Endometriosis is a debilitating condition affecting as many as 1 in 10 women. Yet it often takes years to diagnose.

Endometriosis is a chronic condition that can cause painful menstrual cramps, heavy menstrual bleeding (HMB), irritable bowel syndrome (IBS) and infertility, among others. It can drastically reduce quality of life even when treated with surgery or medication.

Although it affects as many as 10% of Asian women of childbearing age, it is often difficult to diagnose as most women experience some discomfort during menstruation. Some doctors  associate endometriosis with older women, while the misconception that ‘girls outgrow menstrual cramps’ can also contribute to a delayed diagnosis.

For Life Magazine puts these misconceptions to rest by interviewing three women on what it is like living with endometriosis.

Joyce Monteiro-Tupaz, homemaker, 48, had lived in Singapore all her life until she moved to Malaysia in 2014 where she picked up sketching and painting. “I first experienced endometriosis symptoms at 14. At the time, I often felt paralysed by HMB and menstrual cramps,” she shared.

“By 18, my symptoms had intensified and progressed to include IBS. The pain also got worse; and it often began from two weeks before my period, and persisted throughout menstruation. I also had severe headaches, which caused insomnia, as well as irregular bleeding which once, lasted an entire month. Endometriosis, as well as other factors, also affected my ability to conceive, leading me to undergo various fertility treatments including intracytoplasmic sperm injection (ICSI) and in vitro fertilization (IVF).”

Thirty-one-year-old key account manager Steffy Lim, used to travel and organise events often for work before the pandemic. To prevent from developing IBS symptoms while on a flight or at an event, she would have light meals two days before the event or flight. She said, “I had my first symptoms at 26, which were infrequent and tolerable at the time. At 28, the pain began to prolong and intensify, beginning as early as two weeks before my period, peaking the first two or three days of my period, and then subsiding. It got so bad at times, that I would break into a sweat and experience constipation and diarrhoea. I also experienced HMB, which could only be contained with frequent changes of 35cm pads.”

On good days where Steffy is not on painkillers, she would play tennis, jog or hike.

Namira Marsudi (Founder of E for Endometriosis, 35) shared, “I first experienced painful menstrual cramps at 11. Over the years the symptoms got worse; in addition to cramps and bloating, I developed backache, broke out in cold sweats and experienced lightheadedness and nausea. At 26, I began experiencing excruciating bowel discomfort, that was so painful, I fainted twice.  I was eventually asked to leave my dream job as a woman’s sergeant as I was taking leave every month due to my condition. I was in and out of hospitals as doctors could not accurately diagnose my condition, which sent me spiralling into feelings of self-loathing and depression.”

Was your condition misdiagnosed?

Joyce was 16 or 17 when she was admitted to hospital for what was thought to be appendicitis. She recalled, “As doctors could not find signs of appendicitis, and believed I was too young to have gynaecological problems, I was sent home with nothing more than painkillers. At 18, I visited a GP due to intense menstrual cramps. However, for me to be able to take the day off, I needed to visit my company’s in-house doctor to approve my medical leave. When I spoke to her, she was dismissive of my symptoms, claiming that some doctors gave out MCs like candy and menstrual cramps were nothing compared to childbirth. This and many other similar experiences made me apprehensive about visiting doctors, though I still did as the pain was too unbearable to ignore.”

“I was suspected of having endometriosis in 2011. However, doctors alleged my condition was bowel-related rather than gynaecological because the pain radiated from my stomach, ” Namira shared.

“I then consulted a private doctor who recommended and performed an expensive surgery on my uterus and ovaries, but still could not confirm the diagnosis. I also underwent an endoscopy, but still could not locate the source of the pain, which led the consulting specialist to assume my symptoms were psychological. Gaslighted into believing the pain was ‘in my head’, I began harbouring suicidal thoughts. I was even admitted to a mental health facility for depression. This was when I promised myself to research on endometriosis and have my condition properly diagnosed and treated once and for all.”

Namira trained intensively in Brazilian Jiu Jitsu but gave it up as it triggered pain. She then fell in love with weights training and joined a fitness pageant in 2016 where she qualified for the heats in Bali. She is still lifting weights and running but not competitively, as a way for her to cope with her condition and staying motivated.

When to see a doctor

Experts recommend all women who experience chronic pain that persists from before the onset of menstruation, to visit a specialist gynaecologist as this may be a sign of endometriosis. Women should also consult a specialist if they experience other symptoms including pain during or after sex, HMB, irregular bleeding, constipation, bloating, nausea, pain with urination and bowel movements, and difficulty conceiving.

Once doctors confirm the diagnosis, they may recommend a range of treatments, from surgery to contraceptive medications, depending on your condition’s severity and unique needs.

Join these endometriosis and HMB support groups:

Singapore Endometriosis Support Group (Facebook)

MyEndoSis Malaysia (Facebook)

E for Endometriosis (Instagram)

Endometriosis Support Group (Facebook)