Endometriosis care in India needs to change: Women deserve a diagnosis, not just painkillers
Most of the women I operate on have been in pain since their teens. By the time they reach me, they reach me, they have usually seen several doctors, been prescribed several painkillers, and been told at least once that period pain is normal and they should manage it. Some have been investigated for irritable bowel syndrome. Some have been sent to a psychiatrist. Very few have been examined properly with endometriosis in mind....
That is the real problem in endometriosis care in India. Not a shortage of painkillers. A shortage of people willing to take the pain seriously and then find out what is causing it.
Endometriosis is a chronic inflammatory disease in which tissue similar to the lining of the uterus, causing inflammation, adhesions, scarring and progressive damage to pelvic organs. It affects roughly one in ten women of reproductive age, close to 190 million people worldwide. Diagnostic delay is routinely reported at anywhere between four and twelve years. In my practice, the longer end of that range is far more common.
Pain is a symptom, not a diagnosis
Painkillers have a role. Anti-inflammatories genuinely help a large number of women get through a working day, and I do not quarrel with them. My objection is to the point where a prescription becomes a substitute for diagnosis.
If a woman needs medication every month to function, that is not a treated patient. That is an undiagnosed one. Pain severe enough to interrupt work, sleep, intimacy, mobility or education deserves an explanation , not just suppression.
Hormonal therapy is a treatment, not a diagnostic strategy.
Combined pills, progestins and GnRH analogues can reduce pain considerably, and for many women they are the right long term choice. They are a legitimate part of the toolkit and I use them.
What concerns me is the pattern I see repeatedly. A woman is started on hormonal suppression, feels somewhat better, stops being investigated, and returns five years later with a frozen pelvis, a hydronephrotic kidney or bowel disease that now requires a far bigger operation than it once would have.Medical therapy controls symptoms. It does not stop deep disease from progressing in every patient, and it does not tell you what is actually inside the pelvis. If a woman is put on suppression, someone still needs to know what is being suppressed.
You do not need surgery to diagnose endometriosis
The old dogma that diagnosis requires a laparoscopy has held this field back for decades, and it is out of date. In experienced hands, dedicated pelvic ultrasound and MRI can map deep disease accurately: the extent of a nodule, involvement of the bowel or bladder, ureteric compromise, obliteration of the pouch of Douglas. That mapping is what allows a properly planned operation instead of an exploratory one.
Surgery is not a last resort, and it is not too aggressive
There is a persistent narrative that endometriosis surgery is overdone and too radical. The harm I see is rarely caused by too much surgery. It is caused by inadequate surgery: repeated diagnostic laparoscopies, ablation of the surface of a nodule that extends deep into the rectovaginal septum, a cystectomy done in a way that costs a young woman her ovarian reserve, disease left behind because the surgeon was not equipped to deal with the bowel, ureter or nerve.
Done properly, the objective is complete clearance of disease with maximum preservation of function. That means nerve sparing dissection to protect bladder, bowel and sexual function, preserving ovarian tissue in women who want to conceive, choosing shaving or disc excision over segmental bowel resection wherever the disease permits, and having colorectal and urology colleagues in the room when it does not. Radical about the disease, conservative about the woman. Those two things are not in conflict, and treating them as if they are is what leaves patients under-operated.
The recurrence conversation needs to be more honest
Patients are frequently told that surgery is pointless because endometriosis always comes back. That statement does not survive contact with long-term data. In the ten-year follow-up of the ENDORE randomised trial, most repeat operations were driven by ovarian endometriomas and adenomyosis rather than by recurrence of the deep disease that was originally excised.
This distinction is not academic. It means a well-executed excision offers durable relief, and it means the counselling before surgery should be specific: what is being removed, what is being left, what is likely to need attention later, and what is realistically expected in terms of pain and fertility. Vague reassurance and blanket pessimism are both failures of consent.
One surgeon cannot treat this disease alone
Endometriosis does not respect the boundaries of gynaecology. It affects bowel, bladder, ureters, nerves, and in some women the diaphragm and chest. Its consequences extend into fertility, mental health, work and relationships.
Serious endometriosis care therefore requires a team: gynaecological surgeons, colorectal surgeons, colorectal surgeons, urologists, fertility specialists, pain physicians, pelvic floor physiotherapists and mental health professionals working to the same plan. Pelvic floor physiotherapy and cognitive behavioural approaches are not consolation prizes offered when surgery is refused; they treat the central sensitisation and muscular dysfunction that persist after the disease itself has been cleared. For a woman who wants a child, fertility planning belongs in the first consultation, not the one after surgery.
From managing pain to restoring a life
The question I want this field to stop asking is how to get a woman through her next period. The question worth asking is how she gets the next twenty years back.
That requires believing women the first time they describe their pain, examining properly, imaging competently, operating on them completely when operating is indicated, and building care around what they actually want from their lives rather than around what is convenient to prescribe.
Pain relief matters. But if all we do is dull the pain, we have not treated anything. Good endometriosis care should give a woman an accurate diagnosis, a clear explanation of her own anatomy, a plan built around what she wants from her life, and the chance to stop organising that life around her pain.