Endometriosis is an interesting disease

Heritability, mechanisms, and fertility

• Several comments note strong familial clustering (multiple generations affected), supporting a major genetic component.
• Mechanisms of infertility discussed: damage to ovaries and fallopian tubes, impaired egg release/transport, and possibly a less hospitable uterine environment.
• IVF is reported to work “reasonably well” for many, though with somewhat worse outcomes than other IVF patients.

What endometriosis is, and how weird it gets

• Clarification: it’s endometrial‑like tissue outside the uterus, causing repeated inflammation, fibrosis, adhesions and structural distortion in the pelvis and beyond.
• Comparisons to cancer: lesions acquire similar mutations and immune‑evasion properties yet are classified “benign,” which some see as a blind spot.
• Very rare cases in men are mentioned (including literature citing ~16 cases, often hormone‑related) and a striking case of XY‑karyotype endometriosis after bone marrow transplant.
• A paper linking Fusobacterium in endometrial tissue to endometriosis is cited, underscoring how incomplete current models (e.g. retrograde menstruation) are.

Treatment: hormones, surgery, and experimental ideas

• Many clinicians reportedly default to hormonal suppression (birth control) and then, if that fails, to surgery. Some say it “responds well;” others say not nearly well enough.
• Strong debate over surgical technique:
  • Most OB/GYNs do ablation (burning visible lesions), which critics compare to “cutting grass” and say has high recurrence and more scar tissue.
  • A smaller group specializes in wide excision of diseased and surrounding tissue, with better but not perfect outcomes.
• Hysterectomy is described as life‑restoring in severe, refractory cases but obviously sacrifices fertility and can trigger early menopause.
• Chemotherapy is viewed as too toxic for a benign disease; immunotherapy is being explored. Adhesion‑barrier use during surgery is inconsistently planned.

Diagnosis difficulty and health‑system failures

• Many stories involve years or decades of severe pain dismissed as “normal cramps,” constipation, appendicitis, or psychogenic.
• Several women only got diagnosed after self‑research, AI symptom checkers, or chance encounters with information.
• Newer guidelines (in Europe) recommend MRI as first‑line imaging instead of insisting on laparoscopy, but awareness lags.
• Commenters generalize to a broader pattern: medicine is optimized for the common 80–90% of cases; “tricky” chronic conditions in both sexes are poorly handled by rushed, metric‑driven systems.

Pain, mental health, and lived experience

• Multiple accounts describe pain exceeding other severe experiences (e.g., tonsillitis, other chronic pain disorders), sometimes leading to suicidal thoughts.
• Some note high suicide rates in comparable chronic pain conditions and emphasize how patients must “learn to live in it” over years.
• Repeated reminders that pain is highly individual and comparing whose pain is worse is unhelpful.

Gender bias and research funding debates

• One recurring argument: if men commonly had endometriosis, research and funding would be much higher. This triggers pushback:
  • Others say men’s conditions (e.g., chronic pelvic pain, some autoimmune diseases) are also neglected, and the core issue is scientific difficulty plus system incentives, not only sexism.
  • Examples are raised on both sides: breast vs prostate cancer funding, underfunded COPD, male‑biased animal models that ignore female hormone cycles.
• A long meta‑comment suggests some diseases (especially autoimmune/complex disorders) remain intractable even with large funding, cautioning against attributing everything to malice.

Lifestyle, alternative approaches, and anecdotal “programs”

• A few anecdotes claim large symptom improvements or lesion shrinkage via yoga, dietary changes (unprocessed food, gut focus), stress reduction, and “Eastern” approaches.
• Some individuals now sell or plan programs based on their personal protocols; others in the thread express interest but also caution about paying for yet another unproven solution.
• No controlled data are presented; these are positioned as hopeful but purely anecdotal.

Cultural and informational context

• Commenters note that medical advice on gynecologic and reproductive issues varies widely by country (e.g., sex during menstruation and supposed endo risk in Japanese sources vs English‑language ones).
• Broader examples (infant sleep, food introduction, alcohol in pregnancy, SIDS advice) are used to illustrate that “settled” health guidance is often culture‑ and language‑specific.

Technology and AI in care

• Some see diagnostic LLMs and symptom‑checker AIs as promising, citing at least one case where an AI suggestion led to correct endometriosis diagnosis.
• Others argue high‑quality clinical data, bias control, and alignment with cost constraints are major barriers, and AI may end up reproducing the same median‑case bias as current systems.