Not every woman remembers her first period, but 36-year-old Namira Binte Mohamad Marsudi cannot forget hers. At age of 11, the initial sharp pain gave way to several days of throbbing cramps, which the Singaporean was told were “normal”. “As I got older, the cramps worsened,” Marsudi says. “During every period, I experienced bloating, nausea, backaches, a prickling sensation in my legs and [dizziness]. When I was 26, I noticed that the pain had spread to my bowel. On two occasions, it got so bad that I almost passed out.” At the time, in 2012, she had graduated from university, a “dream job” as a policewoman and she was in a happy relationship. Even so, she continued to suffer excruciating pain month after month . Her boyfriend then left her, not wanting to be with someone who was “sickly”, and she missed so many days of work that she was eventually advised to leave the police force. That year, Marsudi’s family physician told her that her painful periods were a result of a condition called dysmenorrhoea and was nothing to be alarmed about. Not long afterwards, she went to a public hospital known for its female reproductive care where she was prescribed hormonal and contraceptive medications and painkillers. Everything you need to know about period pain and how to relieve it “I was told that I might have endometriosis and that I ought to have kids because the pain usually disappears after childbirth. But not one doctor could explain my bowel pain,” she says. Marsudi went to a private hospital, thinking that if she paid more, she might get the help she needed. In 2013, she paid S$15,000 (US$11,000) to have a fibroid removed from her uterus, cysts from her ovary and polyps from her uterine lining. She expected complete relief post-operation, but the pain in her bowel persisted. I was suffering, yet I was made to feel that I had an overactive imagination Namira Binte Mohamad Marsudi A visit to a gastroenterologist proved fruitless; after undergoing a colonoscopy, Marsudi was told that there was nothing wrong with her. The doctor even suggested that the pain was all in her head. “I thought I was going crazy,” Marsudi says. “I was suffering, yet I was made to feel that I had an overactive imagination. Things got so bad that I attempted suicide, not once but twice.” This led to a short stay at Singapore’s Institute of Mental Health, during which Marsudi came across Nancy’s Nook Endometriosis Education, a Facebook support group for endometriosis sufferers. Through this group, she found a doctor in Singapore who specialised in the disease. Suicide Prevention Week: experts’ tips on how to recognise someone is at risk The then-28-year-old Marsudi had extensive tests that revealed that she had Stage 4, or deep infiltrating, endometriosis and adenomyosis (when endometriosis develops inside the muscle layer of the uterus). Her endometrial tissue had grown to the extent that it caused part of her bowel and uterus to fuse together. This explained her bowel pain . “The doctor had to scrape part of my bowel wall to remove the growth,” Marsudi explains. It had gone undetected as it had extended into an area that isn’t visible by scopes, ultrasound or scans. Endometriosis is an incurable condition in which the cells of the inner lining of the uterus – the endometrium – implant and grow abnormally in other parts of the body, usually elsewhere in the pelvis, says Dr Michelle Tsui, a Hong Kong-based specialist in obstetrics and gynaecology. Endometriosis is benign and affects 10 to 13 per cent of women of reproductive age. “The abnormally implanted endometrium bleeds monthly during menstrual periods, causing problems such as pain, inflammation and scarring in the affected areas. “If endometriosis develops within an ovary, the blood accumulates and forms an endometriotic cyst called a chocolate cyst. Adenomyosis can cause the uterus to become large with painful and heavy periods.” Women given two days’ paid menstrual leave in Chinese province Common symptoms of endometriosis include: Painful periods that last longer than two days and do not respond to simple painkillers Period pain that radiates down to the legs and/or perineal area Pain when using the toilet, or significant intestinal upset during menstruation Deep pain within the pelvis during intercourse Difficulty conceiving despite regular ovulation Abnormal spotting in between periods Chronic pelvic pain “Chocolate cysts of the ovaries and adenomyosis can also cause a lower abdominal mass that may or may not be painful,” Tsui adds. “Adenomyosis typically causes heavy, prolonged and painful periods. Occasionally, a chocolate cyst may rupture, causing significant acute pain in the lower abdomen.” Endometriosis is not always easy to diagnose. Tsui says that some sufferers are asymptomatic and the disease may only be noted during ultrasound or surgery for other problems. Some cases of pelvic endometriosis are also hard to identify without performing a laparoscopy to look inside the abdomen. The gynaecologist may instead prescribe hormonal treatment if the symptoms are suggestive of endometriosis; a positive response to the treatment can help confirm the diagnosis. Dread Pap smears? The DIY cervical cancer test that puts women in charge “This is why women who experience chronic pain in their abdomen or lower back without a clear cause should be investigated for endometriosis. “Regular gynaecological check-ups starting from a woman’s late 20s and that include a pelvic ultrasound scan will also pick up some otherwise asymptomatic disease,” Tsui says. Chocolate cysts and adenomyosis are usually easily diagnosed on ultrasound, and very occasionally, an MRI scan may be required. Tsui stresses that regular Pap smears do not detect endometriosis. Nobody should be made to feel ashamed for wanting to take control of their health and live a normal life Namira Binte Mohamad Marsudi Not all women with endometriosis have fertility issues . Often, doctors diagnose endometriosis when a woman has her first ultrasound during her pregnancy, says Tsui. And whether endometriosis impacts a woman’s fertility depends on its location and the extent of the scarring. The causes of endometriosis still aren’t fully understood, but multiple genetic, environmental and hormonal factors are involved. A woman with endometriosis may be prescribed painkillers, hormonal treatment and/or surgery. The treatments aim to alleviate symptoms and prevent complications, but also to preserve a woman’s ability to bear children if she has yet to complete her family , Tsui says. Marsudi’s quality of life has improved tremendously since her surgery in 2014. Any pain she experiences is manageable with prescription opioids. Now married, she is working with a fertility doctor to conceive naturally. She is also more active and runs and lifts weights regularly. In 2012, Marsudi founded E for Endometriosis, a blog, that she registered in 2017 as a non-profit organisation advocating for endometriosis awareness. A year later, she started the Singapore Endometriosis Support Group on Facebook. Endometriosis sufferers shouldn’t feel alone in trying to understand or manage their condition, she says, and they should be able to discuss their pain and seek treatment without shame . “Many women with endometriosis hesitate to get treated because they’re afraid of being judged. By raising awareness about the condition [March is Endometriosis Awareness Month] and offering support, I hope to empower them to get the help they deserve. “Nobody should be made to feel ashamed for wanting to take control of their health and live a normal life.” If you are having suicidal thoughts, or you know someone who is, help is available. For Hong Kong, dial +852 2896 0000 for The Samaritans or +852 2382 0000 for Suicide Prevention Services. In the US, call The National Suicide Prevention Lifeline on +1 800 273 8255. For a list of other nations’ helplines, see this page Like what you read? Follow SCMP Lifestyle on Facebook , Twitter and Instagram . You can also sign up for our eNewsletter here .