S'pore woman in pain for 17 years and nobody knew what was wrong

Through most of her 20s, Ms Namira Mohamad Marsudi was in pain almost every day and felt that no one understood what she was going through.

Not only had her agonising period pains since age 11 intensified over the years, but she also suffered a host of baffling symptoms outside her menstrual cycle.

By her mid-20s, she had chronic pelvic pain, severe lower back pain that radiated down her legs, and intense pain during bowel movements. Her belly was so bloated, she appeared pregnant, and she had extreme fatigue leading to brain fog.

Then a sergeant in the auxiliary police force, she took one to two days of medical leave every month to cope.

Over the years, Ms Namira saw many doctors, but none diagnosed the cause of her health woes. Some gave her painkillers or hormonal tablets for dysmenorrhea (menstrual cramps). Several doctors said she should get married as soon as possible, telling her the pain would subside after childbirth.

She sought help at private specialist clinics and underwent gynaecological procedures to remove polyps, uterine fibroids and cysts from her ovaries, but the pain persisted.

Nothing was detected at a colonoscopy and the doctor suggested she was thinking so much about pain that she was manifesting it where there was none.

"Since there was nothing that could explain it and every scan was okay, I started believing there was something wrong with me mentally," Ms Namira, now 39, recalls.

Her parents and friends could not offer support, and her then boyfriend left her because she was "sickly".

In 2014, at age 28, she began to self-harm. Eventually, she realised she needed help and admitted herself to the Institute of Mental Health (IMH).

"I remember wailing and crying at the door, telling the nurses, 'Please make the pain stop'," she says.

During her stay at IMH for less than a month, she was treated for anxiety and depression, which helped her to think logically.

"I made a pact with God and with myself that once I was out of there, I would start advocating about my condition," she says.

Her own research about her symptoms led her to a US-based endometriosis support group, Nancy's Nook, which referred her to Dr Peter Barton-Smith, an endometriosis specialist then practising at Singapore General Hospital.

He diagnosed her with stage four endometriosis that year, ending her 17-year quest for closure.

Higher risk for Asian women

Ms Namira's story is not uncommon and neither is her prolonged search for answers.

Endometriosis is a disease in which tissue similar to the uterus lining grows outside the uterus, leading to pelvic pain and impacting fertility.

It affects one in 10 women of reproductive age globally, says Dr Celene Hui, a consultant from the Minimally Invasive Surgery Unit at the Division of Obstetrics and Gynaecology in KK Women's and Children's Hospital (KKH).

Five to 50 per cent of women with infertility and up to 60 per cent of women with chronic pelvic pain suffer from endometriosis. Asian women are significantly more likely to be diagnosed with endometriosis than white women.

Celebrities who revealed they have the condition include American singer Halsey, British singer Emma Bunton of the Spice Girls, British actress Daisy Ridley of Star Wars fame and American comedienne Whoopi Goldberg.

More women in Singapore have been seeking medical help in recent years for dysmenorrhea and suspected endometriosis, says Dr Hui, without revealing figures.

Due to increased awareness, Dr Fong Yoke Fai, a veteran gynaecologist at Mount Elizabeth Novena Hospital, says his clinic gets five to six patients a day, about double the number a clinic for endometriosis and adenomyosis would have had 15 years ago.

Adenomyosis happens when the endometrial tissue in the lining of the uterus grows into the muscular wall of the uterus. It can have similar symptoms to endometriosis and tends to affect women in their 30s to 50s, although many women he sees have both conditions at the same time, Dr Fong says.

Studies show that it takes seven to 10 years on average for endometriosis to be diagnosed after symptoms appear, and women with the condition see an average of seven doctors for it, Dr Hui notes.

The lack of awareness and presence of non-specific symptoms - painful periods, chronic pelvic pain, fatigue, pain during intercourse, painful bowel movements and difficulty conceiving - are often confused with other conditions like irritable bowel syndrome and pelvic inflammatory disease, making diagnosing endometriosis challenging.

"The main problem affecting early diagnosis is the normalisation of period pain. Bad menstrual cramps are perceived to be a part of growing up that will improve after marriage and pregnancy," Dr Fong says.

This myth is often perpetuated by family members, general practitioners and even specialists with a knowledge gap.

In severe cases, the disease can affect other organs such as the bowel, bladder and ureters as well. Ms Namira's condition, for instance, had spread to her bowels.

Great toll exacted

The long delay in getting the right diagnosis and receiving treatment takes a great toll on women's lives.

Not only do they suffer in silence as their symptoms worsen, but they also experience psychological distress, which affects their relationships and work, Dr Hui says.

In a country that desperately needs more babies, endometriosis' impact on fertility cannot be understated. Dr Hui notes that up to 50 per cent of women with endometriosis find it difficult to conceive.

Dr Fong cites a local study in 2017 he co-authored, which looked at females aged 14 to 25 who underwent surgery due to endometriosis. It found that over 70 per cent had stage three or four of the disease.

"A higher stage of disease means a greater impact on ovarian reserve, pelvic organs such as the uterus or fallopian tubes, as well as quality of life in terms of pain and social and mental well-being," he says.

"Numerous studies have also demonstrated the significant economic impact of endometriosis in relation to loss of productivity, medical leave, and hospitalisation and medical costs."

The World Economic Forum noted in a January 2024 article on its website that endometriosis impacts 190 million women worldwide, causing "significant social, public health and economic implications".

American multinational strategy and management consultancy McKinsey & Company estimates that the market for endometriosis treatments is worth US$180 billion (S$241 billion) to US$220 billion globally, yet it is underserved. There is no cure as yet.

Ms Audrey Tan, 44, struggled for years with severe period cramps and bleeding so heavy, she had to replace heavy-duty sanitary pads every hour.

"There were occasions when I experienced severe pains and went to the hospital's accident and emergency department. But nothing was diagnosed, so I assumed it was all normal," says the sales and marketing manager at insurer AIA Singapore's Life in Group team, who is also a workplace well-being advocate in the company.

After trying for years to get pregnant, she succeeded at age 32, only to discover during her first pre-natal scan that she had a 10cm endometrioma (cyst filled with endometrial fluid) attached to her left ovary.

"Devastatingly, the ultrasound also revealed that my foetus had no heartbeat," she says.

Even as she dealt with the grief that overwhelmed her, she was rushed into surgery - the endometrioma was at risk of rupturing and her pregnancy had to be terminated.

She was given injections to suppress her sex hormones so her body would think it was in menopause, but it caused uncomfortable side effects like intense hot flushes and insomnia.

"Every day was an emotional roller coaster marked by tearful episodes and overwhelming lethargy. It was a difficult few months, but I knew it was necessary to try and get the endometriosis under control," she says.

Ms Tan was told that the treatment might affect her fertility, but conceived naturally shortly after she completed it. She now has two children aged seven and 11, which she says "feels like a miracle".

The good news is that doctors now have more advanced imaging equipment to help with detection and diagnoses, such as KKH's specialised endometriosis pelvic ultrasound scan, which has been offered since 2022.

That said, women should advocate for themselves and not settle for one medical opinion if their symptoms persist, Dr Hui says. They can help their doctors by tracking their pain and symptoms, and request to see a gynaecologist who has experience with endometriosis and may be more likely to recognise subtle signs.

Transforming pain into purpose

Ms Namira, who had been blogging about her symptoms since 2012, turned her blog into E For Endometriosis, an awareness and education platform, in 2015. She registered it as a non-profit in 2017.

Its Singapore Endometriosis Support Group on Facebook now has over 2,000 members.

Members have shared their struggles finding endometriosis-trained professionals, especially in clinics that are the first point of medical contact. Those who can afford it pay out of pocket for laparoscopic surgery to find answers.

"This creates a two-tiered system where only those with financial means can access timely and expert care," Ms Namira says.

Many members had to quit their jobs or change careers because of frequent sick leave or workplace discrimination, she adds. At home, they face marital strain and family members who think they are over-reacting.

Spousal support is critical, says Ms Namira. Her husband, a 40-year-old special needs teacher, actively helps out in her campaigns as an "endo husband", to model the level of support needed. The couple faced heartbreak when Ms Namira became pregnant in their first year of marriage in early 2019, only to lose the baby at 12 weeks.

E For Endometriosis holds free quarterly Zoom sessions to educate its followers. To mark Endometriosis Awareness Month in March, it will be organising a free Zoom talk on March 9 with Dr Ma Li, an endometriosis and reproductive health specialist.

Come May, it will host an inaugural inter-Asia Zoom session with endometriosis advocates from Singapore, Malaysia and Indonesia. Details on its events are available at eforendometriosis.eventbrite.com

Ms Namira, who now works as an administrator in the aquatic industry, urges women with period pain to seek help early.

"Don't be a blind follower. Take control of your narrative by taking charge of your health and making informed decisions."