It may seem wild, but for many women it can take up 10 years to get an accurate endometriosis diagnosis.1 That’s a decade of persistent pain, disrupted work and school, inconclusive medical tests, and the emotional toll of feeling let down by both your body and the healthcare system.
For many women with endometriosis, symptoms are normalized as a bad period or dismissed as stress, digestive issues, or anxiety.2 During this time, endometriosis can progress, scar tissue can develop, and quality of life can steadily decline.
Understanding what endometriosis is, what it feels like, and how to diagnose endometriosis is one of the most important steps toward better care.
What is endometriosis?
Endometriosis is a chronic inflammatory condition where tissue similar to your endometrium (the lining of your uterus) is growing outside the uterus.3 Even outside the uterus, this tissue responds to estrogen-related changes, leading to inflammation, pain, and scar tissue.3
Usually, endometriosis affects pelvic ligaments and organs like your ovaries, bladder, and rectum.4 It can also show up in places like your abdomen, back, chest, or along surgical scar.
Types of endometriosis
There are a few subtypes, and understanding them may help explain symptoms and guide diagnosis:3
-
- Superficial endometriosis: Lesions on the pelvic lining
- Endometriomas: Ovarian cysts (“chocolate cysts”) sometimes seen on imaging
- Deep endometriosis: Lesions involving pelvic organs
- Extrapelvic endometriosis: Growth outside your pelvis, like the diaphragm
You can have more than one type of endometriosis at the same time. And it’s important to know that pain severity doesn’t always correlate with disease stage or imaging findings.3,4 Even superficial endometriosis can cause significant severe pain, while deep endometriosis may not cause any pain.
Why endometriosis is hard to diagnose
Endometriosis doesn’t look or behave the same in every patient with endometriosis. Research shows that endometriosis can progress, stay the same, or even improve (especially with treatment or hormonal changes).5,3
Endometriosis is now recognized as a chronic pain condition, not just a gynecologic one.3 It can cause chronic, widespread inflammation and alter how your nervous system processes pain, affecting multiple systems including reproductive, digestive, urinary, musculoskeletal, immune, and nervous systems.3 This is one reason why symptoms are often widespread and confusing.
Fortunately, experts are starting to understand endometriosis as a whole-body condition.6
How is an endometriosis diagnosis made?
There isn’t a single blood test or scan that can confirm an endometriosis diagnosis at this time.
While laparoscopy was once considered the diagnostic gold standard, relying on a surgical procedure alone can cause big delays in diagnosis and carries risk, including surgical complications and additional scar tissue.3 Today, diagnosis is often made clinically using:
- Symptom history: Painful periods, pelvic pain, pain with sex, bowel or bladder symptoms, and impact on daily life
- Pelvic exam: May show tenderness, nodules, or limited movement, but a normal exam doesn’t rule it out
- Ultrasound: Detects ovarian endometriomas and signs of deep disease but can’t rule out all forms of endometriosis 3
- MRI: Evaluates deeper disease and related conditions like adenomyosis
- Minimally invasive surgery: Usually reserved for treatment or complex cases, not diagnosis alone
Learn how online pelvic health support fits into diagnosis and care.
What are the symptoms of endometriosis?
Symptoms of endometriosis vary, change over time, and range from mild to totally debilitating.
Pain is often deep, persistent, and exhausting, worsening during your period. But it can also occur throughout the month.
Common symptoms include:3
- Extremely painful periods (dysmenorrhea)
- Heavy or irregular bleeding
- Deep pelvic pain during sex (or after)
- Painful bowel movements (dyschezia)
- Painful urination (dysuria)
- Abdominal bloating (“endo belly”)
- Chronic pelvic or lower back pain
- Fatigue, anxiety, or depression
- Infertility4
These symptoms usually interfere with work, relationships, and long-term functioning.
What causes endometriosis?
The exact cause is unknown. Research suggests a mix of hormonal, immune, genetic, and environmental factors.
One widely accepted theory is retrograde menstruation, where menstrual cycle blood flows backward into your pelvis.3 While this happens in most people who menstruate, in endometriosis those cells may implant and grow to cause symptoms.
Other theories include:
- Transformation of normal pelvic tissue3
- Spread through blood or lymphatic systems3
- Left over embryonic cells7
- Misplaced stem cells7
Is endometriosis genetic?
Yes, genetics seem to play a role in endometriosis.
A family history increases risk,8 and genetic patterns linked to inflammation, hormone regulation, and pain processing have been identified in the research.9 These pathways overlap with other chronic pain conditions like migraines and back pain.9 Genetics may also impact how severe symptoms are and when they begin.
But having a genetic predisposition doesn’t guarantee you’ll develop endometriosis. It simply means your body may be more at risk when combined with things like hormones, immune factors, and your environment.
Can endometriosis cause cancer?
Certain subtypes of endometriosis have been associated with a higher risk of developing ovarian cancer compared to people without the condition.
Research shows that certain subtypes, particularly ovarian endometriomas and deep infiltrating disease, are linked to a higher risk of specific ovarian cancers compared with people without endometriosis.14 Most risk slower-growing type 1 ovarian cancers.15
Research is ongoing to fully understand why endometriosis and cancer are linked and how this should affect screening or care.
Treatment options for endometriosis
There’s no cure for endometriosis, so treating endometriosis focuses on managing symptoms and improving quality of life.
A personalized treatment plan often combines medical care and endometriosis supportive therapy.
Hormone therapy
Hormone therapy may help reduce pain pain but doesn’t cure endometriosis.10 Options can include (but aren’t limited to) birth control pills or gonadotropin-releasing hormone (GnRH) antagonists.11
Pain-relieving medications, like nonsteroidal anti-inflammatory drugs (NSAIDs), may also be used.10 Hormone therapy can have side effects and should be discussed with your provider.
Surgical treatment options
Surgery may be recommended for severe symptoms, fertility concerns, or complications.10 While excision surgery was once considered the gold standard, endometriosis is now recognized as a chronic condition, and repeated surgeries are often approached with caution.
Surgery may also be considered as part of treatment for endometriosis-related infertility, including assisted reproductive technology (ART).6
Supportive therapy for endometriosis
Endometriosis supportive therapy plays an important role in managing symptoms.
These may include:
- Counseling or mental health support for anxiety, depression, or chronic pain12
- Lifestyle and dietary changes to reduce inflammation
- Pelvic floor physical therapy13
Looking for guidance on managing your endo symptoms without surgery?
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Endometriosis supportive therapy and pelvic health
Pelvic floor physical therapy is a key component of endometriosis supportive therapy.13 It addresses muscle tension, nerve sensitivity, posture, breathing, and movement patterns that develop with chronic pain. It complements medical and surgical treatments rather than replacing them.
Pelvic PT can help with things like:
- Reduced pelvic and hip pain
- Improved bowel and bladder function
- Getting rid of pain during sex
- Better core strength and mobility
- Support with managing symptoms long term
You aren’t imagining your endometriosis symptoms
If you think that endometriosis is causing your symptoms, your pain is real and deserves care. Early education, supportive care, and informed advocacy can shorten your road to an accurate endometriosis diagnosis and better care.
If you’re ready for support and education, join the V-Hive today!
References
- De Corte, P., et al. (2025). Time to Diagnose Endometriosis: Current Status, Challenges and Regional Characteristics-A Systematic Literature Review. BJOG.
- Walkden, S. M. (2024). “So It’s Like a Painful Period?” Living with Endometriosis: My Journey. Health Commun.
- Allaire, C., et al. (2023). Diagnosis and management of endometriosis. CMAJ.
- World Health Organization. (2025). Endometriosis.
- Sutton, C. J., et al. Follow-up report on a randomized controlled trial of laser laparoscopy in the treatment of pelvic pain associated with minimal to moderate endometriosis. Fertil Steril.
- Garcia-Velasco, J. A., et al. (2025). Twenty-five years of research in endometriosis. Reproductive BioMedicine Online.
- Tsamantioti, E.S., et al. (2023). Endometriosis. StatPearls.
- Saha, R., et al. (2015). Heritability of endometriosis. Fertil Steril.
- Rahmioglu, N., et al. (2023). The genetic basis of endometriosis and comorbidity with other pain and inflammatory conditions. Nature Genetics.
- Becker, C.M., et al. (2022). ESHRE Endometriosis Guideline Group. ESHRE guideline: endometriosis. Hum Reprod Open.
- Taylor, H.S., et al. (2017). Treatment of Endometriosis-Associated Pain with Elagolix, an Oral GnRH Antagonist. The New England Journal of Medicine.
- Farshi, N., et al. (2020). Effect of self-care counselling on depression and anxiety in women with endometriosis: A randomized controlled trial. BMC Psychiatry.
- Del Forno S., et al. (2021). Assessment of levator hiatal area using 3D/4D transperineal ultrasound in women with deep infiltrating endometriosis and superficial dyspareunia treated with pelvic floor muscle physiotherapy: Randomized controlled trial. Ultrasound Obstet Gynecol.
- Barnard, M. E., et al. (2024). Endometriosis Typology and Ovarian Cancer Risk. JAMA.
- National Institute of Health. (2024). Endometriosis types and ovarian cancer risk.
