Endometriosis Care in Singapore: Where We Have Progressed, and Where Patients Still Fall Through the Gaps

I have been advocating for endometriosis awareness in Singapore for more than a decade through E for Endometriosis. In that time, I have watched the conversation change.

There has been progress, and that progress matters.

Singapore now has dedicated clinical services for endometriosis. KK Women’s and Children’s Hospital, for example, has an Endometriosis Centre that brings together gynaecologists with endometriosis surgical expertise, pain specialists, colorectal surgery, mental wellness support and nurse coordination. National University Hospital also provides specialised endometriosis care, and Singapore clinicians have developed professional guidance to support the recognition and management of the disease.

So this is not an article arguing that Singapore has no endometriosis care.

We do.

The harder question is whether the systems surrounding that care truly reflect what it means to live with endometriosis over many years. Because endometriosis does not exist only inside a consultation room. It follows a person into school, work, relationships, finances, fertility, caregiving, mental health and family life. It can shape how someone sees her own pain, whether she seeks help, whether she can continue working, whether she can afford another opinion, and whether she feels believed when she finally reaches care.

I write about this from two places at once: as the founder of a patient advocacy movement, and as a patient who has spent most of her life navigating the disease herself.

My symptoms began when I was around 11. Like many girls, I was told painful periods were normal, so I learnt very early to endure. As I grew older, the symptoms became more complicated. They affected my bowels, my legs, my energy, my ability to work and eventually my mental health. I sought help repeatedly, but it took approximately 17 years before I was finally diagnosed in 2014 with Stage 4 deep infiltrating endometriosis and adenomyosis. That diagnosis gave me an answer, but it did not mark the end of the disease.

On 27 July 2026, twelve years after my Stage 4 diagnosis, I underwent major open abdominal surgery for severe endometriosis and adenomyosis. The surgery included a subtotal hysterectomy, bilateral salpingectomy, extensive excision of endometriosis and adhesiolysis. My ovaries were preserved, but my uterus was removed largely because of the extent of the adenomyosis.

With that came something that cannot be captured simply by listing procedures in a medical record: the permanent loss of my ability to carry a pregnancy. That is part of why I believe conversations about endometriosis care have to go beyond diagnosis, medication and surgery. Singapore has made progress. But progress in clinical care does not automatically mean that every part of the patient journey has caught up.

After more than a decade of advocacy, and a lifetime of living with this disease, these are eight areas where I believe the Singapore conversation still needs to go deeper.

1. Diagnostic delay is not only medical. Culture can shape what we learn to endure.

When we talk about delayed diagnosis, we understandably focus on healthcare: whether clinicians recognise the symptoms, whether the right investigations are ordered, and whether a patient reaches someone with the appropriate expertise.

But sometimes the delay begins before a patient ever enters the clinic.

There is a cultural dimension to this that I feel remains underrepresented, particularly when we talk about Asian and Southeast Asian patients. Singapore and ASEAN are extraordinarily diverse, and my experience cannot represent every woman in our region. But many of us grow up around strong ideas about family duty, filial responsibility, marriage, motherhood, harmony and sacrifice. For women especially, there can be an expectation to be selfless, to give more, endure more, and even sacrifice to the point of suffering.

A good daughter gives more. A good wife endures more. A good mother sacrifices more. A good caregiver puts everyone else first. Sometimes, the more we endure quietly, the more devoted or virtuous we are perceived to be. And somewhere along the way, suffering itself can become normalised.

I recognise this conditioning in myself. I became extremely good at tolerating pain. I learnt to mask it, work through it, care for other people through it and tell myself that if I was still functioning, I must be fine. I once experienced an ovarian cyst rupture without seeking medical attention. On another occasion, I had a haemorrhaging gallbladder and did not recognise quickly enough how serious the situation had become.

Those were not both endometriosis events. What connects them is that years of living with severe pain, together with the deeply ingrained idea that “a woman must endure”, had distorted my own understanding of what level of pain should constitute an emergency. I had become so accustomed to pain that I was losing my sense of when pain itself had become dangerous.

And I think that matters when we talk about diagnostic delay. Because sometimes the delay does not begin with a missed scan or an incorrect referral. Sometimes it begins with a woman who has already learnt to minimise her own suffering. Then, if she enters a healthcare system where that suffering is also questioned, normalised or dismissed, something even more damaging can happen: she can begin to lose confidence in her own judgement of her body.

That is where concepts such as medical misogyny and testimonial injustice become important. Testimonial injustice describes what happens when someone's account of their own experience is given less credibility because of assumptions or prejudice. For endometriosis patients, that can look like pain being normalised, emotionalised, underestimated or repeatedly treated as less clinically significant than the patient herself is saying it is. Over time, the question changes from:

“Why am I in so much pain?”

to:

“Am I overreacting?” “Am I weak?” “Is this really bad enough to seek help?”

That is not simply a communication problem. It can become a patient safety problem.

Fertility and motherhood add another cultural layer. Following major surgery in July 2026 for severe endometriosis and adenomyosis, I underwent a subtotal hysterectomy, bilateral salpingectomy, extensive excision of endometriosis and adhesiolysis. My ovaries were preserved, but my uterus was removed largely because of the extent of the adenomyosis. I can no longer carry a pregnancy, and I do not have a living child. I have personally encountered the suggestion that because I am childless, I should compensate by doing more good deeds. I want to make an important distinction here. I am Muslim. This is not an Islamic teaching. What I am describing is a cultural interpretation I have personally encountered, where motherhood, caregiving, sacrifice and a woman's moral worth can become deeply entangled.

Within that narrative, a woman may be seen first and foremost as a bearer of children. If she cannot become a mother, it can be implied that an important part of her purpose, or even one pathway towards being seen as a “good woman”, has somehow been taken away. And then comes the suggestion that she should compensate.

Compensate for what?

For not having children?

For a disease she did not choose?

For losing an organ she fought for years to preserve?

That kind of thinking shows how deeply motherhood can become tied not only to a woman's social identity, but also to perceptions of her worth and goodness.

These are not peripheral cultural issues sitting outside healthcare. They shape how women understand pain. They shape when we ask for help. They shape how long we endure. They shape whether we feel guilty for prioritising ourselves. And they can shape what happens when illness affects fertility, marriage, caregiving and identity.

So if we want to understand diagnostic delay in Singapore and the wider region, we need to look beyond the consultation room. We need to ask what patients have been taught about pain, womanhood, duty, sacrifice and endurance before they ever reach the healthcare system.

Because if a woman has already learnt to minimise her suffering, and then enters a healthcare system that questions her pain too, eventually she may stop knowing what level of suffering deserves help at all. And by then, diagnostic delay is no longer only about time. It is about safety.

2. Singapore has healthcare financing, but endometriosis can still fall between the financial gaps.

Singapore's healthcare financing system can be difficult to understand from outside the country, so it is important to begin by acknowledging what already exists.

We do have financial protection.

Singapore does not operate a system in which all healthcare is simply free at the point of use. Instead, healthcare is financed through a combination of government subsidies, compulsory medical savings, national insurance, out-of-pocket payments and targeted financial assistance.

Under Singapore's S+3Ms framework, MediSave is a mandatory healthcare savings account, MediShield Life provides basic national health insurance protection against large medical bills, and MediFund acts as a safety net for eligible Singapore citizens who still face difficulty paying their remaining bills after subsidies, insurance and MediSave. Public specialist outpatient care is also subsidised. Singapore citizens can receive subsidies of up to 70 per cent at public Specialist Outpatient Clinics, depending on means testing.

So the issue is not that Singapore offers no financial support. The gap is more specific.

Singapore also has a Chronic Disease Management Programme, or CDMP, which allows MediSave to be used for the outpatient management of designated chronic conditions. As of October 2026, 23 conditions are covered, including diabetes, hypertension, osteoarthritis, rheumatoid arthritis, anxiety and major depression. Endometriosis and adenomyosis are not among them. That distinction matters.

Endometriosis may be chronic in the reality of someone's life, but it is not currently recognised within this particular chronic-disease outpatient financing framework. A patient may spend years navigating specialist consultations, scans, medication, procedures, surgery and follow-up. She may still benefit from public subsidies, eligible MediSave use and insurance coverage, but there is no equivalent condition-specific outpatient framework designed around the long-term realities of living with endometriosis. And even that only captures the medical bill.

I think one of the least visible financial consequences of endometriosis is what happens outside the hospital.

A woman may be able to shower independently.

She may be able to dress herself.

She may be able to eat, walk and use the toilet without assistance.

On paper, she may appear completely functional.

But can she commute to work five days a week?

Can she sit through an eight-hour workday while managing severe pelvic pain, bowel symptoms or fatigue?

Can she maintain regular attendance through repeated appointments, pain flares and recovery from surgery?

Can she sustain the same career, working hours or income she had before illness began to dictate the shape of her life?

That is where I think we need to distinguish between being functionally independent and economically functional.

Some Singapore long-term care and severe-disability schemes use Activities of Daily Living, or ADLs, as part of their eligibility criteria. For example, a CareShield Life severe-disability claim generally requires a person to need full assistance with at least three of six basic activities: washing, dressing, feeding, toileting, moving around indoors and transferring between a bed and chair or wheelchair. That is a legitimate measure for identifying the kind of severe disability CareShield Life was designed to support. But endometriosis can create a very different form of functional loss. A person can be completely independent in all six activities and still be unable to sustain reliable employment. She may not meet a severe-disability threshold. She may not require help bathing or feeding herself. And yet her earning capacity may already have been significantly reduced. That is the gap.

Singapore does have broader social assistance. ComCare Short-to-Medium-Term Assistance, for example, can support individuals and families who are temporarily unable to work because of illness or caregiving responsibilities, are seeking work or have low incomes. Social Service Offices assess circumstances more holistically rather than relying only on a single published income benchmark. MediFund similarly considers a person's and family's financial, health and social circumstances.

But these are still general safety nets. They are not designed specifically around the cumulative economic consequences of endometriosis. And this creates an important middle ground that can easily disappear from conventional measures of need. A patient may be not poor enough to qualify for substantial social assistance, yet not “sick enough” under severe-disability criteria to qualify for certain forms of financial support. And still, she may be losing working hours, career progression, income and financial security because chronic illness has made sustained employment increasingly difficult.

She can therefore fall into a space where she is too functional to be considered severely disabled, but too unwell to remain economically secure.

That is why the financial question should not stop at:

“Was her hospital bill subsidised?”

We should also be asking:

How much work has she lost? Has she reduced her hours? Has illness changed the career she could sustain? How much has she spent across years of consultations, scans, medication and surgery? Has she delayed seeking another opinion because she could not afford it? And how much earning capacity has the disease quietly taken away?

Financial capacity can also influence the healthcare pathways available. Singapore's public healthcare system provides highly specialised care. But accessing care through a subsidised route does not necessarily provide the same freedom to select a particular named clinician. At KKH, for example, a referral from a polyclinic to a specific doctor attracts non-subsidised rates. For someone with endometriosis, that distinction can matter. Patients may spend years trying to identify a clinician with the right level of experience for complex disease. The ability to seek additional opinions or choose a particular specialist can therefore become linked not only to medical need, but also to what the patient can afford.

So when we talk about financial protection, I think we need to distinguish between having healthcare financing mechanisms and having a system that fully recognises the economic burden of endometriosis. Singapore has the former. What remains less visible is the cumulative cost of outpatient care, lost income, reduced working capacity, interrupted careers and the financial choices patients are forced to make over years of illness.

A person can be independent in every basic activity of daily living and still have her ability to earn a living profoundly affected. That economic loss is part of the burden of endometriosis too.

3. Multidisciplinary endometriosis care exists. But treating the disease is not always the same as treating the whole person.

One area where Singapore has clearly progressed is multidisciplinary clinical care. KKH's Endometriosis Centre, for example, describes a team that includes gynaecologists with endometriosis surgical expertise, pain specialists, colorectal surgery, women's mental wellness support and dedicated nurse coordination. Physiotherapy, colorectal assessment for bowel involvement and mental wellness consultations are also available.

That infrastructure matters enormously, particularly for people with deep, complex or multi-organ disease.

But I think there is another distinction we need to make. Multidisciplinary disease care is not necessarily the same as multidisciplinary person care. A patient never walks into a consultation room as only “endometriosis”.

She may also be neurodivergent.

She may be living with other chronic illnesses or disabilities.

She may be navigating infertility or pregnancy loss.

She may be struggling with her mental health.

She may be financially strained, caring for ageing parents, raising children, managing work responsibilities or carrying several of these realities at the same time.

All of those things can affect how she experiences illness, how she communicates, what treatment she can tolerate, how easily she can navigate the healthcare system and what she ultimately needs from care.

I came to understand this from another direction. Shortly before turning 40, I was diagnosed with Autism Spectrum Disorder Level 1 by a clinical psychologist. I subsequently had a gynaecologist dismiss that diagnosis, despite having my psychologist's letter, because I apparently did not “look autistic.” I want to be careful here. I do not present one clinician's response as representative of Singapore's healthcare system. But the encounter stayed with me because the feeling was so familiar.

For years with endometriosis, many patients encounter versions of:

“You do not look sick.”

Then, with autism, I encountered:

“You do not look autistic.”

Different diagnoses. The same assumption. That if somebody looks composed, communicates clearly, continues working or appears to be functioning, then perhaps what she is describing cannot be as difficult as she says it is.

But neither endometriosis nor autism has one appearance.

I can communicate articulately and still struggle.

I can advocate publicly and still become overwhelmed.

I can appear composed while experiencing significant pain, sensory distress or exhaustion.

And sometimes, the reason a person appears highly functional is precisely because she has spent years learning how to mask what she is experiencing.

That matters in healthcare.

Neurodivergence can affect sensory processing, communication, executive functioning, pain expression and how someone experiences medical environments. A patient may answer questions clearly during a short consultation while finding appointment scheduling, crowded waiting rooms, unfamiliar procedures, sudden changes, complex instructions or repeated interactions with different healthcare professionals much harder to manage. And neurodivergence is only one example.

Someone with endometriosis may simultaneously be navigating chronic pain, infertility, depression, disability, caregiving, financial strain or another chronic condition. A multidisciplinary surgical team may therefore be exceptionally good at asking:

Which organs are involved?

Which specialists are required?

What treatment does the disease need?

Whole-person care asks another set of questions too:

Who is the person living inside this disease?

What else is she carrying?

What makes healthcare harder for her to access or tolerate?

What matters to her beyond treating the lesions?

And what does a successful outcome actually look like in her life?

Because successful endometriosis care cannot always be measured only by what happens in an operating theatre, on a scan or in a medical record. It also matters whether the patient can function afterwards. Whether she understands her options. Whether she feels safe enough to communicate what she needs. Whether her other diagnoses are taken seriously. Whether treatment fits the life she actually has to return to.

And whether she feels that the healthcare system is treating her, rather than simply treating the disease inside her.

For me, that is the next layer of multidisciplinary care. Not only bringing different specialties around the disease. But bringing the whole person into the centre of the conversation.

4. Awareness has improved. But the language we use has not always kept pace with the science.

Singapore has made progress in recognising endometriosis. A Singapore-developed Endometriosis Diagnosis & Management quick-reference guide, co-authored by clinicians from KKH, NUH and SGH, describes endometriosis as endometrial-like tissue outside the uterus and notes that delays of seven to ten years may occur between symptom onset and diagnosis. A SingHealth article by a KKH clinician has also discussed how limited awareness among both the public and healthcare providers, the normalisation of symptoms and stigma surrounding menstruation can contribute to delayed treatment.

So awareness has moved forward.

But I think there is another part of the conversation that deserves closer attention:

How are we teaching people what endometriosis actually is?

When I began advocating more than a decade ago, endometriosis was commonly explained through two ideas. The first was that it was essentially “the lining of the womb growing outside the womb.” The second was that retrograde menstruation provided the principal explanation for how the disease developed.

Those explanations shaped an entire generation's understanding of endometriosis. But science has continued to evolve.

Some institutional patient-facing language still reflects that older shorthand. KKH's current Endometriosis Centre page, for example, describes endometriosis as the “womb lining responsible for menstruation” being found outside the womb, while the Singapore-developed professional quick-reference guide uses the more precise term endometrial-like tissue outside the uterus. The World Health Organization similarly describes endometriosis as a chronic disease involving tissue similar to the lining of the uterus growing outside the uterus, and states that its causes remain unknown.

That may sound like a small difference in wording.

I do not think it is.

Language shapes understanding. And understanding shapes what we look for.

Retrograde menstruation remains an important scientific hypothesis and may contribute to the development of endometriosis. The theory, associated with John Sampson's work around a century ago, proposes that menstrual material travels backwards through the fallopian tubes into the pelvic cavity. But it does not provide a complete explanation for why endometriosis develops. Studies have documented retrograde menstrual flow in people both with and without endometriosis, and a 2024 systematic review found that the evidence is too variable to conclude that retrograde menstruation is a universal or consistently occurring phenomenon. This means we should be cautious about presenting it as though it were a settled, sufficient explanation for the disease.

Contemporary understanding instead recognises endometriosis as a complex disease whose development is likely influenced by multiple interacting biological mechanisms. The World Health Organization continues to state that the causes of endometriosis remain unknown, while emerging research is examining factors including immune dysregulation alongside other genetic, hormonal, inflammatory and biological mechanisms.

So retrograde menstruation may be part of the story. But it is not the whole story. And I think our education needs to be honest about that complexity. Because if we continue to explain endometriosis primarily through menstrual blood, periods, the womb and reproductive organs, it becomes very easy for society to continue thinking of it as:

“Bad periods.”

An infertility problem.

A gynaecological problem.

Or simply a “women's problem.”

But endometriosis is not necessarily confined to the pelvic cavity. Pelvic disease is by far the most common, but endometriosis has also been reported in multiple sites outside the pelvis and across different organ systems, including the diaphragm, thorax and lungs, abdominal wall and nerves, and in exceptionally rare cases, even the brain.

Those presentations are uncommon, and it is important not to suggest otherwise. But their existence matters. Because they challenge the idea that the boundaries of endometriosis are defined by menstruation, the uterus or the ovaries. A disease involving the bowel may require colorectal expertise. Disease affecting the urinary tract may require urological expertise. Thoracic disease may involve thoracic specialists. Disease affecting nerves may require an entirely different clinical approach. And even within the pelvis, not every patient presents with the stereotypical picture of severe menstrual pain. Some may experience predominantly bowel symptoms. Others urinary symptoms. Some chronic pelvic pain, nerve-related pain, fatigue or combinations of symptoms that do not immediately resemble what they were taught endometriosis was supposed to look like. That is why terminology is not merely an academic argument over words.

The way we describe a disease influences who recognises themselves in the description.

It influences what patients think is worth mentioning.

It influences what families and employers take seriously.

It can influence what healthcare professionals consider when someone's symptoms do not fit the expected picture.

And ultimately, it may influence who gets overlooked.

For me, improving awareness therefore also means separating endometriosis from the idea that it is simply a period problem. That does not mean removing menstruation from the conversation. It does not mean fertility is unimportant. Both remain central parts of the experience for many patients. It means recognising that they are part of the endometriosis story, not the boundaries of it.

More than a decade ago, much of our advocacy necessarily centred on one essential message:

“Severe period pain is not normal.”

That message was important then.

It remains important now.

But I do not think it can be where awareness ends.

The next stage must also say:

“Endometriosis is not only about periods.”

It is a complex chronic disease. Its cause remains incompletely understood. Its manifestations can involve different organs and body systems, and its consequences can extend far beyond menstruation into fertility, mental health, relationships, employment, finances and quality of life.

So as scientific understanding evolves, our language must evolve with it.

Public awareness must evolve.

Patient education must evolve.

Healthcare education must evolve.

Medical training must evolve.

Because when the science moves forward but the language stays behind, we risk continuing to look for an older, narrower picture of the disease. And patients whose endometriosis does not resemble that picture may continue to be missed.

5. Singapore has endometriosis research. But we still do not have a clear national picture of its burden.

Singapore does have research on endometriosis. That distinction is important, because I am not suggesting that nothing is being studied here.

What we do not currently have is a national endometriosis disease registry. Singapore's National Registry of Diseases Office currently manages four national disease registries: cancer, chronic kidney failure, stroke and acute myocardial infarction. Endometriosis and adenomyosis are not among them.

A national registry is not the only way to understand a disease, and the absence of one does not mean that research does not exist. But it does point to a larger question:

How much do we actually know about the burden of endometriosis and adenomyosis in Singapore as a population?

I have not been able to identify comprehensive national population-level data telling us how many people in Singapore are living with these conditions, how long diagnosis takes specifically within our population, or what their cumulative impact is on employment, education, caregiving, mental health, fertility, finances and quality of life. Those are not small gaps in knowledge. Because knowing that a disease exists is very different from understanding what that disease is costing a society and the people living within it.

How many women have reduced their working hours because of endometriosis?

How many have left jobs entirely?

How many years are patients spending searching for a diagnosis?

How much income is being lost?

How often are education, relationships, caregiving responsibilities or family-building affected?

How many patients are living with adenomyosis alongside endometriosis?

And are some groups experiencing longer delays or greater barriers to care than others?

If we do not ask those questions systematically, much of the burden remains invisible. And this can create a cycle.

To make the case for greater research, resources and policy attention, we need evidence showing the scale of the problem. But producing that evidence requires research investment, recognition and systematic data collection in the first place.

So when the national picture is incomplete, it can become harder to demonstrate why the national picture needs to be built.

For me, this is particularly important in an Asian and Southeast Asian context. Global research is invaluable. We absolutely need it. But research questions should also originate from our own societies.

We should be asking:

How does filial responsibility affect whether someone prioritises her own healthcare?

How do expectations around being a daughter, wife, mother or caregiver influence how long women tolerate pain?

Does menstrual stigma affect help-seeking differently across communities?

How does neurodivergence affect communication with healthcare professionals and navigation of medical systems?

How do language, socioeconomic circumstances, religion, family structures and gender expectations interact with chronic illness?

These may sound like social or cultural questions. They are endometriosis questions too. Because disease burden is not measured only by the number of lesions found during surgery or the number of patients attending a clinic. It is also reflected in lost years, lost income, interrupted education, altered careers, delayed diagnoses, fertility journeys, caregiving pressures and lives reorganised around chronic illness. And if those dimensions are not being measured, then part of the burden remains outside the data. That matters because what we measure helps determine what we can see. And what we cannot see clearly is much harder to understand, plan for or respond to.

Global evidence can tell us an enormous amount about endometriosis as a disease. But if Asian experiences remain underrepresented, we risk understanding more and more about the biology of endometriosis while still knowing too little about what it means to live with it here. If we want Singapore's response to reflect Singapore patients, then we also need Singapore data capable of showing us who those patients are, what they are experiencing, and where they are still being left behind.

6. Specialist hospital care exists. But endometriosis still lacks clear national ownership as a broader health issue.

The data gap leads me to another question:

Who is looking at the bigger picture?

Singapore does have specialist endometriosis care within our hospitals. That is important, and I do not want to diminish the work already being done by clinicians and multidisciplinary teams. But specialist hospital care and national ownership are not necessarily the same thing.

What I have not been able to identify, as of October 2026, is a dedicated national government programme or coordinating framework specifically for endometriosis and adenomyosis that brings together the different dimensions of the disease: public awareness, population data, research, healthcare financing, psychosocial support, employment, patient education and the wider social consequences of living with chronic illness.

That distinction matters.

A hospital can treat the patient who reaches its doors.

But who is looking at why she took years to get there?

Who is measuring what the disease has cost her in lost work, income or education?

Who is examining how it affects fertility and family-building at a population level?

Who is connecting the medical, financial, workplace, social and research pieces?

Those questions extend beyond the responsibility of any individual hospital or clinician.

I encountered this gap personally in 2021, when I had an opportunity to speak with representatives from the outreach department of one of Singapore's government health agencies. My understanding from that conversation was that there was no dedicated department specifically responsible for endometriosis. That experience changed the way I thought about advocacy. I began to realise that if endometriosis remains discussed almost entirely within the gynaecology space, many of its wider consequences can remain outside the conversation.

So I started asking a different question:

Where does endometriosis intersect with issues Singapore already considers nationally significant?

One obvious example is fertility and family formation.

Singapore's resident total fertility rate fell to 0.87 in 2025, down from 0.97 in 2024. In April 2026, the Government established an interagency Marriage & Parenthood Reset Workgroup, describing Singapore's declining fertility as requiring a multi-faceted, whole-of-society response. The Workgroup was tasked with examining the wider conditions affecting marriage and parenthood, including social attitudes, workplace practices, government policies, and family and community support.

More recently, the Government has described the Workgroup as examining concerns including work-life demands, the cost of raising children, caregiving, housing, fertility and maternity health, relationship formation and education stress.

This is one reason I have deliberately tried to bring endometriosis into Singapore's wider conversations about fertility and family-building. And I want to be very careful about what I am, and am not, saying. I am not claiming that endometriosis is responsible for Singapore's declining birth rate. We do not have evidence to establish that. In fact, the absence of sufficient Singapore-specific data is precisely why I think the question deserves investigation rather than assumption.

My question is this:

If Singapore is already examining the barriers that affect people's ability or decision to have children and build families, should chronic reproductive diseases such as endometriosis and adenomyosis also be examined within that picture?

Endometriosis can intersect with infertility and reproductive health, and Singapore's own public fertility-health information identifies endometriosis as one of the underlying medical conditions that can affect fertility. But the potential impact can extend further. For some patients, the journey may involve pregnancy loss, repeated surgery, chronic pain, sexual health difficulties, decisions about when or whether to pursue parenthood, fertility treatment, and years of uncertainty about what their bodies will allow.

In my own case, severe endometriosis and adenomyosis eventually formed part of a journey that ended with hysterectomy and the permanent loss of my ability to carry a child. My story does not establish a population-level relationship between endometriosis and Singapore's fertility rate. My story is one story. But it explains why I believe the question should not be absent simply because we do not yet know the answer.

There is also something larger here than fertility. Endometriosis intersects with several issues Singapore already addresses through national policy: healthcare affordability, workforce participation, mental health, caregiving, fertility and family formation. Yet the disease itself can remain positioned primarily as an individual gynaecological condition. That is the disconnect I am trying to highlight.

National ownership does not necessarily mean creating one department solely for endometriosis, nor does it mean that every aspect of the disease must be managed through one programme. What it does mean, to me, is ensuring that somebody is looking across the boundaries.

Across healthcare.

Across research and data.

Across financial impact.

Across employment.

Across mental health and psychosocial support.

Across fertility and family life.

Because patients already live across all of those boundaries. Their disease does not separate itself neatly according to which ministry, hospital, financing scheme or social system is responsible for which part of their life. So I am not asking policymakers to assume that endometriosis is a major contributor to any one national problem. I am asking that we generate the evidence needed to find out.

And if Singapore is already asking what prevents people from remaining economically secure, participating fully in society, accessing appropriate healthcare and building the families they hope for, then chronic diseases such as endometriosis and adenomyosis deserve to be part of those questions too.

Because a disease can be well treated within a hospital and still remain insufficiently understood as a national health issue.

7. Patients continue to perform a great deal of the connective work themselves.

One of the things that has struck me most over more than a decade of advocacy is how much of the practical knowledge surrounding endometriosis still travels patient to patient.

Hospitals provide medical care.

Clinicians diagnose, investigate, prescribe and operate.

But there is another layer of navigation that often happens outside the consultation room.

Patients turn to one another and ask:

Who actually understands this disease?

What questions should I ask at my next appointment?

What is this medication really like to live with?

How did someone else manage work after surgery?

How do I explain this illness to my family?

Where can I find emotional support?

What should I expect if I seek another opinion?

These are not trivial questions. They are often the questions that determine whether someone feels prepared, frightened, isolated, informed or able to make sense of what is happening to her.

E for Endometriosis is entirely volunteer-led, and many of the people contributing to this work are patients themselves. What began for me as a place to process my own experience gradually became a community because other women began telling me that they, too, had felt dismissed, frightened, confused or alone. Over time, I realised that patients were not only looking for information. They were looking for translation. Not simply, What does this medical term mean?

But:

What does this mean for my life?

What might recovery actually feel like?

How might this affect my work?

How do I prepare for an appointment when I have spent years being told my pain is normal?

How do I talk to a partner who does not understand why I am exhausted?

How do I make sense of treatment choices when every option seems to involve a trade-off?

Formal healthcare cannot always answer those questions in the way another patient can.

That is where community becomes important. Patient organisations often become the connective tissue between different parts of the system. They translate complex information into language patients can understand. They create spaces where people can ask questions they may feel embarrassed, frightened or rushed to ask elsewhere. They identify recurring concerns long before those concerns appear in formal data. They help patients understand what options may exist and what questions they may want to raise with their healthcare professionals. They provide something that medicine, however excellent, cannot manufacture:

the reassurance of speaking to someone who has lived through something similar.

But I think we also need to recognise what this means. Much of this work is being carried out by people who are themselves unwell.

Patients supporting patients.

Patients researching after work.

Patients answering messages while recovering from surgery.

Patients organising awareness events, translating information, accompanying one another emotionally and trying to make the healthcare landscape easier for the next person to navigate.

That labour can become almost invisible because it often happens informally, voluntarily and quietly.

Community support is not a replacement for healthcare. Peer experience cannot establish clinical competence. A support group should never become a substitute for medical assessment. But acknowledging those boundaries should not lead us to underestimate the role patient communities already play.

They often see where patients repeatedly become confused.

They hear the questions people are afraid to ask.

They notice where information is not reaching people.

They see the emotional, financial and social consequences of disease that may never appear in a clinical note.

And they often become the bridge between a patient and the formal systems she is trying to navigate.

That is why I believe patient organisations should not be treated as something peripheral to the endometriosis ecosystem.

They are not simply an optional layer of “support” added after the medical work is done.

They carry knowledge.

They carry lived experience.

They identify gaps.

They connect people to information, to one another and, sometimes, back to healthcare itself.

And there is something important we should ask when so much of that connective work is being performed voluntarily by patients:

What does it tell us about the gaps they are having to connect?

For me, the answer is not that patient communities should take on even more responsibility. It is that their knowledge should be recognised, their role should be taken seriously, and the recurring problems they encounter should inform how formal systems improve.

Because patients will always support one another. But they should not have to hold the system together by themselves.

8. Even identifying an "endometriosis specialist" can be confusing for patients.

One of the most practical questions patients ask us is:

“Who is actually an endometriosis specialist in Singapore?”

The answer is more complicated than it sounds. Singapore absolutely has doctors with substantial experience in managing endometriosis. KKH, for example, explicitly identifies gynaecologists with an interest and surgical expertise in endometriosis within its Endometriosis Centre, and specialised endometriosis care also exists elsewhere. But there is an important distinction. Endometriosis itself is not a formally recognised medical subspecialty under Singapore's Specialists Accreditation Board. Obstetrics & Gynaecology is a recognised specialty, but there is no separate nationally regulated designation called “endometriosis specialist.”

From a patient's perspective, that creates a very practical problem. There is no national register where someone can simply search for an endometriosis specialist and immediately understand what level of disease or surgical complexity each doctor routinely manages.

And endometriosis exists across a very wide spectrum. A general gynaecologist may be entirely appropriate for initial assessment and for many aspects of endometriosis management. But deep infiltrating or complex disease can be very different. It may involve the bowel, bladder, ureters, extensive adhesions or multiple organs, and may require advanced surgical experience together with colorectal, urological or other multidisciplinary planning.

The problem is that, from the patient's side, that difference in expertise is not always visible.

So what does she do?

She starts investigating.

She reads hospital biographies.

She looks at surgical interests and training.

She searches overseas directories.

She asks other patients.

She tries to work out whether a doctor regularly manages deep disease, whether they operate with colorectal or urological surgeons when necessary, how much endometriosis surgery they perform, whether they understand adenomyosis, whether they practise the surgical approach she may need, and whether they will listen to what matters to her.

International platforms can sometimes help provide another reference point. For example, as of October 2026, the Singapore directory on iCareBetter, an international platform assessing endometriosis providers, displays one Singapore doctor with its VideoVetted designation.

But it is equally important to explain what that does not mean. It does not mean Singapore has only one competent endometriosis doctor. And it does not mean that a clinician who is absent from iCareBetter is inexperienced or unreliable. iCareBetter is not Singapore's official medical accreditation authority. Participation is voluntary and involves an application process. Its video-vetting pathway requires surgeons to submit full surgical videos for peer review, alongside criteria relating to endometriosis-focused surgical experience and advanced training. A voluntary international directory therefore cannot be treated as a complete census of endometriosis expertise in Singapore.

And this leaves patients piecing together multiple sources of information simply to answer what sounds like a straightforward question:

Who has the level of expertise my disease requires?

That is one reason community knowledge becomes so influential. Patients frequently turn to other patients to understand not only who may have relevant experience, but also who communicates well, who takes symptoms seriously, who explains options clearly and who involves patients meaningfully in decisions. Peer recommendation cannot prove clinical competence. But the fact that patients need to perform this much detective work tells us something about transparency and navigation.

Patients should not have to become informal investigators simply to understand what level of expertise they may need and where to find it.

The goal is not to create a hierarchy in which only one type of doctor is considered trustworthy. It is to make levels of expertise more transparent. Someone with suspected or relatively straightforward disease may need one level of care. Someone with severe, recurrent or multi-organ endometriosis may require another. Patients should be able to understand that distinction without already needing specialist-level knowledge themselves.

There is also a financial dimension. Singapore's public healthcare system provides highly specialised care, including through subsidised pathways. But access through a subsidised route does not necessarily provide the same freedom to choose a particular named clinician. At KKH, for example, a polyclinic referral to a specific doctor is classified as non-subsidised. That does not mean subsidised patients receive inferior care. But for someone who has spent years trying to identify a particular clinician with experience relevant to the complexity of her disease, choosing that named specialist may affect the financial pathway available to her.

So the question is not simply:

Does endometriosis expertise exist in Singapore?

It does.

The more important questions are:

Can patients identify the level of expertise they need?

Can they reach it?

Can they choose it within the financial pathway available to them?

And should access to appropriate expertise depend on how knowledgeable, connected or financially resourced the patient already is?

For someone with severe disease, the consequences of getting those questions wrong can last for years.

Where does this leave us?

The Singapore endometriosis story is not a story of absence.

We have skilled clinicians.

We have specialist hospital services.

We have multidisciplinary care.

We have public healthcare subsidies and national healthcare financing mechanisms.

We have more awareness than when I first began advocating more than a decade ago.

There has been progress. But progress does not mean the gaps have disappeared. A patient can still fall between them.

She may grow up believing that women are supposed to endure pain quietly.

She may appear outwardly independent while gradually becoming unable to sustain employment.

She may live with several conditions that do not fit neatly within one medical specialty.

She may encounter language that still teaches her to understand endometriosis primarily through menstruation.

She may struggle to work out which clinician has the level of experience required for the complexity of her disease.

She may discover that choosing that clinician changes the financial pathway available to her.

And when the formal system does not connect all of those pieces, she may turn to other patients to help her navigate what comes next. None of this means Singapore has failed to provide endometriosis care. But together, these gaps show why having care available is not the same as having a system that fully understands what living with endometriosis requires. That is why I believe the next stage of endometriosis awareness in Singapore has to go much further than:

“Severe period pain is not normal.”

That message remains important. But awareness now also has to ask:

What has a woman been taught about suffering before she ever seeks help?

Can she afford the care and choices she may need?

Can she continue working while living with chronic illness?

Does healthcare see the whole person rather than only the diagnosis?

Does the language we use reflect what science now understands about the disease?

Do we have enough Singapore data to understand who is affected, how long they wait for diagnosis and what the disease is costing them?

Who is looking across the gaps between healthcare, research, financing, employment, fertility, family life and psychosocial support?

And can a patient identify and reach the level of expertise she needs without first having to become an expert herself?

These are not separate conversations. They are different parts of the same patient journey.

For more than a decade, I have watched the conversation around endometriosis in Singapore change. We have moved forward. We talk more openly about painful periods. We have specialist services. We have clinicians with experience in complex disease. We have multidisciplinary care. We have better awareness than when I first began advocating. But perhaps the next stage of progress requires us to ask a different question.

Not simply:

“Do we have endometriosis care?”

But:

“What does it actually take for a person with endometriosis to find that care, afford it, navigate it, be believed within it, and continue living her life around it?”

Because the patient does not stop being a patient when she walks out of the hospital.

She returns to work.

To her family.

To caregiving.

To financial responsibilities.

To relationships.

To decisions about fertility.

To other diagnoses.

To a body she may have spent years learning not to trust.

And sometimes, she returns to a healthcare system she is still trying to understand.

My own journey has taught me something that more than a decade of advocacy has only reinforced:

A disease does not exist only inside an organ.

It is lived inside a person.

Inside a family.

Inside a culture.

Inside a workplace.

Inside a healthcare system.

And inside a life.

So progress in endometriosis care cannot be measured only by whether surgery is available, whether a clinic exists or whether a medical bill is subsidised. It must also be measured by whether patients can recognise when they need help.

Whether they can reach the right level of expertise.

Whether they can afford the choices available to them.

Whether their lives outside the consultation room are understood.

Whether their voices carry weight when they describe what is happening to their own bodies.

And whether the systems surrounding them make living with chronic illness easier to navigate, rather than requiring patients to become experts simply to find their way through it.

Singapore has made progress.

The question now is what we choose to do with that progress. For me, the next stage is not simply about raising more awareness of endometriosis. It is about building a deeper understanding of the people living with it, the systems surrounding them, and the gaps that still exist between the two. Because closing the gaps in endometriosis care means more than treating the disease.

Patients are already carrying enough. They should not have to carry the gaps in the system too.

Resources and further reading

The links below provide background on the clinical, healthcare financing, policy and specialist-navigation issues discussed in this article.

World Health Organization: Endometriosis fact sheet - Current WHO overview of endometriosis, symptoms, impact and knowledge gaps.

KK Women's and Children's Hospital: Endometriosis Centre - Information on KKH multidisciplinary endometriosis services.

Singapore Endometriosis Diagnosis & Management quick-reference guide - Singapore professional clinical guidance.

Ministry of Health: Singapore's healthcare financing framework - Overview of subsidies, MediSave, MediShield Life and MediFund.

Ministry of Health: MediSave outpatient care and CDMP conditions - Current Chronic Disease Management Programme coverage and MediSave outpatient rules.

Ministry of Health: Specialist Outpatient Clinic subsidies - Subsidy framework for public specialist outpatient care.

Ministry of Health: MediFund - Medical financial safety net for eligible Singapore citizens.

Agency for Integrated Care: CareShield Life - Severe-disability and Activities of Daily Living criteria.

Ministry of Social and Family Development: ComCare - General social assistance for eligible individuals and families.

National Registry of Diseases Office: About NRDO - Current national disease registries in Singapore.

National Population and Talent Division: Marriage & Parenthood Reset Workgroup - Government context on marriage, parenthood and declining fertility.

Specialists Accreditation Board: Recognised specialties and subspecialties - Official Singapore specialist accreditation structure.

iCareBetter: Singapore endometriosis provider directory - International voluntary provider directory.

iCareBetter: Surgeon application and assessment criteria - How the platform assesses participating surgeons.

SingHealth: Battling endometriosis, a chronic, silent and painful disease - Discussion of awareness, delayed care and endometriosis in Singapore.

Research review: Pathogenesis and multifactorial theories of endometriosis - Background on contemporary theories beyond a single-cause explanation.

Note: This article combines personal lived experience, patient advocacy observations and publicly available information current to October 2026. It is intended for awareness and discussion, not as individual medical or financial advice.

---

Written by:

Namira

Founder, E for Endometriosis