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.

This is only for your information, kindly take the advice of your doctor for food, medicines, exercises and so on.   

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What Is Bowel Endometriosis? Symptoms and Treatments for the Condition

Heather Guidone was in her early teens when her symptoms first started. She felt sick to her stomach all the time. Excruciating cramps left her bent over with pain, even when she wasn't on her period. She was frequently nauseous, bloated, and had urgent diarrhea. Sometimes, the pain was so severe that she couldn't get out of bed. "It literally, with no exaggeration, ruled my life," she tells Health.

Although she wouldn't know it for several years, Guidone was suffering from bowel endometriosis.

Endometriosis in general is a relatively common condition. It affects between 10 to 12% of people born with a uterus once they reach reproductive age, according to a paper in the International Journal of Women's Health. Bowel endometriosis—a manifestation of endometriosis that occurs on or around the bowels, is less common, affecting anywhere between five and 12 percent of people who have the disease.

What is bowel endometriosis?

To understand how bowel endometriosis happens, you first have to understand how organs fit together in a human pelvis, Murray Orbuch, MD, assistant professor of gastroenterology at Mount Sinai, tells Health. All of the organs in the pelvic cavity — the bladder, the colon, the rectum, and reproductive organs like the uterus, fallopian tubes, and ovaries — are very tightly packed in.

When someone has endometriosis tissue very similar to the tissue that normally lines the inside of their uterus grows outside the uterus. Most of the time, that endometrial-like tissue starts growing around the ovaries, the Fallopian tubes, and the tissue that lines the pelvis. And it acts just like endometrial tissue is supposed to — it swells, breaks down, and bleeds roughly every 28 days. But because the tissue has nowhere to go, it gets trapped inside the body and causes scar tissue and adhesions.

Bowel endometriosis happens when the endometrial-like tissue grows deeper into the pelvic cavity and forms adhesions on or around the bowel. It's very unlikely that the tissue will grow on the bowel alone, however, so bowel endometriosis is considered "deeply infiltrative endometriosis," Ken Sinervo, MD, Medical Director of the Center for Endometriosis Care. This means that the invading tissue grows not only on reproductive organs, but also on other organs in the pelvic cavity.

When tissue grows on the bowel, the adhesions act a bit like glue and "can tether bits of intestine to itself or other organs and cause a mess," Dr. Orbuch says.

What are the symptoms of bowel endometriosis?

The symptoms Guidone experienced are pretty typical of bowel endometriosis. The most common symptoms, Dr. Sinervo says, are: bloating (aka " endo belly"), abdominal cramping and pain, constipation, diarrhea, painful bowel movements, and nausea and/or vomiting. Some patients also complain of rectal bleeding.

These symptoms can sound a lot like gastrointestinal disorders like irritable bowel syndrome (IBS), inflammatory bowel disease (IBD), or even appendicitis, which is one reason bowel endometriosis often takes a long time to diagnose. "But when we see them accompanied by pelvic pain, painful periods, backache, infertility, painful intercourse, ovulation pain, or leg pain, it's much more likely that the symptoms are the result of endometriosis and not a GI disorder," Dr. Sinervo says.

How is bowel endometriosis diagnosed?

Bowel endometriosis is "tricky to diagnose and tricky to treat," Dr. Orbuch says. Guidone considers herself "lucky" that it took only a few years and a few doctors to get an endometriosis diagnosis in the 1980s. She was living with near-constant pain for all of her teenage years, and had no reason why, but still she's one of the lucky ones.

Even now, she would be considered lucky. Many people with bowel endometriosis wait an average of seven to eight years and go from doctor to doctor, sometimes seeing four to five gynecologists before getting a diagnosis, Dr. Orbuch says.

The struggle to get a diagnosis is, again, partially because symptoms can look like several GI conditions, but also because the medical community is still learning about endometriosis as a disease. Although knowledge is creeping up, Dr. Orbuch says it needs to "creep faster" since living with bowel endometriosis "can wreck someone's life."

"There needs to be better recognition among gynecologists, gastroenterologists, and even pediatricians," he says. "You can't call it IBS and forget it." Red flags should go up if the bowel symptoms seem to get worse on a cyclical pattern corresponding to the patient's period or if the patient is struggling to get pregnant. "I've had more than a few women in their 30s come in with GI symptoms and also infertility and no one ever recognized that they had endometriosis," Dr. Orbuch says.

Once those red flags go off and endometriosis is added to the list of possibilities, doctors might try to get a peek inside your body with imaging technology like an MRI or a transvaginal sonography — a procedure during which an ultrasound probe is placed inside the vagina to take images of reproductive organs from within. However, your doctor might skip the imaging and suggest an exploratory surgery instead. Laparoscopic surgery with a biopsy for confirmation is considered the "gold standard" in diagnosing endometriosis, Dr. Sinervo says. It's a faster, more accurate diagnosis and tells the doctor exactly how much scar tissue and endometrial-like tissue they're dealing with.

Guidone was diagnosed with "old school" laparotomy surgery in the 1980s, but the procedure is less invasive now. During a laparoscopy, "the surgeon will create small incisions around the belly button and put a camera in to visualize the abdominal cavity," Dr. Orbuch says.

How is bowel endometriosis treated and managed?

Sometimes, bowel endometriosis can be controlled with birth control, Dr. Orbuch says. Hormonal birth control like the pill or IUDs override your brain's signal to release the hormones that trigger a period. So doctors might suggest a hormonal birth control option to tamp down your endometriosis symptoms (if your endometrial lining doesn't build, then it doesn't swell, shed, and bleed). Doctors may tell endometriosis patients on the pill to skip the placebo week in order to not trigger hormones.

Much of the time, especially for people whose endometriosis greatly impacts their lives, doctors will suggest surgery. A laparoscopic surgery, similar to the one used to diagnose endometriosis, is used to cut out the invasive tissue and the scar tissue it creates. "The serosal, or outer layer of the bowel, can often be 'peeled off' leaving the muscularis or muscular portion of the bowel undamaged," Dr. Sinervo says.

While words like "peeled off" may sound scary, the surgery can virtually erase endometriosis symptoms or make them much easier to manage. "My excision surgery changed my life," Guidone says. "I'm not in perfect health and will never be; but I'm free of endometriosis symptoms and the remaining issues I have are wholly manageable."

Some ways people manage endometriosis symptoms are with SSRIs — a class of antidepressants that can actually alter your pain threshold — and pelvic floor therapy, Dr. Orbuch says.

Now, Guidone works as the surgical program director at Dr. Sinervo's office to help others recognize and get treatment for their endometriosis, and she's particularly qualified to spread the word about bowel endometriosis. She says, "No one should be missing work, afraid to leave their home, not being able to be out with their family or friends, have their careers or school goals derailed, have to validate their pain and symptoms to others who don't understand or appreciate them, and feel utterly hopeless because of a disease that is actually treatable."

This is only for your information, kindly take the advice of your doctor for medicines, exercises and so on.     

https://gscrochetdesigns.blogspot.com. one can see my crochet creations  
https://gseasyrecipes.blogspot.com. feel free to view for easy, simple and healthy recipes    
https://kneereplacement-stickclub.blogspot.com. for info on knee replacement