PETALING JAYA: Between 300,000 and 350,000 Malaysian women suffer from endometriosis, a condition causing tissue similar to the lining of the uterus to grow outside of it, resulting in severe pelvic pain and difficulty conceiving.
However, experts say the numbers could be far higher due to under-reporting.
Endometriosis Association of Malaysia (MyEndosis) founder and president Surita Mogan (pic) said the absence of a national register for the disease has led to late diagnoses, adding that having a registry would help monitor cases, address under-reporting and facilitate evidence-based policy development.
Statistics Department records show the birth rate dropped by 10.2% in the second quarter of this year, from 112,197 to 100,732 compared with the same period in 2023, with endometriosis affecting approximately 10% of women of reproductive age, resulting in infertility in some 35% to 50% of such individuals.
“Cultural and religious beliefs label menstrual blood as unclean. This discourages open conversations about menstrual disorders and even discussing the topic is often seen as a sign of weakness. Women’s pain, especially with endometriosis, is frequently overlooked,” Surita said.
Hospital Sultan Abdul Aziz Shah UPM obstetrics and gynaecology specialist and clinical lecturer Nurul Iftida Basri said the most common endometriosis symptoms include pain experienced before or during menstruation.
“Other symptoms are pain in the pelvic area, pain during sexual intercourse, heavy or irregular periods, occasional pain during urination or bowel movement, and difficulty conceiving.
“Normal menstrual pain begins in teenagers a few years after menarche, which is the onset of the first period.
“It eases off as the woman becomes older, whereas endometriosis usually begins slightly later and worsens with time.”
Nurul Iftida advised women to see a gynaecologist for proper assessment as endometriosis may not always show symptoms or appear on ultrasounds.
She said early diagnosis and treatment can prevent the disease from becoming severe and causing future complications.
“Although the disease will last until menopause, one should not be left to suffer with it without proper treatment.
“Endometriosis may cause some women to have difficulty conceiving, while others may not have a problem. While ongoing research is being undertaken to treat and prevent endometriosis, for severe cases, surgery is currently the only option.”
Nurul Iftida said endometriosis sufferers often mistake it for normal menstrual pain although it may be more severe.
“However, if menstrual pain disrupts daily activities, it should be investigated as a potential sign of endometriosis.
“Another misconception is
that ‘teenagers do not have endometriosis’. This is untrue since nobody is too young to have it. While uncommon, it can affect girls at a young age.
“Also, not all women with endometriosis experience infertility. While it can be a challenge for some, many women have gone on to conceive without difficulty.”
Surita added that the association plans to collaborate with medical advisers, hospitals and clinics to open MyEndosis chapters nationwide to facilitate early detection, pain management and physiotherapy, and raise awareness on the challenges faced by those affected.
MyEndosis also called on the government to fund research, establish specialised treatment centres for endometriosis, and ensure the provision of rest facilities, private areas for pain management and flexible working hours.
Collaboration with the Education Ministry on programmes and awareness campaigns would be vital to reducing the stigma and identifying menstrual pain in adolescents. MyEndosis has also launched EndoBrothers, an initiative to educate fathers, husbands and male friends to support women with the disease.
