Living with endometriosis: Women speak out about pain, heavy bleeding, infertility and misdiagnosis
The senior scientist, 44, had longed to conceive again after her daughter was born in 2016 but suffered multiple miscarriages over the years. The hysterectomy ended that hope.
'It was hard to accept that this is really the end. There was always this small hope that I could still get pregnant and everything would go well,' she said.
'You know how sweet it is to have a child, and you want another one but you can't.'
Erdt has Stage 4 endometriosis, the most severe form of the condition. Endometriosis occurs when tissue similar to the uterine lining grows outside the uterus. It can cause menstrual, pelvic and bowel pain, and in some cases, infertility.
She is not alone in this struggle. According to the World Health Organization, endometriosis affects about 190 million women and girls worldwide.
In Singapore, about 10 per cent of women of childbearing age have endometriosis and around one-third of them are unable to conceive, said Dr Kelly Loi, an obstetrics and gynaecology (O&G) specialist at Mount Elizabeth Hospital.
Though prevalent, endometriosis is often overlooked, and many women endure years of agony. As a progressive condition, the delay in diagnosis can lead to more severe symptoms and challenges in family planning.
WHEN ENDOMETRIOSIS GOES UNDIAGNOSED
Erdt said the pain felt like 'someone stabbing [her] and twisting the knife around'.
As her endometriosis progressed, complications arose. Her bowels and right ovary fused to her uterus due to the abnormal growth of her cells, which doctors said resembled 'chewing gum'.
Her uterus also swelled to the size of a 16-week pregnancy due to adenomyosis – a condition where tissue that usually lines the uterus grows into the muscle wall. It often accompanies endometriosis, and can cause heavy, painful periods.
'[Since my hysterectomy], I'm trying to embrace the health I've regained. I had anaemia, having lost so much blood all the time, and inflammation affecting my joints,' Erdt said.
On average, women seek help about two years after symptoms appear, said Dr Ma Li, an endometriosis and reproductive health specialist at Mount Elizabeth Hospital.
'In Asian cultures, we are quite often told that it's normal to have period pain … So a lot of girls try to tolerate the pain as much as they can,' said Dr Ma, who ran the endometriosis clinic at National University Hospital (NUH) from 2015 to 2024.
But even when they do seek help, endometriosis may still go undiagnosed. In some cases, doctors miss signs of the condition.
Dr Ma added that a common mistake medical practitioners make is performing ultrasound scans only in the uterus and ovaries. She found that in about 80 per cent of cases, endometriosis is found elsewhere in the body, including the bladder, bowels and lungs.
Due to limited awareness of the condition among doctors, some patients are also simply prescribed painkillers instead of receiving a proper diagnosis. 'Painkillers just treat the pain. It doesn't treat the disease, so it doesn't stop it from progressing,' she said.
COMMMON SYMPTOMS OF ENDOMETRIOSIS
These include:
Painful menstrual cramps
Heavy menstrual periods
Bleeding or spotting between periods
Pain during or after sex
Pelvic pain
Lower back pain
Discomfort during bowel movements
Infertility
If you have two or more of these symptoms, consider seeing a gynaecologist or an endometriosis specialist for diagnosis and treatment.
There are also resources like KKH's Endometriosis Questionnaire to help you identify and assess endometriosis-associated symptoms.
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"DESPERATE AND HOPELESS"
Delayed diagnosis can be frustrating. Dr Eleanor Loh, 26, visited six doctors over a decade to find answers for her debilitating menstrual pain.
Describing the experience as lonely, the junior doctor said: 'You feel desperate and hopeless when the doctors you see don't know what to do with you, treat you wrongly, or just dismiss you outright.'
It wasn't until 2021, after she was posted to Dr Ma's O&G department at NUH, that she was finally diagnosed with Stage 4 endometriosis.
Another patient, Ivy Li, had such severe pain in her right abdomen that appendicitis was suspected and her appendix removed. It turned out that endometriosis was the cause.
The 44-year-old recalled others telling her after the surgery: ''It's just removing something that's useless.' But it's still a surgery. You're still undergoing anaesthesia.'
Since then, she's had a hormonal intrauterine device inserted into her womb to help reduce the pain and slow the progression of the disease. However, as her adenomyosis worsened, she eventually underwent a hysterectomy at age 42.
Dr Loi added that as endometriosis is a progressive disease, initial investigations may not detect any abnormalities.
Dr Ma noted that diagnosis is often delayed by an average of seven to eight years. 'The message we want to bring across is that it's not normal to have severe period pain. If you have that, please see a specialist.'
THE ROAD TO PARENTHOOD
The physical and emotional toll of endometriosis can influence decisions around having children, whether due to infertility or the potential risks associated with pregnancy.
As one of the most common causes of infertility, Dr Ma said about 40 per cent of endometriosis patients need fertility treatments, such as in vitro fertilisation, to conceive.
She explained that endometriosis can reduce both the quantity and quality of a woman's eggs, leading to 'irreversible damage on fertility'.
Said Dr Loi: 'Endometriosis is a common cause of infertility as it can distort pelvic anatomy, affect ovulation, trigger inflammation, and create an un-optimal environment for fertilisation and implantation.
'Removal of the endometriotic tissue and scar tissue often improves symptoms and fertility.'
Some women with endometriosis may also fear getting pregnant. 'Getting pregnant would be a huge disruption to our reproductive organs,' said endometriosis sufferer Dr Loh.
'Some literature says endometriosis gets better but you never really know how you react on an individual level. And for us who have gotten some modicum of peace from treatment, taking the risk to potentially disrupt that by wanting a child is something that is not an easy to decision to make.'
Dr Ma, however, said it is rare for endometriosis to flare up during pregnancy, as hormonal changes tend to 'quiet' the oestrogen-driven condition's symptoms. Still, she emphasised that pregnancy is not a cure for endometriosis, and that symptoms may return after childbirth.
Endometriosis patients with daughters also worry about passing the condition on to them.
Li, for instance, has begun monitoring her 14-year-old daughter's health since she started menstruating last year.
As for Erdt, the concern lies in how to broach the topic when her now eight-year-old daughter reaches puberty. 'My experience and relationship with having a period affected my [acceptance of] becoming a woman. It was just a very painful, uncomfortable thing … And I'm trying not to pass that frustration onto her.'
FIGHTING FOR CHANGE
Although awareness of endometriosis has grown, societal and systemic challenges remain.
Namira Binte Mohamad Marsudi, who was 28 when diagnosed with Stage 4 endometriosis in 2014, said there's been a shift in the public perception of intense menstrual pain since she began advocating 13 years ago.
The founder of non-profit organisation E for Endometriosis said that at the beginning, everyone she spoke to believed such pain was normal. Now, most people recognise that it's not.
From the support group's first talk in 2015 with just five attendees, E for Endometriosis has since grown into a network of over 2,000 volunteers, raising awareness and providing support for those impacted by the condition.
But the 39-year-old believes there's still a long way to go.
'There is a buzz going on about endometriosis, and people are starting to learn what it is,' she said. 'But it has to be on a constant basis ... if we just let it die down, within just a year, people will start forgetting about it.'
This growing awareness, Namira added, needs to extend to the medical field as well. Even among healthcare professionals, there is a 'lack of consensus on what endometriosis truly is', let alone how best to diagnose or treat the condition.
'Raising awareness isn't just about the public. It's also about ensuring that those entrusted with our care are properly equipped with knowledge, empathy, and up-to-date understanding,' she added.
Professor Chong Yap-Seng, dean of the NUS Yong Loo Lin School of Medicine, said that although endometriosis causes 'massive loss of productivity' in women, there have been limited advancements in its treatment.
This reflects a larger global issue – the gender health gap, where women often receive inferior healthcare compared with men.
He explained that while women live longer than men, they often experience health loss earlier, sometimes as soon as they start their periods. This may be due to conditions associated with menstruation, including anaemia, migraines and endometriosis, which can cause 'significant distress, discomfort and even disability in women'.
'This health loss doesn't necessarily lead to premature mortality [so it's] not taken as seriously or dealt with as efficiently as conditions that are more deadly,' he added, citing cardiovascular diseases and cancer as examples.
FROM ENDOMETRIOSIS PAIN TO PURPOSE
Despite the challenges, more women are turning their experiences into strength. Li, along with Dr Loh and Erdt, are active volunteers with E for Endometriosis.
Li said she is an 'endometriosis warrior' who hopes to help others understand the condition is not 'just in the mind'.
Dr Loh is hoping to specialise in endometriosis and aims to create a safe space for patients to share their struggles. During her three-month rotation at the O&G department, she helped treat more than 150 endometriosis patients and could relate to the women's struggles.
'If they have made that step to come and seek help, they deserve to be heard and taken seriously,' she said.
Erdt is drawing on her expertise in digital health technology for chronic disease management, and working on an app that tracks endometriosis symptoms.
She explained that while recognising the signs is key to proper diagnosis, the challenge lies in women not being aware of the wide range of symptoms or how they evolve over time.
'The strength I find is in the pain I've gone through and just wishing to help so no one needs to go through this alone.'
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