Endometriosis affects 1 in 10 women; diagnosis delays worsen pain, outcomes

Endometriosis affects nearly one in 10 women globally, yet it remains one of the most underdiagnosed and misunderstood chronic health conditions. Often dismissed as “normal” period pain, the disease can take years to be correctly identified, leaving millions of women in prolonged pain with limited treatment options.

According to the World Health Organization (WHO), an estimated 190 million women of reproductive age worldwide live with endometriosis. The condition occurs when tissue similar to the lining of the uterus grows outside the uterus, leading to inflammation, scarring, and severe pain.

Despite its prevalence, there is no cure for endometriosis. Current treatments focus on managing symptoms rather than eliminating the disease, making early diagnosis and awareness critical.

Symptoms overlooked

Endometriosis commonly presents with severe pelvic pain, heavy or painful periods, fatigue, pain during intercourse, and infertility. These symptoms can significantly affect daily life, work productivity, and mental health.

One of the biggest challenges is the delay in diagnosis. Studies show that women often wait seven to nine years, or longer, from the onset of symptoms before receiving a confirmed diagnosis. During this period, many consult multiple doctors while their pain is repeatedly minimised.

Severe menstrual pain is frequently normalised, preventing timely medical intervention. This dismissal not only prolongs suffering but also increases healthcare costs and worsens long-term outcomes.

Pain normalisation

Dr Kavya Krishnakumar, obstetrician and gynaecologist, highlighted how social attitudes contribute to delays in care.

“Period pain for a lot of people is considered normal. Because of that, many don’t come to a doctor even with severe pain,” she told The Federal, adding that awareness has improved slightly, with more mothers now bringing their daughters for evaluation.

Dr Vanitha Shri R, obstetrician, gynaecologist and fertility specialist, explained that pain is the most common symptom. “Many young girls come with severe period pain before, during, and even after periods. In reproductive-age women, pain is often accompanied by infertility,” she said.

She noted that possible causes include genetic predisposition, immune dysfunction, and retrograde menstruation, though no single theory fully explains the disease.

Diagnosis challenges

Diagnosing endometriosis remains complex. In many cases, routine ultrasounds fail to detect the condition unless ovarian cysts are present.

Dr Kavya Krishnakumar explained, “Most of the time, you cannot diagnose endometriosis through ultrasound. The only confirmation is through laparoscopy, which is a surgical procedure done under anaesthesia.”

Because laparoscopy is invasive, it cannot be used as a routine diagnostic tool, especially in young patients. This limitation significantly contributes to diagnostic delays.

She added that endometriosis can sometimes present with no symptoms at all and may only be discovered during fertility investigations when couples struggle to conceive.

No definitive cure

There is currently no cure for endometriosis. Available treatments include hormonal therapies to suppress estrogen, pain management, and surgery to remove lesions. These approaches aim to control symptoms rather than eliminate the disease.

Hormonal treatments can cause side effects such as mood changes, weight fluctuations, and bone density loss. Surgical treatment often needs to be repeated due to recurrence, and access to specialized care varies widely.

“Endometriosis only stops progressing when periods stop, which is after menopause,” Dr. Kavya Krishnakumar said. “As long as the ovaries are functioning, the disease can come back.”

Treatment limits

Dr Sandhya Vasan, consultant obstetrician and gynaecologist, emphasised the chronic nature of the condition.

“Even if you remove the uterus and ovaries, a small amount of endometriotic tissue can regrow anywhere in the body,” she said.

She noted that while there is no 100 percent cure, newer hormonal medicines and long-term injections can help maintain remission, especially when diagnosed early.

“The main treatment approach is stopping periods. When periods stop, endometriosis starts shrinking,” she explained.

Diagnostic tools

Currently, there is no single definitive test for endometriosis. Blood tests like CA-125 may help monitor disease activity but are not specific.

Dr Sandhya Vasan said MRI with contrast is the current gold standard for imaging. “It helps identify ovarian cysts, adenomyosis, pelvic adhesions, and intestinal involvement,” she said, adding that hormonal tests cannot detect the condition.

The lack of simple, non-invasive diagnostic tools remains a major barrier to early detection.

Experts also point to a severe lack of research funding. Despite its prevalence and impact, endometriosis receives far less funding than chronic conditions like diabetes or hypertension.

This underfunding slows the development of better diagnostic tools and innovative treatments. Specialists stress that increased investment is essential to reduce diagnosis delays and improve quality of life.

Call for awareness

Health experts emphasise the need for greater awareness, faster diagnosis, equitable access to care, and sustained research funding. Early intervention can help manage symptoms and limit long-term complications.

Women experiencing severe or persistent period pain are urged to seek specialist care rather than dismiss symptoms as normal.

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