leading to pain, organ dysfunction, and other complications. This condition may manifest genitally or extra-genitally, affecting various parts of the body.
In addition to its autoimmune-like behavior, research has identified shared biomarkers between endometriosis and various cancers, particularly ovarian cancer. Studies have noted that CA-125, a tumor marker often used in ovarian cancer detection, is also elevated in some individuals with endometriosis — though not exclusively. Other emerging markers such as IL-6, VEGF, and BCL-6 have been studied for their roles in cell proliferation, inflammation, and immune evasion in both endometriosis and cancer biology.
While endometriosis itself is not a cancer, the biological parallels — including angiogenesis (the growth of new blood vessels), unregulated cell growth, and resistance to apoptosis (programmed cell death) — underscore the urgent need for better diagnostics and monitoring tools, especially in patients at risk for malignant transformation or with overlapping immune-related conditions.
Key Characteristics:
Systemic Impact: Beyond reproductive organs, endometriosis can affect all 11 major body systems including the lungs and diaphragm, muscles, urinary and digestive systems and even the nervous system and on into the brain.
Inflammatory Nature: It shares similarities with autoimmune conditions, leading many researchers to classify it as an inflammatory, autoimmune disruption.
High Prevalence: Up to over a billion individuals globally may be affected.
Serious Health Risks: Increased likelihood of ischemic heart disease (40%), cerebrovascular disease (19%), and a 31% higher risk of early death.
The Daily Toll of Endometriosis: A Whole-Life Impact
Endometriosis is not just a “bad period.” It is a life-altering disease that touches every aspect of a person's life — physically, emotionally, socially, and financially. The ripple effects go far beyond pelvic pain or fertility issues:
Productivity Loss: People with endometriosis lose an average of 10 hours of productivity per week, according to multiple studies. This includes missed work, decreased focus, reduced energy, and time lost managing flares or recovering from debilitating pain. Over a year, this translates to hundreds of hours lost; a significant personal and economic burden.
Educational Impact: a leading cause of school absences among teens and pre-teens, often beginning years before a proper diagnosis. Young people may be mischaracterized as dramatic or lazy, when in reality they’re fighting an invisible disease. This disruption can derail academic performance and limit future opportunities.
Emotional Strain: Chronic, untreated pain and invalidation by providers or peers can lead to clinical depression, anxiety, and even trauma-related responses. Many individuals report feeling isolated, hopeless, and dismissed; especially after years of misdiagnosis or ineffective treatments.
Financial Burden: Managing endometriosis often means costly treatments, such as specialist visits, out-of-network excision surgeries, fertility preservation, hormone therapies, complementary care (nutrition, physical therapy), or alternative pain relief. Insurance may not cover necessary care, and the out-of-pocket costs can reach tens of thousands of dollars annually.
Relationship Challenges: The disease’s unpredictability and severity often place strain on relationships. Missed events, canceled plans, changes in intimacy, and constant pain can all create barriers with family, partners, and friends. Many patients report feeling like a burden or misunderstood; further compounding emotional distress.
Healthcare Access: With fewer than 500 well trained excision specialists worldwide and a widespread of misinformation in general gynecology training, many patients go years — or decades — without effective treatment. Navigating the healthcare system becomes an ongoing source of stress, grief, and disillusionment.
Diagnosis and Treatment Challenges
The only definitive way to diagnose endometriosis is through a minimally invasive surgery called a laparoscopy. During this procedure, a specialist looks for lesions, which are then removed via excision and tested for confirmation.
However, not all doctors have the training or expertise to diagnose and treat endometriosis. It's a complex condition requiring a deep understanding of its various forms and manifestations. Only a handful of specialists worldwide possess the necessary knowledge and skills.
Diverse Manifestations
Endometriosis has been found in individuals born male, trans, intersex, fetuses, children, and even animals, highlighting its whole-body impact beyond reproductive and gynecologic boundaries.
The disease's progression is unpredictable, with no discernible growth rate, and its impact varies greatly from person to person. While some may achieve remission with personalized treatment, others may not find complete relief despite surgery and further interventions.
Common Symptoms
Extremely painful periods
Pelvic pain at any time during the month
Pain during or after sexual intercourse
Difficulty getting pregnant (infertility)
Nausea and vomiting
Severe abdominal bloating
Pain during ovulation
Pain or bleeding with bowel movements
Other bowel symptoms (e.g., constipation, diarrhea)
Pain or bleeding with urination
Other bladder symptoms (e.g., urgency, frequent urination)
Lower back pain
Groin area pain
Heavy or irregular periods
Fatigue
Dizziness or Passing out
Less Well-Known Symptoms:
No pain symptoms at all
Chronic pelvic pain independent of menstrual cycles
Hip, leg, back, vaginal, or groin area pain
Nerve pain (sciatic, pudendal, etc.)
Musculoskeletal pain
Pain in shoulders, kidneys, upper abdomen, chest, lungs, diaphragm, or liver, usually coinciding with menstruation
Acid reflux symptoms (GERD) during menstruation
Seeking Expert Care
Finding expert care for endometriosis can be challenging. Resources include:
When meeting a new doctor, consider asking:
What are your beliefs regarding endometriosis?
Everyone has beliefs. Yet, myths and old information lead to poor care. Many still believe endometriosis is just the uterine lining that sheds during menstruation. Studies show it's more complex than that, debunking the idea that "endometriosis is the endometrium." Pregnancy doesn’t fix the disease, and birth control only manages symptoms without treating the lesions. A hysterectomy doesn't cure it, just offers temporary relief. Some doctors are still using outdated information, putting the health of many patients at risk.How long have you been treating endometriosis, and how do you treat it?
An effective endometriosis doctor should have about 3 years of proper experience in treating the disease. New doctors appear often, but managing this condition requires expertise. They shouldn’t just prescribe medication or use ablation methods. Medications only treat symptoms. Ablation uses heat to destroy surface tissue during a laparoscopy, which can cause issues, like making it impossible to take a biopsy and possibly leaving scar tissue or even carbon deposits that end up hiding deeper endometriosis lesions. The first step in treating the disease should be excision removal, as it removes visible endometriosis from the tissue layers.Are you board-certified in FMIGS? How much training have you had with endometriosis, and can you remove it from any part of the body?
Without proper training, effective care and treatment cannot happen. Patients who undergo ablation often still have lesions and symptoms, increasing their reliance on medications. FMIGS training is available at around 53 hospitals in the USA, plus locations in Canada, Brazil, Colombia, Mexico, and Ireland. It provides extra skills to handle complex gynecological issues. Other extra training initiative have started to take place as well.What complex cases have you treated?
Thoracic endo is one of the most top complex cases specialists work on. Nerve, Muscle & many other extra pelvic areas are also not as rare as you'd think.What postoperative treatment do you recommend?
Pain medications are provided for a short time after surgery. Some patients receive a "Lidocaine Pain Ball" that delivers medication directly to the treated area. Pelvic floor physical therapy and specific nutritional plans may also be suggested. The aim is to improve overall treatment for the disease and related gynecological issues. This includes removing tissue and analyzing it for further understanding.How long should I expect to take off work/school and be limited in activities?
Recovery after endometriosis treatment varies for each person. Generally, expect 3 to 6 weeks to recover. If a doctor offers less time, find another one, most focus on ablation. You'll need an estimated 2-3 weeks for basic activities and 6-8 weeks for full function. Remember, minimally invasive surgery doesn't mean minimal work that was done nor a quick recovery. The smaller incision might help healing on the outside, but internal healing takes much longer.
Societal and Cultural Factors
Cultural norms and social biases have significantly influenced the conceptualization and treatment of women's illnesses, including endometriosis. Historically, pelvic pain has been attributed to women's supposed moral failings, leading to delayed diagnoses and inadequate care.
Studies show that 75.2% of patients with endometriosis have been misdiagnosed with another condition, most often by gynecologists (53.2%) and general practitioners (34.4%). This highlights the urgent need for proper education and guidance surrounding endometriosis.
Funding and Research
There is a strong need for better high-quality research studies and direction for the disease, including more minority representation and an overall research focus based on the disease’s correct definition (again highlighted in the “about” section above). In fact, even though the cause/origin of endometriosis is unknown, a majority of funding is still going towards studies based upon an outdated and debunked theory of origin (“retrograde menstruation”).
An example of ethical and accurate research is shown with a controversial study titled "Attractiveness of women with rectovaginal endometriosis: a case-control study", published in 2013 in the journal Fertility and Sterility. The study did face significant criticism for its ethical concerns and questionable scientific value. Critics highlighted that participants did not consent to their attractiveness being assessed, and that the study only included Caucasian women, raising concerns about objectification and lack of diversity. Despite the backlash, the journal did not issue an apology but published a letter from the authors requesting the article's withdrawal.
In the 1990s, Dr. Andrew Friedman, a well-known OB-GYN researcher at Brigham and Women’s Hospital, was discovered to have faked data in at least 17 studies, some focusing on endometriosis treatments like GnRH agonists such as Lupron Depot. Although his work was retracted, parts of that flawed data still affect current treatment practices, resulting in many patients receiving care based on false or incomplete information. This case highlights the need for proper updated research oversight, transparency, and funding. Endometriosis patients deserve care based on solid evidence from independent studies, not outdated pharmaceutical influence or research misconduct.
Furthermore, in 2023, endometriosis received $29M of federal NIH funding, while diabetes, which affects a similar number of women/people assigned female at birth, received $1.2B in funding. This equates to about only $3.22 per endometriosis patient, which is the same amount as a cup of coffee.
The importance of rigorous, ethical research cannot be overstated — especially when millions rely on that science to guide their care.
Community and Support
A lively and supportive community exists on social media and the internet, where many share their personal stories, advocate for change, and help others find needed support. Understanding a complex disease often comes best from those living with it daily. Madison Rodriguez (@hello.lelu), a fellow Invisible Voice columnist and advocate, shares her honest and moving perspective in a featured short on her YouTube Channel.
Endometriosis is a complex, systemic disease that requires increased awareness, better education, and more substantial research funding. By understanding its multifaceted impact and advocating for comprehensive care, we can improve the lives of those affected.
Note: The information provided in this article is for educational purposes only and should not replace professional medical advice. Always consult with a qualified healthcare provider for diagnosis and treatment options.
