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Endometriosis: The Silent Disease Millions of Women Live With — Dr. Abhishek Mangeshikar, Jaslok Hospital
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Endometriosis: The Silent Disease Millions of Women Live With — Dr. Abhishek Mangeshikar, Jaslok Hospital

| 28 July 2026

Endometriosis is more common than diabetes, yet it remains widely misunderstood, underdiagnosed, and often dismissed as "normal period pain." In this episode of Just Health for the People, a public health awareness initiative by Jaslok Hospital, host Jitendra Hariyan speaks with Dr. Abhishek Mangeshikar, an expert excision surgeon trained in advanced gynecologic endoscopy and minimally invasive surgery, who has performed nearly 3,000 procedures and led a multidisciplinary endometriosis practice for over a decade.
 

What Is Endometriosis?

Endometriosis affects approximately one in seven to one in ten women worldwide, making it more prevalent than diabetes — though 27 documented cases have also been reported in men. It is a globally prevalent condition that doesn't discriminate by socioeconomic status, race, or geography.

The condition involves tissue resembling the inner lining of the uterus (the endometrium) growing outside the uterus. Importantly, this tissue can grow almost anywhere in the body — not just in the pelvis. Dr. Mangeshikar notes cases involving the abdominal wall, bladder, diaphragm, chest, and even rare cases in the wrist, eye, and brain.
 

Why "Normal" Period Pain Is a Dangerous Myth

One of the most damaging beliefs — often instilled from adolescence — is that severe period pain is simply "part of growing up" or "becoming a woman." Dr. Mangeshikar is emphatic: any period pain that is debilitating enough to cause missed school, work, or social activities deserves medical attention, not normalization.

This cultural normalization, combined with the myth that pregnancy will "solve" the problem, contributes to a global diagnostic delay of 7 to 10 years on average from symptom onset to actual diagnosis.
 

Why Endometriosis Remains a "Mystery Disease"

Dr. Mangeshikar describes endometriosis as "a specialist disease trapped in a generalist specialization." It is, in his words, more complex than most cancers, yet typically managed within general gynecology rather than by dedicated specialists. He notes a troubling pattern: while gynecologists refer cancer cases to specialists quickly, endometriosis often follows a slower, less rigorous path — starting with denial, then basic pain medication, and eventually redirecting the conversation toward fertility rather than addressing the disease itself.
 

The Three Subtypes of Endometriosis

Understanding endometriosis requires recognizing it rarely exists as a single, isolated problem:

  1. Ovarian cysts ("chocolate cysts") — the most commonly diagnosed form, formed from old blood that turns dark brown, visible on standard imaging
  2. Peritoneal disease — growth on the thin membrane covering the abdominal and pelvic cavity
  3. Deep endometriosis — nodules that can infiltrate deeply into surrounding tissue and organs, described by Dr. Mangeshikar as "weeds growing through concrete"

This distinction matters enormously for outcomes: when only the chocolate cyst is treated (as in general gynecological care), recurrence rates range from 50–80%. When all three subtypes are properly identified and treated by specialists, recurrence rates drop to just 5–10%.
 

Symptoms Beyond Period Pain

Endometriosis symptoms extend well beyond menstrual pain and can occur before, during, or after periods, including during ovulation. Depending on which organs are affected, symptoms can include:

  • Bowel involvement: constipation, loose stools, or both, along with bloating that can mimic pregnancy
  • Urinary tract involvement: bladder or ureter symptoms — in extreme cases, kidney damage severe enough to require removal
  • Chest involvement: monthly lung collapses tied to the menstrual cycle, a condition often unfamiliar even to chest physicians
  • Appendix involvement: commonly affected, sometimes requiring removal by the treating gynecologist
     

Why Diagnosis Takes So Long

Several factors contribute to the persistent invisibility of this disease:

  • Limited medical training historically focused only on visible cysts, not the full range of disease presentations
  • Generalist imaging limitations — routine ultrasounds or MRIs performed without specialist training often only assess the uterus and ovaries, missing deep or peritoneal disease
  • A normal MRI or ultrasound does NOT rule out endometriosis — specialist-trained radiologists and dedicated endometriosis imaging protocols are essential for accurate detection

Dr. Mangeshikar notes that Jaslok Hospital has developed one of the most comprehensive endometriosis MRI protocols in the country, allowing him to plan surgical procedures in detail before a patient even reaches the operating theatre.
 

The Painful Reality: Multiple Doctors, Multiple Failed Surgeries

On average, patients see 5 to 10 doctors and often undergo multiple surgeries before reaching a specialist. Dr. Mangeshikar has treated patients with up to 16 prior surgeries. A common problematic pattern: patients are prescribed birth control or told to pursue pregnancy, sometimes pushed into IVF procedures that can actually worsen the underlying disease through hormonal stimulation — rather than receiving comprehensive surgical treatment first.
 

Five Common Myths About Endometriosis

Dr. Mangeshikar is direct in debunking persistent misconceptions:

  1. "Pregnancy or menopause cures endometriosis" — there is little medical evidence to support this
  2. "Removing the cyst treats the disease" — the cyst represents only about 10% of the disease burden, similar to the visible tip of an iceberg; leaving deeper disease untreated leads to recurrence
  3. "Endometriosis always means infertility" — only 30–40% of patients with the disease are infertile; the vast majority (90–95%) present primarily with pain, which should be addressed on its own merits, not just as a fertility issue
  4. "It's a chronic, recurring disease that isn't worth treating" — with proper specialist excision, recurrence rates are extremely low, and treatment is typically "one and done"
  5. "Painful periods are just part of being a woman" — a belief with no supporting medical evidence, yet still widely perpetuated
     

How Endometriosis Affects Fertility

Endometriosis can impact fertility through multiple mechanisms:

  • Egg quality damage from chocolate cysts themselves
  • Pelvic adhesions caused by chronic inflammation, distorting the normal anatomical relationships between ovaries, fallopian tubes, uterus, and rectum
  • Inflammatory cytokine release, which can interfere with fertilization and embryo implantation

Importantly, Dr. Mangeshikar cautions that pursuing IVF without first treating the underlying disease can worsen it — hormonal stimulation from IVF protocols can exacerbate inflammation, and the egg retrieval process itself can create additional micro-adhesions. He emphasizes close collaboration with fertility teams, including considering egg freezing in appropriate cases to preserve fertility before surgery.
 

The Emotional and Psychological Toll

Years of unresolved, dismissed pain take a significant mental health toll — particularly for adolescents who feel isolated watching peers navigate periods without similar struggles. Dr. Mangeshikar describes the emotional relief many patients feel upon finally receiving a diagnosis — validation that the pain was never "in their head."

A referenced 2019 BBC study of roughly 40,000 endometriosis patients found reports of stunted career and academic progress, relationship strain, with 50% reporting some form of self-harm and 1% having attempted suicide. Pain during intercourse can also place significant strain on relationships, though Dr. Mangeshikar notes encouragingly that many partners today arrive at consultations well-informed and supportive.
 

Why Excision Surgery Matters More Than Cyst Removal

Dr. Mangeshikar strongly advocates for full excision surgery — removing disease from its roots, similar to the surgical approach used for cancer, rather than simply burning or ablating visible lesions. This distinction matters because:

  • Surface-level lesions often extend much deeper than they initially appear, sometimes reaching nerve tissue
  • Burning (ablation) leaves the deeper disease untreated and doesn't provide tissue for pathological diagnosis
  • Burning can actually worsen pain by drawing surrounding tissue — including nerves — toward the treated area

Excision surgery, by contrast, offers a dramatically lower recurrence rate compared to ablation-based approaches.
 

Why International Patients Choose India for Complex Cases

Jaslok Hospital treats patients from across the globe — including the Middle East, UK, and Canada — for complex endometriosis cases. Dr. Mangeshikar explains that with an estimated 250 million patients worldwide (45 million reported in India alone) and only around 300 surgeons globally specializing in endometriosis surgery (with just 40–50 capable of handling advanced disease), patients increasingly need to seek out specialist expertise regardless of geography — and India has emerged as a leading destination for this highly specialized surgical care.
 

The Multidisciplinary Approach to Care

Recognizing that endometriosis is not solely a gynecological disease, Jaslok Hospital's approach involves close collaboration across multiple specialties:

  • Urology (for bladder/ureter involvement)
  • Colorectal and general surgery (for bowel involvement)
  • Thoracic surgery (for chest involvement)
  • Fertility specialists (for reproductive planning and egg freezing)
  • Radiology (for detailed pre-surgical imaging)
  • Pain management and physiotherapy
  • Mental health support (counselors, psychologists, and psychiatrists)

This model — inspired by multidisciplinary approaches originally developed for ovarian cancer care — treats the whole patient, not just the disease.
 

A Remarkable Case: 12-Hour Multidisciplinary Surgery

Dr. Mangeshikar shares a particularly complex recent case: a patient from the Congo who had previously undergone an open surgery abroad that was abandoned once surgeons saw the extent of disease. Upon evaluation at Jaslok, the team discovered an aggressive endometriosis mass that had caused kidney failure on one side, invaded half the bladder, half the vagina, and extended into the rectum.

Using robotic surgery, a coordinated team — including a urologist (who removed the affected kidney), Dr. Mangeshikar (who mobilized the pelvis down to the sciatic nerve and resected half the bladder), and a colorectal surgeon (who rejoined the bowel) — completed a 12-hour procedure. Remarkably, the patient avoided a permanent colostomy bag entirely, was discharged within a week, had her catheter removed in 10 days, and her stent removed a month later.
 

Fertility-Preserving Philosophy

Dr. Mangeshikar challenges the traditional assumption that advanced endometriosis surgery requires removing the uterus and ovaries. Since endometriosis by definition exists outside the uterus, there's typically no justification for uterus removal unless separate conditions like adenomyosis or fibroids are also present. His approach prioritizes treating the disease itself — preserving fertility wherever possible for patients who desire it.
 

What Should Women Do If They Suspect Endometriosis?

Dr. Mangeshikar's practical advice:

  • Research specialists in your area, using legitimate online resources and patient advocacy groups
  • Ask your gynecologist directly: "Could I have endometriosis? Can you refer me to a specialist?"
  • Don't accept "wait it out" or "get pregnant" as a substitute for proper diagnosis and treatment
     

Key Takeaways

Endometriosis is a widespread, often invisible disease that deserves far more clinical attention and public awareness than it currently receives. Painful periods are not something to simply endure, cyst removal alone is not comprehensive treatment, and infertility is not the disease's only — or even most common — consequence. With proper specialist care, comprehensive excision surgery, and a multidisciplinary treatment approach, patients can achieve significantly better outcomes, lower recurrence rates, and improved quality of life.

 

This article is based on an episode of Just Health for the People, a public health awareness initiative by Jaslok Hospital, featuring Dr. Abhishek Mangeshikar, expert excision surgeon specializing in endometriosis. Watch the full video here: Endometriosis Explained by Dr. Abhishek Mangeshikar

 

For consultation regarding endometriosis symptoms, diagnosis, or excision surgery, please reach out to Jaslok Hospital's endometriosis care team.