Endometriosis affects millions of Indian women. Few know what it is

IVF (in-vitro fertilisation) and PCOS (polycystic ovary syndrome), have been at the centre of conversations of women’s reproductive health for years. They have made their way into gynaecologists’ clinics, social media posts, and WhatsApp groups.  

But even as reproductive health becomes part of the cultural script, endometriosis—marked by chronic pelvic pain and tissue growing beyond the uterus—remains underdiscussed and poorly understood. According to a 2022 PubMed Central report, endometriosis affects around 247 million women globally, 42 million of them  in India alone. That’s over a quarter of the world’s cases. The World Health Organization (WHO) defines endometriosis as “a disease in which tissue similar to the lining of the uterus grows outside the uterus.” 

But that definition barely scratches the surface. It says nothing about the fatigue, the missed diagnoses, the emotional spiral, or years spent being told it’s “just bad cramps”. The real crisis? Fewer than 30 per cent of Indian women are even aware of the condition. The absence isn’t accidental—most don’t even know what to look for.  

What is endometriosis and how does it affect the body?

“Endometriosis is a chronic, often painful condition where tissue similar to the lining of the uterus (endometrium) grows outside the uterus—on the ovaries, fallopian tubes, pelvic lining, and sometimes even beyond,” explains Dr Rohan Palshetkar, a gynaecologist and consultant IVF Specialist at Bloom IVF and Palshetkar Patil Nursing Home. “Unlike the uterine lining, this tissue has no way to exit the body, leading to inflammation, scarring, cysts (endometriomas), and adhesions.”

According to Dr Vaishali Joshi, senior obstetrician and gynaecologist at Kokilaben Ambani Hospital, Mumbai, the exact cause of endometriosis is not known. “It may be immunological, genetic, hormonal, or due to retrograde menstruation, which means during periods the menstrual blood is thrown out of the body through the cervix or neck of the womb. It can also back track in the abdomen through the openings of the fallopian tubes,” she explains. 

In most women, the body naturally clears this tissue. In those with endometriosis, that process fails, allowing these small tissues  to take hold causing pain, inflammation, and swelling. 

“The commonest areas are the ovaries and the ligaments that support the uterus, while the outer surfaces of the small and large bowel, the ureters (the tubes that take urine from the kidneys to the bladder), the bladder or the vagina or surgical scars are relatively uncommon,” adds Joshi. “This misplaced endometrial tissue responds to cyclical hormonal changes in just the same way as the normal lining does. The accumulated blood during the menstruation phase at these abnormal areas can form a ‘chocolate cyst’ or endometrioma. These fibrous bands bind together structures that are normally separate, and by distorting internal organs may interfere with their normal function,” adds Joshi. 

“ENDOMETRIOSIS LINGERS IN YOUR MIND, SHOWS UP IN YOUR RELATIONSHIP WITH YOUR BODY, YOUR PARTNER, AND EVEN WORKOUTS” — Ankita Thadani

Experts note the symptoms are wide-ranging and often dismissed or misdiagnosed. “Common symptoms of endometriosis include pelvic pain, painful periods, heavy bleeding, and pain during sex,” begins Dr Pratima Thamke, consultant obstetrician and gynaecologist, Motherhood Hospital, Kharghar. “The less obvious symptoms can be fatigue, bloating, back pain, or digestive issues that are often neglected or mistaken for other conditions. Endometriosis happens in four stages—minimal, mild, moderate, and severe; the severity of symptoms may not always match with the stage.”

For Ankita Thadani, founder of aromatherapy brand Secret Alchemist, the first red flag was when her period lasted for over 15 days. “It was completely out of the ordinary for me, especially in my early 20s. This had happened in 2013, and it pushed me to visit my gynaecologist. A sonography revealed an 11-cm cyst—something I had never even heard of.” That one moment of listening to her body changed everything and led her to the right course of action. 

On the other hand, for beauty editor and author Vasudha Rai, severe abdominal pain, heavy bleeding and clotting and a seven-day-long menstrual cycle were typical of her periods. “I would pop painkillers, but since I would get my period regularly, a relative who was also a doctor, told me not to worry. However, sometime in 2006, when I was spotting throughout the month, I went to the doctor and discovered that I had grade-4 endometriosis. Perhaps, I went undiagnosed for quite some time.” 

Rai believes the delay in her diagnosis was largely due to how little she and others knew about the condition. 

Endometriosis and PCOS: How overlapping conditions impact women’s health

The uterus might appear normal, but endometriosis can create  a “hostile” environment around it, says Palshetkar, often disrupting one’s physical, mental, and emotional health. At least 97 per cent of the women diagnosed with endometriosis experience intense pelvic pain, for example.

Physically, Rai dealt with severe aches and multiple surgeries, including a hysterectomy, but it was the mental and emotional drain that came as a by-product of repeated hospitalisations and treatments that took a substantial toll. “It impacted my life to a great degree; I was almost scared of making any plan. If holiday plans were being made, I was scared to commit. I would worry about the pain coming back,” she shares. 

The anxiety wasn’t just physical—it crept into Rai’s work life and self-worth too. “Despite backing out of work assignments and taking leaves from the office, I was trying to be very strong. And, no one should be forced to be strong. I would work myself through all the pain because I didn’t want to disappoint anyone. There was a constant sense of guilt, and now that I think about it, it breaks my heart.”

“PHYSICALLY, CHRONIC PAIN AND FATIGUE ARE DEBILITATING. MENTALLY, MANY WOMEN FEEL MISUNDERSTOOD OR DISMISSED, LEADING TO ANXIETY AND DEPRESSION. EMOTIONALLY, REPEATED FERTILITY STRUGGLES COULD BE DRAINING.” — Dr Rohan Palshetkar

In concurrence with Rai, Palshetkar shares, “Physically, chronic pain and fatigue are debilitating. Mentally, many women feel misunderstood or dismissed, leading to anxiety and depression. Emotionally, repeated fertility struggles could be draining. Sexually, pain during intercourse (or dyspareunia) can strain intimate relationships, causing distress and lowered self-esteem.”

Despite an early diagnosis, endometriosis was anything but easy for Thadani. “Physically, I struggled with stubborn abdominal weight that never budged, no matter what I did. It used to affect my confidence until I learned to be kinder to myself. Emotionally and mentally, the pressure was intense—especially with societal expectations around marriage and motherhood. There’s this looming voice that says, ‘You should hurry.’”  

Thadani adds, “Endometriosis lingers in your mind, shows up in your relationship with your body, your partner, and even workouts. Each cycle is a reminder that you’re managing something chronic.” Data corroborates her experience: “Women with endometriosis report feeling dissatisfaction with their appearance relating to weight gain, abdominal bloating, and surgical scars.”

Given how common PCOS is, we asked how its overlap with endometriosis complicates things further. “Endometriosis typically causes painful, heavy, and irregular periods. When coupled with PCOS—which already disrupts ovulation—it creates a dual burden. The hormonal imbalance of PCOS, along with inflammatory lesions of endometriosis, can severely affect fertility and menstrual health,” says Palshetkar. Since endometriosis majorly affects a woman between the period of her menarche and menopause, it is important to be alert to any abnormalities, especially in those with existing conditions like PCOS. 

How endometriosis affects fertility, sex, and reproductive health 

Endometriosis is present in 1 out of 3 women with infertility, 70 per cent of those with unexplained infertility, 30 per cent of adolescent girls with secondary dysmenorrhea, 60 per cent of women with chronic pelvic pain, and 30 per cent of those with adenomyosis—a subset of endometriosis. Because the uterus plays a central role in both sexual and reproductive health, a condition like endometriosis can interfere with both. 

“Sex can be painful for those with endometriosis, mainly during deep penetration, due to inflammation and tissue buildup near the reproductive organs,” says Thamke. In agreement, Palshetkar explains, “Endometriotic lesions on the pelvic lining, ovaries, or vaginal wall can make deep penetration painful. This pain may be sharp, stabbing, or crampy, and it can linger long after intercourse, affecting sexual wellbeing and intimacy.”

That’s the indirect effect. But endometriosis can also directly indirectly affect fertility. “It can make it harder to get pregnant by causing scarring, blocked fallopian tubes, or affecting egg quality. It can lead to hormonal imbalances that interfere with ovulation,” says Thamke.

“Before I even began trying to conceive, I was mindful,” shares Thadani. “I tracked my AMH (Anti-Müllerian Hormone) levels, improved my lifestyle, and ensured I was physically and emotionally ready. For me, pregnancy wasn’t a spontaneous decision—it was a conscious, well-prepared journey. I believe preparation—through diet, exercise, and self-awareness—played a huge role in my becoming a mother.” 

What helped Thadani was that her doctor counselled her through the pregnancy possibilities as well . “I was diagnosed with a chocolate cyst, which medically refers to an endometrioma linked to endometriosis. My doctor, Dr Anahita Pandole, understood the nuances of endometriosis and helped me start that journey with confidence.”

How to manage endometriosis: Treatments, lifestyle changes, and medical options

Like PCOS, endometriosis often requires a mix of lifestyle changes and oral medication. For some, surgery may be necessary.. Either way, substantial awareness and robust medical support are key to treating and managing endometriosis.

Joshi emphasises a holistic approach—starting with lifestyle changes and pain management, followed by hormonal treatments, and, in some cases, surgery to remove endometrial tissue,   “which should only be done through a multidisciplinary approach involving gynaecologists, bowel surgeons, urologists, radiologists, and pain specialists.” 

 “UNDERGOING ABDOMINAL SURGERY ISN’T EASY. AND, IF YOU PLAN ON STARTING A FAMILY, SPEAK TO A SPECIALIST BEFORE SURGERY.” — Dr Manasi Shirolkar

However, it is important to note that surgery doesn’t guarantee a lifetime of relief from endometriosis. “The pain can recur in 8 in 10 women, within two years of surgery. This may be due to endometriosis that was not visible or could not be removed at the time of surgery. The more severe the disease, the more likely it is to risk. As a last resort removal of the uterus, cervix, fallopian tubes, and ovaries (hysterectomy and bilateral salpingo-oophorectomy) may be offered—but this is usually reserved for women who have completed their family.”

Having taken endometriosis-related medicines for three of the past five years, dermatologist Dr Manasi Shirolkar recommends speaking with more than one gynaecologist before considering surgery. “Undergoing abdominal surgery isn’t easy. And, if you plan on starting a family, speak to a specialist before surgery. Unfortunately, many women live undiagnosed with endometriosis—it’s crucial to have that diagnosis so you can get to work on treating it.”

Palshetkar outlines a two-tiered approach to managing endometriosis. In the short term, treatment often includes pain relief through NSAIDs, hormonal therapies like oral contraceptives or GnRH analogs, and lifestyle shifts such as exercise, diet changes, and stress management. For long-term care, he recommends laparoscopic surgery to remove or ablate lesions, fertility support through IVF, continuous hormonal suppression, and consulting a multidisciplinary team that may include gynaecologists, pain specialists, nutritionists, and mental health professionals. 

Palshetkar also recommends following an anti-inflammatory diet—focusing on  omega-3-rich foods, green leafy vegetables, and minimising processed foods. Gentle exercises, adequate sleep, hydration, and stress management can help support the body through flare-ups. He also suggests tracking symptoms using period apps, using heat pads to manage pain, and seeking emotional support, whether through therapy or online communities. 

Endometriosis isn’t just a “period problem”. It affects 1 in 10 women, impacting their work, relationships, mental focus, and sense of self. And yet, many continue to suffer silently, dismissed by a healthcare system and culture that often downplays women’s pain. 

The silence is systematic. What’s needed isn’t just awareness, but accountability and the willingness to take women’s pain seriously—from doctors, partners, families, and employers.