A Adhesions

Bands of scar tissue that can form due to endometriosis or surgeries. They may bind organs together abnormally, leading to pain and organ dysfunction. Ablation: A surgical technique that destroys endometriosis tissue on the surface of organs, often using heat, laser, or electrical energy. Adenomyosis: A condition where tissue similar to the uterine lining grows into the muscle wall of the uterus, leading to pain and heavy periods

B Bloating ("Endo Belly")

A common symptom where the abdomen becomes visibly swollen due to inflammation, often cyclic and painful. Brain Fog: Difficulty concentrating, remembering, or thinking clearly, often linked to chronic pain, fatigue, or hormonal changes.

C Chronic Pelvic Pain

One of the hallmark symptoms. Pain that persists for 6 months or more, often worsening during menstruation, ovulation, or sexual activity.

D Diagnosis Delay

Endometriosis takes an average of 7–10 years to be diagnosed due to dismissal of symptoms and lack of awareness, even among medical professionals.

Deep Infiltrating Endometriosis:
    1. A severe form of endometriosis where lesions grow more than 5 mm deep into pelvic tissues or organs.
Dyspareunia:
  1. Persistent or recurrent pain during or after sexual intercourse.

E Excision Surgery

The gold standard for treating Endometriosis. It involves precisely removing the lesions from affected areas rather than just burning (ablation) them.

Extragenital/Extrapelvic Endometriosis:
  1. Endometriosis lesions that develop outside the reproductive organs, such as on the bladder, bowel, diaphragm, or in the thoracic cavity.

F Fertility Challenges

Endometriosis is a leading cause of infertility. It may interfere with egg release, tube function, or uterine receptivity. Early excision can improve outcomes.

Fibroids:
  1. Noncancerous growths in the uterus that can cause heavy bleeding, pelvic pressure, or pain

G GnRH Agonists

Medications that lower estrogen levels by switching off ovarian hormone production, used to temporarily control endometriosis symptoms.

GI Symptoms
  1. Many patients experience gastrointestinal issues like constipation, diarrhea, IBS-like symptoms, nausea, especially during their cycle.

H Hysterectomy

A surgery to remove the uterus, sometimes performed to manage severe gynecological conditions.

Hormonal Treatments
  1. Drugs like oral contraceptives, GnRH agonists, and progestins are used to suppress periods but do not treat or remove the disease.

I Invisible Illness

Despite causing severe pain and fatigue, Endometriosis often lacks visible signs or imaging proof — leading to misunderstanding and stigma.

J Juvenile Endometriosis

Endometriosis can begin in adolescence or even childhood. Severe period pain in teens should not be dismissed as “normal.”

K Kisspeptin

Kisspeptin is a peptide involved in reproductive hormone regulation. Studies suggest Kisspeptin dysregulation may contribute to hormonal imbalance and infertility in Endometriosis patients.

It’s an emerging biomarker under study for early detection and reproductive dysfunction.

Krukenberg’s Area / Krukenberg Tumor Association
    1. A type of ovarian tumor that can mimic or coexist with Endometriosis, making accurate histopathological assessment crucial.
Kallikrein–Kinin System
  1. This system regulates inflammation and nociception in Endometriotic lesions. Recent studies show altered Kallikrein–Kinin activity in Endometriosis, contributing to chronic inflammation and pain sensitization.

L Laparoscopy

A minimally invasive surgical procedure used to diagnose and treat Endometriosis. Only excision laparoscopy is considered effective for long-term relief.

Lesions:
  1. Abnormal patches of endometriosis tissue that grow outside the uterus, often causing pain or inflammation.

M Multidisciplinary Care

Best results come from a team approach — gynecologists, surgeons, pain specialists, physiotherapists, dietitians, and mental health experts. Endometriosis is a systemic, estrogen-dependent disease in which ectopic endometrial-like tissue can infiltrate pelvic organs, the bowel, bladder, diaphragm, and even extra-pelvic sites. Because of its multi-organ involvement and complex symptom profile, optimal management often requires a multidisciplinary team.

N Nerve Involvement

Endometriotic lesions can infiltrate or irritate nerves, leading to pain that’s sharp, radiating, or persistent — even if lesions are small or hidden.

O Ovarian Endometrioma

Also called “chocolate cysts,” A fluid-filled ovarian cyst formed by endometriosis tissue, containing old, dark blood that gives it a chocolate-like appearance.

Oophorectomy:
  1. A surgery to remove one or both ovaries, often done to reduce hormone production or treat disease on the ovaries.

P Painful Periods (Dysmenorrhea)

While some period discomfort is common, pain that interferes with daily activities is not normal and must be investigated.

Pelvic Floor Dysfunction:
    1. Difficulty relaxing or coordinating the pelvic floor muscles, often causing pain, pressure, or urinary and bowel problems.
Progestins:
  1. Synthetic hormones similar to progesterone that help thin the uterine lining and reduce endometriosis growth and pain.

Q Quadrant Pain

Endometriosis-related pain can be localized to different abdominal quadrants, depending on lesion sites — right or left lower quadrant pain often mimics appendicitis or ovarian pathology.

Quadratus Lumborum Involvement
  1. The quadratus lumborum (QL) is a deep, paired muscle in the lower back that connects the pelvis to the last rib and lumbar vertebrae. Rarely, deep infiltrating Endometriosis may involve the Quadratus Lumborum muscle, causing flank or back pain often mistaken for musculoskeletal issues.

R Rectovaginal Endometriosis

A severe form where lesions grow between the rectum and vagina, often causing pain during bowel movements or intercourse.

S Superficial Endometriosis

Endometriosis lesions that are located on the surface of pelvic organs or tissues, without deep invasion

Scar Endometriosis:
    1. Endometriosis tissue that implants and grows within surgical scars, commonly after procedures like a C-section.
Stages of Endometriosis
  1. There are four stages (I–IV) based on location, size, and depth of lesions. But stage doesn’t always correlate with pain or severity of symptoms.

T Thoracic Endometriosis

Rare but serious — Endometriosis can reach the diaphragm, lungs, or chest cavity, causing shoulder pain or cyclic breathing issues.

U Ultrasound & Imaging

Transvaginal ultrasound and MRI can help detect certain lesions but may miss deep or microscopic ones. A normal scan does not rule out Endometriosis.

V Vasculogenesis

Vasculogenesis is the formation of new blood vessels from endothelial precursor cells. In Endometriosis, abnormal vasculogenesis supports lesion survival and growth by supplying oxygen and nutrients.

W Wnt Signaling Pathway

The Wnt signaling pathway regulates cell growth, differentiation, and tissue regeneration. In Endometriosis, this pathway is abnormally activated, leading to:

  • Excessive cell proliferation
  • Fibrosis
  • Angiogenesis (formation of new blood vessels)
  • Resistance to apoptosis (cell death)

X Xenograft Models

A xenograft model is a type of experimental setup where human tissue or cells are implanted into another species (commonly mice) to study disease behavior. In Endometriosis research, xenograft models are used to:

  • Observe lesion implantation, angiogenesis, and hormonal response
  • Test new drug therapies and surgical outcomes
  • Understand mechanisms of pain and inflammation
Xenoestrogens
  1. Xenoestrogens are environmental chemicals that mimic estrogen. They’re found in plastics (like BPA), pesticides, cosmetics, and industrial waste. Since Endometriosis is an estrogen-dependent disorder, exposure to xenoestrogens may worsen Endometriosis progression.

Y YAP1 Pathway

The YAP1 (Yes-associated protein 1) pathway is part of the Hippo signaling system, which controls organ size and cell proliferation. In Endometriosis, YAP1 is found to be overexpressed, leading to:

  • Increased cell survival
  • Fibrosis
  • Hormone resistance (particularly to progesterone)
Yolk Sac-Derived Stem Cells
  1. Endometriosis may partly originate from extrauterine stem cells derived from the yolk sac, one of the body’s earliest stem cell sources during development. These progenitor cells can migrate and later transform into endometrial-like cells at ectopic sites.
  2. This theory helps explain why Endometriosis can appear even in women without a uterus (like post-hysterectomy or rare male cases).

Z Zero-Cure Yet

There’s no cure yet — but effective management through excision surgery, holistic care, and lifestyle changes can help patients live full lives.

Zymography
  1. Zymography is a laboratory technique used to measure enzyme activity, particularly Matrix Metalloproteinases (MMPs).
  2. In Endometriosis, MMPs break down extracellular matrix tissue, allowing lesions to invade new sites.
  3. Zymography helps scientists study how Endometriotic lesions invade and spread at the cellular level.

    zzz:
  • 1. What is Endometriosis?
    A chronic, estrogen-dependent condition where tissue similar to the uterine lining grows outside the uterus. It leads to pain, inflammation, scar tissue (adhesions), and in some cases, infertility. Endometriosis is systemic, inflammatory, and often progressive if left untreated.
  • 2. How common is Endometriosis?
    • Global: Affects over 190–247 million women and AFAB individuals (approx. 10% of reproductive-age population).  
    • ?? India: Estimated 42–43 million women live with Endometriosis, many undiagnosed.
  • 3. What are the core symptoms?
        • Severe period pain (dysmenorrhea, not relieved by OTC meds)
        • Chronic pelvic pain (may occur outside periods too)
        • Painful sex (dyspareunia)
        • Painful urination or bowel movements (especially during periods)
        • Infertility
        • Fatigue
        • Abdominal bloating (“endo belly”)
        • Heavy or irregular periods
        • Back pain, leg pain, or nerve pain
        • Nausea, constipation, diarrhea, or other digestive issues

    Additional Symptoms

        • Shoulder or chest pain → if lesions are on the diaphragm or thoracic area (can worsen around periods).
        • Pain while standing or walking → sometimes from deep pelvic lesions or nerve involvement.
        • Sciatica-like symptoms → if endo affects pelvic nerves.
        • Pain during ovulation → due to active ovarian or pelvic lesions.
        • Blood in urine or stool (cyclical, around periods) → when bladder or bowel is involved.
        • Pain radiating to thighs, hips, or buttocks → from adhesions or nerve involvement.
        • Painful pelvic exams → tenderness or nodularity on exam.
        • Irregular spotting or bleeding between cycles.
        • Allergic-type symptoms or immune dysfunction (some women report higher rates of allergies, migraines, autoimmune symptoms).

    Less Common but Reported

    • Shortness of breath or cough with blood → rare, linked to thoracic endo.
    • Painful abdominal scars → if endometriosis grows in surgical scars (like C-section scars).
    • Chronic low mood, anxiety, sleep disturbance → often secondary to chronic pain and fatigue.
  • 4. What causes Endometriosis?

    The exact cause is unknown. Possible factors include:

    •  Retrograde menstruation
    •  Genetic predisposition
    •  Immune dysfunction
    •  Hormonal imbalances
    •  Environmental toxins
  • 5. How long does it usually take to diagnose?

    On average, 7–10 years from onset of symptoms — due to misdiagnosis, normalizing of period pain, and lack of trained specialists.

  • 6. Can Endometriosis affect teenagers?

    Yes. This is called Juvenile Endometriosis. Many teens with painful periods are misdiagnosed or ignored, delaying care.

  • 7. At what age does Endometriosis occur?
    •  Can start at menarche (as early as age 10–12)
    •  Common in women aged 20–40 years
    •  Can persist or recur after menopause, especially if severe or untreated
  • 8. How is Endometriosis diagnosed?
    •  Clinical history & pelvic exam
    •  Imaging: TVS (transvaginal ultrasound), MRI (may miss small or deep lesions)
    •  Laparoscopy with biopsy: Gold standard for confirmation
  • 9. Where can Endometriosis occur in the body?
    •  Pelvic organs: ovaries, uterus, tubes, bowel, bladder
    •  Abdominal wall and surgical scars
    •  Diaphragm, chest cavity, lungs (thoracic endometriosis)
    •  Nerves (e.g., sciatic nerve) It’s a whole-body disease, not just a reproductive one.
  • 10. What are the types/classifications of Endometriosis?

    Based on location:

    •  Superficial peritoneal
    •  Ovarian endometrioma (“chocolate cysts”)
    •  Deep infiltrating Endometriosis (DIE)
    •  Extragenital/Extrapelvic: bladder, bowel, diaphragm, thorax
    •  Scar Endometriosis: following C-section or surgery

    Based on stage (ASRM classification):

    •  Stage I (Minimal)
    •  Stage II (Mild)
    •  Stage III (Moderate)
    •  Stage IV (Severe) ? Note: Stage does not always reflect symptom severity.
  • 11. What complications can Endometriosis cause?
    •  Chronic pain
    •  Infertility/subfertility
    •  Ovarian cysts
    •  Bowel or urinary tract obstruction
    •  Adhesions and organ sticking
    •  Nerve entrapment
    •  Mental health issues (anxiety, depression)
  • 12. How does Endometriosis affect fertility?
    •  Can distort reproductive organs
    •  Interfere with ovulation or implantation
    •  Damage egg quality or ovarian reserve
    •  Cause inflammation in the uterus ? Up to 50% of infertile women have Endometriosis.
  • 13. What are the treatment options?

    Medical Management

      •  NSAIDs for pain relief
      •  Hormonal therapy: contraceptives, progestins, GnRH analogues ⚠️ These manage symptoms, not the root cause.

    Surgical Management

      •  Excision surgery (preferred): removes the lesion from the root
      •  Ablation/cauterization: burns the surface — less effective, higher recurrence

    Supportive Care

    •  Pelvic physiotherapy
    •  Nutrition/dietary support
    •  Mental health therapy
    •  Fertility counseling
    •  Pain management team
  • 14. What is the best treatment option?

    Excision surgery by an expert is the gold standard. It addresses all types of lesions and offers better long-term outcomes compared to ablation or hormone suppression alone.

  • 15. Can Endometriosis come back?

    Yes. Recurrence rates vary:

    •  40–50% within 5 years post-surgery (higher with incomplete excision)
    •  Lifelong management may be required in severe cases
  • 16. What is Adenomyosis, and how is it different?
    •  Endometriosis: tissue grows outside the uterus
    •  Adenomyosis: tissue grows within the muscular wall of the uterus Both cause heavy bleeding and pain; adenomyosis often co-exists with Endometriosis.
  • 17. Is Endometriosis hereditary?

    Yes. First-degree relatives have 6–7 times higher risk. Genetics plays a major role in susceptibility.

  • 18. Can Endometriosis be detected on scans?
    •  Ovarian cysts may be seen via ultrasound
    •  Deep lesions need high-resolution ultrasound/MRI
      But imaging often misses small or hidden lesions — laparoscopy is definitive.
  • 19. Can Endometriosis affect your mental health?

    Absolutely. Chronic pain, social isolation, fertility challenges, and being misunderstood lead to:

    •  Depression
    •  Anxiety
    •  PTSD
    •  Body image issues

      ? Psychological support is essential.

  • 20. What lifestyle changes help manage Endometriosis?
    •  Anti-inflammatory diet
    •  Regular, gentle exercise
    •  Stress management (yoga, mindfulness)
    •  Pelvic floor physiotherapy
    •  Avoiding toxins (plastics, processed foods)

      ? These support symptom management, but do not replace excision surgery.

  • 21. Can men or transgender individuals get Endometriosis?
    •  Rare in cisgender men
    •  Transgender men and non-binary people with a uterus and ovaries can have Endometriosis
  • 22. What is the economic impact of Endometriosis?
    •  Global cost exceeds over 80 billion dollars annually in lost productivity and healthcare
    •  Women often face job losses, education disruptions, and high out-of-pocket medical costs

    ? Advocacy for insurance and workplace rights is critical. Many insurance companies classify endometriosis primarily as a fertility issue rather than a chronic, systemic disease, which leads to denial of coverage for excision surgery. This overlooks that endometriosis can cause severe pain, organ damage, and loss of quality of life independent of infertility. As a result, patients often face high out-of-pocket costs for medically necessary treatment.

    Advocacy for workplace rights is essential because endometriosis can cause chronic pain, fatigue, and unpredictable flare-ups that make traditional work structures challenging. Supportive policies like flexible schedules, medical leave, and awareness programs help employees manage their health while remaining productive.

  • 23. Can Endometriosis be prevented?

    There’s no known way to prevent it — but early recognition and expert treatment can stop disease progression and complications.

  • 24. What is EFI’s role in fighting Endometriosis?

    EFI leads India’s mission in:

    •  Raising awareness
    •  Training surgeons (EFI-SCOPE)
    •  Hosting public campaigns (Yellow Ribbon Run)
    •  Advocating for policy change
    •  Supporting patients with accurate information and resources
  • 25. When should someone see a specialist?
    •  If period pain affects daily life
    •  If OTC painkillers stop working
    •  If you have difficulty getting pregnant
    •  If you experience pain during sex, urination, or bowel movements
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