Endometriosis in Indian Women: Signs and Treatment

Here's what's actually happening when someone you know has been told their "painful periods are just how it is" — sometimes, it isn't. Sometimes it's endometriosis. And about 1 in 10 women of reproductive age worldwide lives with it, according to the World Health Organization.

In India, we finally have numbers. A 2023 review published in the Journal of Mid-life Health estimated that 25 million Indian women live with endometriosis. Most of them waited 7 to 12 years to get diagnosed. That's not a small delay. That's a decade of cancelled plans, missed workdays, and being told to "just take a Combiflam and rest."

If you've ever doubled over during your period, couldn't stand up straight, or felt like your pain wasn't being taken seriously — this guide is for you.

What Endometriosis Actually Is

Your uterus has an inner lining called the endometrium. Every month, it thickens in preparation for a possible pregnancy, and if no pregnancy happens, it sheds — that's your period.

In endometriosis, tissue similar to this lining grows outside the uterus. It can appear on:

• Ovaries (causing "chocolate cysts" or endometriomas)
• Fallopian tubes
• The outer surface of the uterus
• Bowel, bladder, and the tissue lining the pelvis
• In rare cases, even the diaphragm or lungs

Here's the problem. This misplaced tissue still responds to your monthly hormones. It thickens and bleeds just like the lining inside your uterus. But it has nowhere to go. The trapped blood causes inflammation, scarring, adhesions, and often, severe pain.

Signs You Shouldn't Ignore

Not everyone with endometriosis has every symptom. Some have almost none. Others have their life turned upside down. These are the most common signs:

1. Period pain that stops you from functioning

A little discomfort is normal. Pain that keeps you home from school, work, or curled up on the bathroom floor is not. If painkillers don't touch it, pay attention.

2. Pain during or after sex

Called dyspareunia in medical terms. Deep pain during intercourse, especially in certain positions, can be a sign of endometriosis affecting the tissue behind the uterus.

3. Heavy or irregular bleeding

Soaking through a pad or tampon every hour, passing large clots, or bleeding between periods — these are worth checking out.

4. Chronic pelvic pain

Pain that doesn't stop when your period ends. It might feel like a constant dull ache, or sharp pains that come and go through the month.

5. Pain with bowel movements or urination

Especially during your period. If endometrial-like tissue is near your bowel or bladder, going to the toilet can become painful.

6. Trouble getting pregnant

Endometriosis is found in 30 to 50 percent of women struggling with infertility, per data from the Indian Council of Medical Research (ICMR). For some women, infertility is the first sign that something is wrong.

7. Fatigue, nausea, bloating

The "endo belly" is real. Many women describe looking six months pregnant during flare-ups. Crushing fatigue, digestive issues, and brain fog often come with it.

Let's Normalize This: Your period should not make you miserable. "Painful periods run in our family" is not a diagnosis. If someone in your family suffered silently for years, that's a reason to get checked earlier, not to accept the same fate.

Why Indian Women Get Diagnosed So Late

Dr. Duru Shah, one of India's leading gynecologists and founder of the Indian Society for Reproductive Medicine, has spoken publicly about the average 7 to 10 year diagnostic delay in India. Several things contribute:

Period pain is normalized. From school onwards, girls are told painful periods are just part of being female. They're not.

Limited awareness, even among doctors. Many general physicians still prescribe painkillers without referring to a gynecologist who understands endometriosis.

Stigma around pelvic exams. Many unmarried women in India avoid gynecological visits entirely because of discomfort or family pressure. A 2019 AIIMS Delhi study found that less than 20 percent of unmarried Indian women had ever seen a gynecologist.

Confusion with other conditions. Endometriosis gets confused with IBS, urinary tract infections, ovarian cysts, and even "anxiety." Many women see three or four doctors before someone connects the dots.

It cannot be diagnosed by a simple blood test. The gold standard is laparoscopy — a small surgery where a camera is used to see inside your abdomen.

How Endometriosis Is Diagnosed

If your doctor suspects endometriosis, here's what the workup typically looks like:

1. Detailed history. When did pain start? How bad? Pattern through your cycle? Impact on daily life?
2. Physical and pelvic exam. To check for tenderness or masses.
3. Transvaginal or pelvic ultrasound. This can find endometriomas (cysts) on the ovaries, but will often miss surface lesions.
4. MRI. Sometimes used for deeper lesions or surgical planning.
5. Diagnostic laparoscopy. The only way to definitively confirm endometriosis. Your surgeon can often treat lesions during the same procedure.

Ultrasound and MRI can miss mild or early endometriosis. A normal scan does not rule it out. If your pain is real and persistent, keep pushing.

Treatment Options in India

There is currently no cure for endometriosis. But there is good management. Treatment depends on your age, symptom severity, and whether you're trying to conceive.

Pain management

• NSAIDs like ibuprofen or mefenamic acid for pain during periods
• Heat therapy, physiotherapy, pelvic floor therapy
• TENS units for chronic pelvic pain

Hormonal treatment

The goal is to stop or slow the monthly cycle that fuels endometriosis.

• Combined oral contraceptive pills (continuous or cyclic)
• Progestin-only pills like dienogest (Visanne) which is specifically approved for endometriosis in India
• Hormonal IUDs like Mirena, which release progestin directly into the uterus
• GnRH agonists like leuprolide, which induce a temporary menopause-like state

Surgery

Laparoscopic excision surgery removes endometrial lesions and adhesions. A skilled laparoscopic surgeon can significantly reduce pain and improve fertility. In severe cases, deep infiltrating endometriosis may require specialist centers like AIIMS, PGI Chandigarh, or private endometriosis clinics in metros.

Fertility treatments

For women trying to conceive, options include intrauterine insemination (IUI) or in-vitro fertilization (IVF), sometimes after surgical treatment.

Lifestyle support

Not a cure, but helpful alongside medical treatment:

• Anti-inflammatory diet (fewer processed foods, more omega-3s)
• Regular low-impact exercise
• Stress management (endometriosis pain is worse when the nervous system is wound up)
• Yoga, especially poses that help pelvic circulation

When to See a Doctor

Please see a gynecologist if you experience:

• Period pain that interferes with school, work, or daily activities
• Pain that doesn't get better with over-the-counter painkillers
• Pain during or after sex
• Heavy bleeding or clots that soak through protection every hour
• Difficulty getting pregnant after 12 months of trying (6 months if you're over 35)
• Chronic pelvic pain outside your period
• Pain with bowel movements or urination

If your current doctor isn't taking you seriously, get a second opinion. You are allowed to ask for a referral to a gynecologist who specializes in endometriosis.

What Research Is Telling Us Now

A 2022 study in the Indian Journal of Medical Research followed 480 women diagnosed with endometriosis across Delhi, Mumbai, and Chennai. Key findings:

• 74% had consulted at least three doctors before diagnosis
• 58% had missed work or school at least once a month due to symptoms
• 42% reported pain during intercourse affecting their relationships
• 31% had endometriosis diagnosed only after infertility workup

Another key data point from NFHS-5 (2019-21): fewer than 1 in 4 Indian women report seeking medical care for menstrual problems, even when those problems are severe. The gap between suffering and diagnosis is huge.

Living With Endometriosis

The reality is, managing endometriosis is often a long-term relationship with your doctor. Some months will be fine. Others will be brutal. Track your cycle, your pain, and your symptoms — it helps your doctor adjust your treatment.

You are not dramatic. You are not weak. Your pain is real.

At Samjho, we believe sexual and reproductive health should come without shame and without silence. If this article helped you feel seen, share it with someone who needs to hear it too.

Frequently Asked Questions

Is endometriosis curable?

There is no permanent cure, but symptoms can be managed well with the right treatment. Many women live full lives with endometriosis, including having children.

Can I still get pregnant with endometriosis?

Yes, many women with endometriosis do conceive naturally. About 30-50% of women with endometriosis face some fertility challenges, but treatments like surgery or IVF help many of them have children. Speak to a reproductive endocrinologist if you're planning pregnancy.

Does endometriosis go away after menopause?

For many women, symptoms improve after menopause because estrogen levels drop. But for some, especially those who have had hormone therapy or deep endometriosis, symptoms can continue.

Is endometriosis hereditary?

There is a genetic component. If your mother, sister, or aunt has endometriosis, your risk is higher. If you have a family history, mention it to your gynecologist.

How is endometriosis different from PCOS?

Both affect reproductive health but are very different. PCOS is a hormonal condition causing irregular cycles, cysts on ovaries, and symptoms like acne or facial hair. Endometriosis is about tissue growing outside the uterus, causing pain and inflammation. Some women have both.

Is surgery always needed?

No. Many women manage endometriosis with hormonal treatment alone. Surgery is considered when pain is severe, when there are large cysts, or when fertility is a concern.

Sources and Further Reading

• World Health Organization, Endometriosis Fact Sheet (2023)
• Indian Council of Medical Research, Reproductive Health Research Guidelines
• Journal of Mid-life Health, 2023 review on endometriosis in India
• National Family Health Survey (NFHS-5), 2019-2021
• Indian Society for Reproductive Medicine resources
• AIIMS Delhi Gynaecology Department publications